My doctor has a reason for every medicine:
Danazol- I'm a young, 21 year girl who doesn't need the side effects of testosterone
WinRho- too many deaths
Promacta- liver and bone marrow fibrosis
Splenectomy- I'm too young
Rituxin- can't remember the excuse but I'm sure it has to do with people dying.

I understand the concern but you are right, IVIg wipes me out for 48 hours. I'm a graduate student with a job doing research for the federal government, so this has definitely impacted my way of life. I figured that since I'm staying on IVIg for a while, getting a port could really help but, like I said, this 'new pill' is supposed to change everything. The only thing I could find was a pill that is still in the last testing phase. What gives?

Wondering if low Testosterone is a side effect of Rituxan. I have had two treatments of Rituxan. The last one being 11/2 years ago. Does ITP have any affect on Testosterone.
Thanks.

Thank you all so much for your comments. It really helps talking to people that go through the same thing. Staying positive is definatly a powerful tool.
I have been unusually exhausted for several weeks so I decided to have a Testosterone level done. Results were 1/2 of what the low range is. Liver enzymes are 3 times what the high end is. So, I am thinking if I can get these two levels where they are supposed to be I should feel pretty good. My luck the Platelets will drop. I know think positive.
Thank You all again for your support!!!

Hi! I was on Danazol after numerous tries of prednisone, IVIG, spleenectomy, Rituxan and nothing worked. Danazol has a lot of testosterone and the side effects were much like prednisone but my bones and joints hurt so much worse. I also had issues with my periods while I was taking the Danazol. They had me on that for about 6 months and my counts were around 75ish, but my quality of life with all of the pain and extra bleeding was horrible! From my experience I wouldn't recommend Danazol to my worst enemy, but everyone is different and it may work out better for you.

My doc is now suggesting Danazol, and I have been against it because I am a woman and wary of male horemones. I also have am an emotional person, and I am afraid of what Testosterone can do to nerves. He said it would only be a low dose, and would take about 3 mos to take effect.
Jean

Not a particularly popular drug here because it rarely seems to work and it causes unpleasant side effects particularly for women as it is a modified testosterone.

There are other drugs to try too.. azathioprine and mycophenolate are two immunosuppressants and then there are the new TPO drugs which tend to be used as a last resort. So don't give up just yet.

Dougie went to play tennis at the park today. Somehow (I can't get a straight answer out of him or his friends) he managed to get into a fight with some other kids. He has a black eye. Thankfully, nothing worse.

Anyway, my question is, how on earth do I get a testosterone filled teenager (13 next week) to understand that he simply can't afford to take these risks. He says he didn't start it, and why am I so cross, because it was only two punches that didn't hurt. I want to ground him for the foreseeable future, but I know thats not really a workable answer. But at the same time, I don't seem to be talking a language he understands when I tell him how serious it is.

Its just brought home to me how little he appreciates the risk involved in ITP - teenage boys generally underestimate risk I think, and Dougie is a bit like his eldest brother in having an extreme version of that trait.

Any suggestions would be very welcome

Yours in despair! Ali

Well okay we now have our own forum. But are our issues with ITP that different. I was diagnosed 15 months ago. I may have been battling the symptoms for at least 6 months earlier. I really have problems with the fatigue. I am tired of being tired. I keep wondering if testosterone levels are out of wack I find little information whether that can be an issue. Has anyone been tested and tried testosterone therapy. I am 62 and it seems the new internet health thing for men is improving your testosterone.

Clem

I talked to my chemo about getting testosterone treatment. He first wants to check my current levels. Did anybody have your testosterone levels checked before you took Danazol?

I never had my testosterone levels checked, so I can't tell you what kind of effect that would have. Good luck!

I think our issues are different... if for no other reason, there are so few of us at the support meetings, and discussion about women's issues relative to ITP, bleeding, etc, while very important, obviously don't pertain much to us given our various plumbing differences.

I, too, have frequent, heavy fatigue, which makes this whole earning a living thing interesting. Don't know about testosterone... but, as a result of another immune system thing, I also have cirrhosis of the liver, and the many meds I am on can go the same direction. What I find interesting is in my discussion with my HEMOC, he noted that, in his experience, immune system issues tend to "travel in multiples". Anyone else with this experience?

By the way, just back from a MRI session at Mayo... one doc mentioned it was fascinating that my spleen was actually larger in size than my liver (livers get smaller with cirr) in many views. He was not so happy to find out I race bicycles off road, until I explained I wear my helmet, body armor for the sole purpose to cover up my spleen and liver, and other safety goodies. He's happy now. Likes the fact I lost 200+ pounds riding my bike and watching my diet.

So, my last question of this note... what does everyone do for hobbies now that they have the ITP? I keep being told what NOT to do, so I have to get a little creative. T

Hi guys, I was Dx with ITP 11y ago so I've been on this site for a while - just not always active in posts. My first ITP episode was Dx as part of a routine physical and after being unresponsive to treatments we went with the splenectomy. It worked.... for almost 10y and came back about a year ago. This time Rituxan was the Rx and it pushed me to around 300.

I was reading the discussion re testosterone levels and it leaves me wondering?? I had never heard of that being a consideration. I'm 59 and wonder - does anyone have any good links to discussions of low testosterone and health. I'll start googling but there are likely many to sift through before I find the best and easiest to understand.

Glad to see there is a "Mans" fourm!! There is comfort and reassureance talking to fellow ITP'rs but men and women have different issues with ITP so it is great to converse with other men about these issues. I do not have time to go into my ITP life right now but I will be back with my story. I am on Testosterone thearpy.

I think I am at the point of finally giving in and getting a Splenectomy. I have been using IvIG as a primary means of maintaining a safe count. Initially it lasted for up to 6 mos, but now it is only lasting 3-4 weeks before I fall below 20.

I am so discouraged. I knowthis is just an immune disorder, and a life long inconvenience,..but every now and then it becomes overwhelming all over again. I got used to the disorder after about a year, mostly cruised along by accepting it, but every now and then I just resent it and get angry about having it and have a bit of a "pitty party."

My whole problem with the splenectomy is that my spleen is a part of me...a living part of me..that I am just getting rid of, with little promise that it will solve the problem. I am a 65 year old woman, and that, according to what I have read, reduces the chance of success.

The remaining options for treatment seem more threatening to me....I have tried Rituxin, Steroids, and Decadron in addition to the IvIg. The RI hospitals will not use WinRo..
My doctor is offering a drug that raises testosterone, and the side effects sound horrible to me. I struggle with my weight, and I don't want male traits. The last choice would be n-plate, and I am not sure I am ready to have weekly injections for life with those potential side effects.

So, I am giving up and I have decided to give up my spleen...but I am mourning it, and I feel so sad about the whole thing. So very sad, and no one seems to understand. Everyone seems to think it is no big deal. But it is a big deal to me.
Jean

I have had an opportunity to discuss symptoms and issues with a couple of you guys... but I have become convinced guys may have different symptoms than women. First, we have that testosterone thing going on, which plays along with serotonin (thanks for the help on this one Dean) and other parts of us relative to mood, energy and more. Moreover, per my hemoc, guys tend to run a bit more stable without the big crashes many women experience... not sure that's true, but suggests there is a difference in systems here. So, please fess up with your symptoms, meds and experiences. I'll try to compile all of this and provide an overview... I have a feeling ther ereally is a reason for man cave! Tom

Welcome to the "Man Cave"!! Glad to hear a positive outcome of a Splenectomy!! Never had Gout so I cannot help you much with that. I have had 3 bouts of cellulitis wich were not fun, especially in the knee area. Not sure if that had any bearing on ITP or not. I do not believe Gout can cause ITP but the "I" in ITP stands for Idiopathic, meaning unknown cause. So who knows what actually triggers the disorder. I feel my ITP was due to a Viral infection. As far as ED, well, that can be due to any number of things. Meds can certainly affect this. Have you ever had a Testosterone level check? Low Testosterone can affect energy levels, sexual desire/function. I am on a Testosterone thearpy, patch form as my level was low. Mental Health can also affect this issue. Have you discussed this with your Dr?
Your previous post was not inappropriate, a few of us are just trying to get more guys to the Man Cave to discuss Man issues associated with ITP or just to chat.

Let me know what the Dr. decides to treat with. Iron level may be another thing to have tested. Age may also be a factor in ED. Testosterone levels tend to decrease as Men get older.

Hi Dean, tome and all you other guys.

I have not been on line much lately. Part of it is that I have had a little more energy lately. My counts have been up to 123 to 131. So now my shots of Nplate are being spread out from every 3 weeks to every 4 weeks. I am waiting to see what my response will be. Most of the time my counts had been around 80K.

I think I have to fight the male attitude of telling myself to suck it up and do not complain.

While I have more energy, I still do not feel energetic. Everything I do seems to take a lot longer to accomplish simple tasks.

I am still tired and depressed. But I also have to deal with a lot of pain since the whole ITP response has really impacted my physical fitness. A have lost a lot strength and endurance. Some of it may be serotonin or low testosterone. My testosterone are suppose to be normal. A few weeks there was a discussion on "fat sticky platelets, which really was about that the paltelets are not uniform and normal sized. And with Nplate, I may be producing more platelets, but they me be of lower quality.

Clem

Hey, Clem. Testosterone, Serotonin and Iron really play a role in my energy level. I think I finally admitted that I needed to slow down in life. I have worked nights for 18yrs and a part time job in the afternoon, twice one week and 3 times the other week. I have pretty much stopped the part time job. What kind of depression symptoms are you having? Why do you feel your Testosterone is supposed to be normal? I have also been told that "big sticky Platelets" are not the best quality Platelets as normal. I was told once that my Platelets were larger than normal so it was difficult to get an accurate count.

Hi Dean and all:

What kind of depression have I been having? Well I have pulled back and away from most things. But it is all the same issues that I have been dealing with for a good part of my life. I have have taken most of the current meds for depression, but my physical reaction to them are worse then the depression, tiks, flailing, anxiety, severe emotion changes, etc. My got to experience what it is like to be around someone who had explosive anger outbreaks. It turns out that I am better off trying to manage depression without drugs.

As far as testosterone, my Hemo had my blood tested and was in the mid ranges. Maybe that is not enough.

Lately I am in the mode of just being tired of the disease and tired of being poked , prodded, stuck, fluid sucked out, etc. But I know it will not. I am coming up on 2 years of treatment. What is the next phase if any?

Hope all of you are doing better.

Clem

Welcome. You have been dealing with ITP for quite a while! Keep up the positve attitude. I feel that goes a long way with any diease/disorder. Have you ever had your Iron or Testosterone levels checked? Both my levels were low. Once I started taking Ferrous Sulfate, I started feeling more energy. My problem is taking it consistantly. You know guys hate to rely on a pill to feel better. Get that thought of succumbing to ITP completely out of your head!! Death from ITP is quite rare.
Yes, we should all enjoy life to the fullest. Anger and stress is such poison to our bodies!! I came as close as I have ever been to acting on a road rage situation the other day. It took me a few hours to calm down. It was not worth the stress at all!!!

Hi Firkins

Static is good, especially given that Mia was bottoming out in single digits a few weeks back. Is that count nearly symptom free?

Dougie has a blood test tomorrow too. We are playing "guess the count" this week, and my guess is 19 - I am much better at guessing than anyone else in our family! He also has the repeat blood test for liver function, so fingers crossed.......

He has waaaayyy too much testosterone floating about his body at the moment, resulting in lots of stupid risk taking and occasionally fighting. Thats actually persuading me that he does need to do something to be safe.

All the best, Ali

There are risks to a normal person crossing the road, but no-one suggests treating that!

I think you should follow your gut instinct and not be pushed into anything you don't want. I am in pretty much the same situation as you with my son - risks to treating, and risks to not treating. He's been fine for the last three years, and on the whole I am very happy with no treatment for him. There are two things making me consider treatment. Firstly at 13 he is getting much more independent and I can't keep watching him all the time. Secondly, he seems to be suffering a real adolescent testosterone rush at the moment. He takes stupid risks physically without any apparent perception of danger, and he also seems to get into scraps much more often. Even I think that a platelet count of 10 or so might be incompatible with someone who keeps getting into fights.

Fatigue was an issue for me when counts were low. I also had low Iron and testosterone levels. Was prescribed a Testosterone patch and Ferrous Sulfate (for low iron).
Not everyone experiences fatigue with low counts, but it can be an issue for some with low counts. Have you ever had those levels checked?

Thanks for the post Dean. I am trying to see if there might be any other reason for my fatigue. I have had a full set of blood tests done here in the UK (with no other problem detected) so I guess that would have shown up an iron deficiency? But would it have shown the testosterone as well? I will mention it to my GP (Doctor) next time I see him.

And it also occurs to me that my fatigue might be less of a problem than some of the side effect associated with various ITP treatments!

Meanwhile I am upping my (low) intake of green vegetables (for Vit K) and have just started on a Vit B Complex supplement maybe I will see some improvement from these.

BTW did your Testosterone Patch and Ferrous Sulfate actually restore your energy levels?

many thanks Roger

Roger S wrote: Thanks for the post Dean. I am trying to see if there might be any other reason for my fatigue. I have had a full set of blood tests done here in the UK (with no other problem detected) so I guess that would have shown up an iron deficiency? But would it have shown the testosterone as well? I will mention it to my GP (Doctor) next time I see him.

And it also occurs to me that my fatigue might be less of a problem than some of the side effect associated with various ITP treatments!

Meanwhile I am upping my (low) intake of green vegetables (for Vit K) and have just started on a Vit B Complex supplement maybe I will see some improvement from these.

BTW did your Testosterone Patch and Ferrous Sulfate actually restore your energy levels?

many thanks Roger

When I have had blood work done, the Iron test is a seperate test here. It does not show up on regular blood work. So did they actually do an Iron test? I have also been told that there can be issues with Iron binding and Iron absorbtion. Yes side affects of medication can be worse than symptoms of ITP. It never hurts to eat healthy. I could sure do better at it.
Testosterone levels generally decrease with age. The main issues with low T is decrease sexual function/desire, not fatigue. So low T really has nothing to do with fatigue. Sorry for the mistake. I think the combination of normal counts and Iron levels restored my energy. I still have bouts of low energy but that may be due to working nights and not enough sleep. I also take a Vit B-12 supplement, along with a Multi vit and vit C.
Good Luck Roger

Dean wrote:

Roger S wrote: Thanks for the post Dean. I am trying to see if there might be any other reason for my fatigue. I have had a full set of blood tests done here in the UK (with no other problem detected) so I guess that would have shown up an iron deficiency? But would it have shown the testosterone as well? I will mention it to my GP (Doctor) next time I see him.

And it also occurs to me that my fatigue might be less of a problem than some of the side effect associated with various ITP treatments!

Meanwhile I am upping my (low) intake of green vegetables (for Vit K) and have just started on a Vit B Complex supplement maybe I will see some improvement from these.

BTW did your Testosterone Patch and Ferrous Sulfate actually restore your energy levels?

many thanks Roger

When I have had blood work done, the Iron test is a seperate test here. It does not show up on regular blood work. So did they actually do an Iron test? I have also been told that there can be issues with Iron binding and Iron absorbtion. Yes side affects of medication can be worse than symptoms of ITP. It never hurts to eat healthy. I could sure do better at it.
Testosterone levels generally decrease with age. The main issues with low T is decrease sexual function/desire, not fatigue. So low T really has nothing to do with fatigue. Sorry for the mistake. I think the combination of normal counts and Iron levels restored my energy. I still have bouts of low energy but that may be due to working nights and not enough sleep. I also take a Vit B-12 supplement, along with a Multi vit and vit C.
Good Luck Roger

OK Dean . . . got the message . . . next visit will talk to Doc about getting that Iron test.

I Sure hope i'm not breaking any rules by posting this.
Reference Library

Immunomodulation: Enhancing Immune Function With Herbal Supplements - The Right Way

Immunomodulation
Enhancing Immune Function With Herbal Supplements - Doing It The Right Way.
“Immunomodulation describes the ability of an herb, nutrient, or other substance to promote healthy immune function. Our immune systems are a complex interplay of cells that dictate the body’s resistance to infections. These include macrophages, lymphocytes (B and T), and other factors known as cytokines (e.g., interleukin, interferon, qnd tumor necrosis factor). Lymphocytes, the body’s primry defense against viral infections, have been a primary area of focus with regard to HIV infection.
“A common denominator among immunomodulating herbs is the presence of complex sugar molecules known as polysaccharides. Polysaccharides improve the activity of lymphocytes and other cells of the immune system, thus strengthening the overall immune response.
“Perhaps the most well-known example of an immunomodulating herb is echinacea. . .echinacea simply increases all aspects of the immune response. . . the perfect short-term boost that many immune systems require from time to time.
“However, a ‘get busy’ immune stimulant like echinacea is not for everybody. If your immune system is already overactive, as is the case with autoimmune diseases, you should avoid echinacea. It’s also not recommended for progressive diseases such as multiple sclerosis. Finally, the jury is still out on whether echinacea should be used by persons with HIV infections.”
This is why many experts in the field believe that these conditions are the domain of the adaptogenic herbs. Adaptogens such as astragalus, ashwagandha and eleuthero “tend to enhance the immune system by way of a balancing approach, as opposed to the more nonspecific approach taken by echinacea. This means adaptogens can be used to treat conditions in which the immune system is either depressed or overactive.”
Donald Brown, N.D., in his book Herbal Prescriptions for Better Health, Prima Publishing, lists the following immune-related conditions that may be treated with herbal adaptogens:
- HIV infection
- Chronic fatigue syndrome
- Chronic hepatitis
- Cancer patients recovering from radiation or chemotherapy
- Systemic lupus erythematosus
He cautions, of course, that with most of these conditions, immune-enhancing actions “represent only one aspect of a complete health care program.”
Dr. Brown then continues, with the following observation: “Some mushrooms, including shiitake, reishi, and maitake, contain a high concentration of polysaccharides. These polysaccharides, like those of immunomodulating herbs, affect the immune system. Traditionally employed as tonics, these mushrooms have many of the same applications as the herbal adaptogens.”
In fact, when it comes to serious immune enhancing and/or immuno-modulating agents, the mushroom extracts he mentioned above–reishi, maitake and shiitake–have taken front stage when it comes to clinical research and treating serious immune-related medical conditions.
Products such as the Willner Chemists Phyto-Tech Mushroom Extract Complex are now available, providing combinations of these powerful immuno-modulating agents. The Phyto-Tech Mushroom Extract Complex contains a blend of Shiitake mushroom, Reishi mushroom, Maitake mushroom and fresh Ashwagandha Root. The information that follows, summarizing the current research on each of these four extracts, was taken from current reference databases, including Memorial Sloan Kettering, NHI, and Natural Standard.
Maitake Mushroom
Maitake (Grifola frondosa), is also known by the following common names: King of mushrooms, dancing mushroom, cloud mushroom, hen of woods.
Maitake is a mushroom that traditionally has been used in Japan and China as part of the diet and to treat diabetes and hypertension. Current interest in Maitake is related to its ability to stimulate immune activity. Like other medicinal mushrooms, maitake contains a complex sugar called a beta-glucan. In laboratory studies, maitake extract was able to stimulate various cells and factors in the immune system. Studies in animals show that it slows the growth of certain tumors and lowers blood glucose (sugar) levels.
Maitake is currently being used to enhance immune function, prevent and treat cancer, and to help manage diabetes.
Scientific Support:
Maitake demonstrated antitumor effects (16), enhanced bone marrow colony formation, reduced doxorubicin toxicity (11), and inhibited tumor metastasis in vitro (13). In a study done in mice, oral maitake extract promoted maturation of hematopoeitic cells to functionally active myeloid cells and enhanced peripheral blood leukocyte recovery following chemotoxic bone marrow injury (17). A novel polysaccharide, MZF, was shown to induce dendritic cell maturation and enhanced antitumor response (20).
Maitake also enhanced interferon activity against bladder cancer cells (18) and alleviated inflammation associated with inflammatory bowel disease (19).
In a small non-controlled study, tumor regression or significant improvements in symptoms were observed in half of the subjects using Maitake extract (5). In another study of postmenopausal breast cancer patients, oral administration of maitake extract was shown to have immunomodulatory effects (14). More studies are underway to establish Maitake’s anticancer potential.
Maitake extracts exhibited hypoglycemic effects in a few studies (9) (12). Preliminary data suggest that maitake may be useful in inducing ovulation in patients with polycystic ovary syndrome (PCOS) (22).
Mechanism of Action:
Maitake is thought to exert its effects through its ability to activate various effector cells, such as macrophages, natural killer cells, and T cells, as well as interleukin-1 and superoxide anions (2) (3) (4) (13). Maitake extract enhanced the growth and differentiation of mouse bone marrow cells treated with doxorubicin, a chemotherapeutic agent (11). In addition, maitake extract may modulate antigen presentation as evidenced by protection of mice against tumor implantation following transfer of dendritic cells from tumor-bearing mice that were treated with maitake extract (15).
Studies also suggest possible hypoglycemic activity (9). Alpha-glucan from maitake may increase insulin sensitivity (12).
Shiitake Mushroom
Shiitake Mushroom (Lentinula edodes) is also known by the following common names: Forest mushroom, lentinula, pasania fungus, lentinula, hua gu
The medicinal properties of Shiitake mushroom are attributed to a polysaccharide (sugar molecule) named lentinan, on which extensive research has been done. Lentinan is a polysaccharide called a 1,3 beta glucan. In laboratory tests, lentinan does not kill cancer cells directly, but enhances a number of aspects of the immune system, which may aid in the slowing of tumor growth. Lentinan also kills viruses and microbes directly in laboratory studies. Most studies involving lentinan involve intravenous or intramuscular injections. It is uncertain whether ingestion of shiitake mushrooms provides similar effects. One clinical trial has shown shiitake extract alone is not an effective treatment for prostate cancer. More studies are needed.
Scientific Support:
Shiitake mushroom, native to East Asia, is cultivated worldwide for its purported health benefits. The fresh and dried forms of the mushroom are commonly used in East Asian cooking. It is also valued as an anticancer agent.
Lentinan (1,3 beta-D-glucan), a polysaccharide isolated from Shiitake, has been well studied and is thought responsible for Shiitake's beneficial effects. It was shown to have anticancer effects in colon cancer cells (1), which may be due to its ability to suppress cytochrome P450 1A enzymes that are known to metabolize pro-carcinogens to active forms (2).
Lentin, the protein component, has strong antifungal properties, inhibits proliferation of leukemic cells, and suppresses the activity of human immunodeficiency virus-1 reverse transcriptase (3). Studies conducted with Shiitake extracts in vitro and in mice revealed the mushroom's antiproliferative (4), immunostimulatory (4), hepatoprotective (5), antimutagenic (6), and anticaries (7) properties, but a clinical trial failed to show effectiveness in the treatment of prostate cancer (.
Results from two small studies of HIV-positive patients who were administered intravenous lentinan showed a statistically insignificant increase in CD4 cells and neutrophil activity in some patients; researchers also reported severe adverse effects in some patients (9).
But improvements in quality of life and survival were seen with an oral formulation of superfine dispersed lentinan in patients with hepatocellular carcinoma (15), gastric (16), colorectal (17), and pancreatic (18) cancers.
Mechanism of Action:
Lentinan possesses immune-regulatory, antimicrobial, anti viral, and cholesterol-lowering effects (13). The water extract of shiitake decreased IL-1 production and apoptosis in human neutrophils. However, it increased apoptosis in U937 monocytic cell line (14). Lentin, the protein component of shiitake, has strong antifungal effects. An in vitro study has shown lentin can inhibit the proliferation of leukemia cells and suppress the activity of human immunodeficiency virus-1 reverse transcriptase (3).
Reishi Mushroom
Reishi Mushroom (Ganoderma lucidum) is also known by the following common names: Ling zhi, ling chi, lin zi, mushroom of immortality
Reishi mushroom has antioxidant properties and may enhance immune responses.
Reishi mushroom contains complex sugars known as beta-glucans that stop the growth and prevent spreading of cancer cells. When animals were fed beta-glucans, some cells of their immune system become more active. Limited data from clinical studies suggest Reishi mushroom can strengthen the immune responses in humans.
In addition, reishi mushrooms contain sterols that can act as precursors to hormones in the body, along with substances called triterpenes that may have blood pressure-lowering and anti-allergy (anti-histamine) effects. Reishi mushrooms have also been shown to slow the process of blood clotting.
Scientific Evidence:
Derived from the cap and stem of the mushroom, reishi mushroom is used as an immune stimulant by patients with HIV and cancer. The active constituents are thought to include both beta-glucan polysaccharides and triterpenes (1). Extracts of reishi can stimulate macrophages and alter the levels of TNF and interleukins (2) (3) (4) (5). Reishi also inhibited platelet aggregation (11) (12) and improved lower urinary tract symptoms (LUTS) in men (9) (10) (20).
In vitro and animal studies indicate that reishi has chemopreventive effects (21), alleviates chemotherapy-induced nausea (13), enhances the efficacy of radiotherapy (22), and increases the sensitivity of ovarian cancer cells to cisplatin (27). It was also effective in preventing cisplatin-induced nephrotoxicity (28).
In small clinical studies, reishi increased plasma antioxidant capacity (6) (7), and enhanced immune responses in advance-stage cancer patients (. Remission of hepatocellular carcinoma (HCC) has been reported in a few cases (23).
Mechanism of Action:
The triterpenes are reported to have adaptogenic and antihypertensive, as well as anti-allergic effects. In addition, they may inhibit tumor invasion by reducing matrix metalloproteinase expression (16) and tumor metastases by limiting attachment to endothelial cells (17). A number of polysaccharides present in reishi, such as beta glucans, have demonstrated antitumor and immunostimulating activities (18). They can induce the maturation of normal and leukemic monocytes into dendritic cells (19). The adenosine in reishi is thought responsible for the inhibition of platelet aggregation (11). Extracts of reishi have demonstrated the ability to stimulate macrophages and to alter the levels of TNF and interleukins (2) (3) (4) (5). Reishi can increase plasma antioxidant capacity (6) (7) and enhances immune response in advance-stage cancer patients (. Furthermore, reishi extracts can inhibit 5-alpha reductase, an important enzyme that converts testosterone to dihydrotestosterone and is upregulated in benign prostatic hyperplasia (9)
Ashwagandha
Ashwagandha (Withania somnifera) is also known by the common names Indian ginseng, Winter cherry.
Ashwagandha is a popular Ayurvedic herb. Studies show that it has anti-inflammatory effects. Ashwagandha also relaxes the central nervous system in animals. Laboratory studies found that ashwagandha kills some cancer cells and enhances some immune cells possibly by damaging the cancer cells' ability to generate the energy it needs to reproduce. Ashwagandha also reduces the level of an important antioxidant in tumor cells, which may enhance the ability of radiation therapy to kill those cells. While animal and laboratory tests have shown that Ashwagandha slows the growth of cancer cells and enhances the effect of radiation therapy, these effects have not yet been confirmed in humans.
Other purported actions of Ashwagandha include reducing fatigue, inflammation and pain, and stress.
“Ashwagandha is an adaptogen, or substance that helps protect the body against various emotional, physical, and environmental stresses. Ashwagandha is reported to have tonic or adaptogenic effects similar to the panax ginsengs.” ( Www.nhiondemand.com )
Scientific Evidence:
A popular Ayurvedic herb, ashwagandha is often used in formulations prescribed for stress, strain, fatigue, pain, skin diseases, diabetes, gastrointestinal disease, rheumatoid arthritis, and epilepsy (1). It is also used as a general tonic, to increase energy and improve health and longevity (2). Externally, it can be applied as a local analgesic (3). The active constituents are thought to include alkaloids, steroidal lactones, saponins, and withanolides.
In vitro studies suggest that ashwagandha has neuroprotective (26) and anti-inflammatory properties which may protect against cartilage damage in osteoarthritis (4). Animal studies suggest antitumor, immunomodulatory, antioxidant, and anti-stress properties. In addition, improvements in hyperglycemia, hyperinsulinemia, and insulin sensitivity have been detected in an animal model of type 2 diabetes (5). Other studies indicate cytotoxic, chemopreventative, immunomodulating (, and radiosensitizing effects (1) (9) (10) and enhancement in chromosomal stability (11).
Ashwagandha is rich in iron (2); small scale human studies suggest that it may promote growth in children and improve hemoglobin level, red blood cell count, sexual performance in adults (2), and may also be useful in treating male infertility (27). An herbal tea containing ashwagandha was shown to increase natural killer cell activity in healthy volunteers with recurrent coughs and colds (22). Data also indicate that ashwagandha may be useful in the treatment of anxiety (23). In another clinical trial, an herbomineral formula containing ashwagandha was shown to benefit osteoarthritis (13). Preliminary data suggest benefits of ashwagandha in improving balance in patients with progressive degenerative cereberral ataxias (24).
Ashwagandha also reduced growth of breast, central nervous system, colon, and lung cancer cells (6) without affecting normal cells (7). Ashwagandha may help prevent chemotherapy-induced neutropenia (12), but it has not been studied in cancer patients.
Mechanism of Action:
Alkaloids, steroidal lactones, saponins, and withanolides are thought to be the biologically active components of ashwagandha. Studies have pointed to cyclooxygenase (COX) inhibition as the mechanism for the herb's antiarthritic properties. In animal studies, Ashwagandha's anti-inflammatory effects were comparable to hydrocortisone (15). Microarray analysis revealed that ashwagandha represses proinflammatory gene expression, including IL-6, IL-1ß, IL-8, Hsp70, and STAT-2, and induces p38/MAPK expression in a prostate cancer cell line (16). It exhibits antioxidant effects in the brain and tranquilizing effects on the central nervous system in animals (2) possibly by influencing GABA receptor function (17). Ashwagandha may inhibit tumor growth (1) (21)and increases cytotoxic T lymphocyte production (. In vitro studies have shown that root extracts have cytotoxic properties against lung, colon, central nervous system, and breast cancer cell lines (6). Withaferin A induces reactive oxygen species (ROS) generation and disruption of mitochondrial function in a human leukemia cell line, thereby inducing apoptosis (18). In estrogen receptor-positive (ER+) and negative (ER-) breast cancer cells, withaferin A induces apoptosis and decreased tumor size (19). Apoptosis of cancer cells by withanone is mediated through p53 (7). Withianone also has anticancer activity by binding to TPX2-Aurora A Complex (29). Other studies show ashwagandha’s cytotoxicity is related to its structure; it enhances ATPase and inhibits succinate dehydrogenase activities, impairing oxidative phosphorylation. In animal studies, ashwagandha can enhance the effects of radiation therapy (20) by reducing tumor GSH levels (10). Ashwagandha can reverse paclitaxel-induced neutropenia in mice (12). Significant toxicity was observed at high doses in animal studies (20); however, toxicity studies in humans are limited (2).
Cautions:
Do not use during pregnancy. Keep out of the reach of children. Use caution if taking anti-coagulant medication. May have a slight blood glucose lowering action.

Note: The substances discussed in this article can be found in the Willner Chemists' product, PhytoTech Mushroom Extract Complex, product code 57002

References: General
MSKCC.ORG (Memorial Sloan-Kettering Cancer Center
NHIondemand.com
Brown, Donald N.D., Herbal Prescriptions for Better Health, Prima Publishing.

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dexamethasone or dex is just another powerful corticosteroid .. danazol is just a modified testosterone molecule the difference is, is that one is a signaler for muscle growth growth for example danazol.. and corticosteroids are catabolic meaning they do not build and also destroy muscle for example dex...but basically danazol is modified testosterone with little androgenic effects because doctors are looking to utilize the immunosuppressant effect of the testosterone for obvious reasons and not the anabolic one..just looking for someone who has either tried danazol or another anabolic steroid and what their experience was like treating ITP with it..

but when you say zero successes do you mean like it did not raise their platelet count or it was not able to cure their ITP?

It is amazing what the all mighty dollar will do to humanity. Say one thing and do almost the opposite with some suffering to boot. I agree with 2014 looking bad. I got a few questions: has anyone got tested for testosterone levels for the cause of ITP?? What about blood pressure from stress and meds.?? Anybody smoke and the possibility in change of cigs.?? Back problems??? Acid reflux anybody? I'm just looking for a common factor that might help us finding a better way to fight this or possible underlying cause that docs are overlooking.

Hello. I'm sort of new to this forum but have a question for some of the guys out there. I've always had some autoimmune problems, mostly related to sinus infections. Things sort of went out of order for me. I was diagnosed as hypothyroid at 18 months, type 1 diabetes at 15, and thrombocytopenia at 31 (I'm now 34 years old).

Since I started IVIG treatments, I've noticed a couple of things that have changed about me.

1)A drop in my testosterone level. My urologist suggests that this is more diabetes related and I can't blame him for thinking so. But I have no interest in sex and my wife and I have only been married for about 18 months. I take low dose testosterone injections which have given me some of my "oomph" back, but still not much interest in sex. The pills don't work worth a darn except for giving me excruciating headaches (those Viagra commercials make it look so easy). Has anyone else experienced this? It's obviously caused a lot of heartaches in my new marriage for both myself and my bride. Fewer things are more de-masculating and debilitating than not being able to get an erection or losing it once sex has begun.

2)I've noticed a change in the texture of my skin. My skin has seemed to turn paper thin. Whatever this condition is, I fear that it's somewhat genetic as my grandfather and his mother had it as well. But this didn't start in me until IVIG began.

I know that platelet counts are just numbers and while they're up and down, I haven't had any scares (knock on wood) since I was first diagnosed. I am not a prime candidate for a splenectomy nor do I want one - it would be an absolute last resort. Any other men out there having these issues?

I am glad you are able to talk about this subject online. It must be difficult to go through at your 'young' age and with a relatively new marriage. I am 59 and had been in a loving relationship with Ellen for nearly 16 years when I noticed my drive was not the same. I have not had IVIG or ITP or diabetes, and have no idea why my testosterone levels dropped. I have never heard of IVIG causing testosterone to drop.

I can imagine how autoimmune problems could damage testes, as they can damage almost every other organ, but I did read that testes are "immune privileged" which means they are less vulnerable to immune responses. Have you checked your thyroid recently? That can cause low libido.

Testosterone is just one factor, but it is an important one. I don't understand why you would need injections when topical treatments (Axiron, Androgel, etc.) work well to normalize testosterone levels. I have noticed my nails grew out stronger (it takes six months, though, for the nail tips to grow out new and strong) and my skin is a little less fragile.

Loss of libido is a common symptom of depression. If you have any signs of depression be sure to seek treatment. Some medications can help, but some, like the SSRIs, often cause a drop in libido.

If you are overweight, diet. Obesity is a common factor in erectile dysfunction. Your body will function better at a healthier weight, and I have always found that dieting itself helps to enhance libido.

Exercise. Get fresh air. Hike or bicycle or go to the gym. Get your heart pumping and your blood flowing. It helps the body as well as the mind.

Finally, focus your energy on 'the other 90%'.

I hope that others will share their experience and knowledge, and add to what I have said.

Above all, I hope you will take an ALL-OF-THE-ABOVE approach. Just one change might not be enough, but together they might bring about the change you are looking for.

Thanks for your words, Rob. It's not an easy thing to discuss, but frankly it's been such a frequent topic with my wife, talking about it in the forum doesn't really bother me that much. I love my wife so much that I'll do what it takes...I'm just not sure what that is right now.
I hadn't really thought about depression mostly because I've seen members of my own family go through it and don't see myself as exhibiting the same symptoms. However, I'm smart enough to know that depression disguises itself well so it may be worth going to see somebody. I fear more medication as IVIG and diabetes have enough side effects without having to add something else major into the mix.
I tried the Androgel treatments, at first, when I first started the testosterone replacement therapy. While I think it helped, I like with my wife and two daughters and the Androgel is (or can be) dangerous for women to come in contact with, especially those that haven't entered puberty yet. My oldest has just started puberty so it would be less of an issue for her, but the instructions (and doctor) are pretty specific about the dos and don'ts of the medication. It was going to ultimately cause too many lifestyle changes for me, hence why I switched the injection. I've probably been on it since August of last year; not quite 6 months.
Thank you for your suggestions.

Hi there!


I would like to try combo Promacta + Danazol. Promacta 25 mg works for me fine, but costs about 60 EUR per day. Danazol is a modified testosterone, an old, cheap drug. In addition to this Promacta is a maitenance drug and Danazol can lead to durable remission after ceasing of treatment. The plan is to stay on Promacta till Danazol will start work. Do you have any experince with Danazol?


Many thanks.

Hi -

Apologies for the forthcoming long post.

My platelet count has been low for at least 30 years, but my doctors never really followed up until about 12 years ago. At that time at hematologist performed extensive blood tests + a bone marrow test and said the results where negative - that this was just "my" normal..

Things changed 2 years ago when I was hit with some mysterious digestive problems that turned me into a train-wreck - I lost 20 pounds (and I was thin to begin with), I suffered from bad fatigue, brain fog, depression/anxiety, acid reflux, you name it. I was placed on a gluten-free diet (though I never really tested positive for celiac) which appeared to slowly start to help my digestive problems but it was not an overnight thing.

After suffering for 6 months - a NP decided to test for different things - including autoimmune antibodies and testosterone. The autoimmune tests came back negative but it turned out my T level had dropped to that of someone who is like 150 years old. I sure felt like it.

I was then place on hormone replacement therapy (HRT) and after about 18 months o- I feel pretty darn good these days - great energy, never getting sick, and so on. However, it seems like my platelets, after being steady in the low 100's for a long time, have began to drop. Note the drop started prior to beginning HRT, in that time period where I felt so bad. They slid down into the 90's, then into the 80's, then my last test was 79.

I've done a lot of testing over the past year and the hematologist says I have a very slight, barely measurable, "possible" autoimmune issue? The vast majority of the tests have come back negative. At the same time, my WBC have started to go lower. So I'm now on monitoring - every 6 months. Another drop - and we'll repeat the bone marrow test.

I'm confused as to what could be going on. I don't really have any specific diagnosis, we are just in 'watch' mode.

My hematologist admitted she hates to start any treatment until absolutely necessary - and really hates using steroids due to the side effects. I do not know if there is more she could do to try and narrow down a root cause.

I would be "OK" with the platelets drop in general, but the drop in WBC worries me more. My Dad, who is 80 and still doing OK - went through an issue early last year where he was very sick with what they thought was pneumonia even though he did not have a lot of the symptoms like a fever, cough, etc. He was extremely weak/fatigued, no appetite, just kind of in a fog, sitting there all day. After a week in the hospital - and being treated with strong antibiotics, he recovered - but they *still* do not know what exactly he had. After hospitalization, they tested his WBC for about 8 weeks, week after week, and to his hematologist's confusion, it bounced all over, very low one week, back to normal the next. Since then he has been fine in general, appetite back, etc.

I suspect I maybe have 'inherited' something here. But his platelets, while just on the border of low, have remained steady while mine have not. So as I said, at this point very confused, and starting to become more concerned.

I don't really have questions at this point - but I would appreciate any comments on anyone who has maybe seen a case like mine. Being on HRT may complicates my situation because among other things, HRT will 'thicken' the blood, and cause RBC counts to go up. I do not know if HRT is making my situation worse by maybe changing my autoimmune function.

I do not, and have never suffered from bleeding issues. I very rarely get sick, and any colds are typically minor - I've not had any colds or anything in over 15 months.

I am not freaking out over this -- yet -- but I kind of have a bad feeling this my life is going to change, maybe a few years from now (I'm 56 years old), and in the back of my mind I feel like there is this hourglass with the sand running out.

Pam -

My platelet count was 79, WBC 2.9. My WBC has been hovering at 3.0/3.1 for a while. My RBC have always been in the mid to high end of normal and are in that range now.

I do not have a diagnosis of anything as yet - we are watching. In 6 months another blood test and if they drop any more than a bone marrow test. And as yet - my hematologist has yet to suggest any suspicions that she might have concerning my condition.

I've been through this before - 12 years ago. The bone marrow test back then was negative, and the hematologist at the time did not find anything.

The possible wild-card is the fact that I am on testosterone therapy. The upshot is that higher levels of testosterone can suppress the immune system. And my levels have gone up higher than my PCP is comfortable with, so I'm off to get a 2nd opinion on my current treatment. Whether this is relevant, I do not know.

Bottom line though - I do not know what I have that is causing the low counts. And I'm not going to google and try and diagnose myself. Right now I feel good - and I'm going to enjoy it while I'm feeling good. The future will take care of itself.


Best,
Jeff

Hal9000 wrote:
Isn't it capable of putting folks into remission? Hard to beat that, heh ? Also, good as long as liver does not get out of wack? Did doc say anything about how it might take to become effective?

I think it is one of the less used treatments - for women being a synthetic hormone (testosterone) it can be bad news unless specific conditions are indicated and can result in deepening voice, body hair growth and a complete non starter if pregnancy is a possibility. For younger men (I am 63) it can cause fertility issues, but appears to have had some success with refractory ITP patients.

It can take some considerable time to work (3/4 months) with many patients dropping out with side effects. If I do end up taking it I will keep the community appraised of my progress or lack of!

My 20 year old dx with ITP, PNH and pit tumor 8 months ago...comorbidity they call it...2 auto immune diseases simultaneously...any advice please? PNH clone only 9%...platelets 50...low testosterone Hyperprolactinoma ....possible cushings disease...

I suppose women have a different attitude to Danazol than men.
I've posted links to medicines.org.uk before but people in The USA don't seem able to access them, so have copied relevant (male) side effects info for you Hal incase you've not managed to access them. Not that I'm saying you will get any of them but always good to be aware.

4.4 Special warnings and precautions for use
In view of its pharmacology, known interactions and side effects, particular care should be observed when using danazol in patients with hepatic or renal disease, hypertension or other cardiovascular disease and in any state which may be exacerbated by fluid retention as well as in diabetes mellitus, polycythaemia, epilepsy, lipoprotein disorder, in those with a history of thrombosis, and in those who have shown marked or persistent androgenic reaction to previous gonadal steroid therapy. Adjustment in concomitant therapy may be called for particularly in patients with hypertension, diabetes mellitus or epilepsy when introducing or discontinuing danazol as well as during Danazol treatment.
Caution is advised in patients with migraine.
Until more is known, caution is advised in the use of danazol in the presence of known or suspected malignant disease (see also contraindications). Before treatment initiation, the presence of hormone-dependent carcinoma should be excluded at least by careful clinical examination, as well as if breast nodules persist or enlarge during danazol treatment. In the event of virilisation, Danazol should be withdrawn. Whilst androgenic reactions will generally prove reversible, continued use of danazol in the face of evident virilisation is likely to cause irreversible androgenic effects.
Danazol should be stopped if any clinically significant adverse event arises, and particularly if there is evidence of papilloedema, headache, visual disturbances or other signs or symptoms of raised intracranial pressure, jaundice or other indication of significant hepatic disturbance, thrombosis or thromboembolism.
In addition to clinical monitoring in all patients, appropriate laboratory monitoring should be considered which may include periodic measurement of hepatic function and haematological state. For long-term treatment (> 6 months) or repeated courses of treatment, biannual hepatic ultrasonography is recommended.

The lowest effective dose of danazol should always be sought.

Experience of long term therapy with danazol is limited. Whilst a course of therapy may need to be repeated, care should be observed as no safety data are available in relation to repeated courses of treatment over time. The long-term risk of 17-alkylated steroids (including benign hepatic adenomata, hepatocellular focal nodular hyperplasia, peliosis hepatis and hepatic carcinoma), should be considered when danazol, which is chemically related to these compounds, is used for periods longer than those normally recommended.

Danazol capsules contain lactose. Patients with rare hereditary problems of galactose intolerance, the Lapp lactase deficiency or glucose-galactose malabsorption should not take this medicine.
4.5 Interaction with other medicinal products and other forms of interaction
Anti-Convulsant Therapy: danazol may affect the plasma level of carbamazepine and, possibly the patient's response to this agent and to phenytoin. With phenobarbital it is likely that similar interaction would occur.
Anti-Diabetic Therapy: danazol can cause insulin resistance.
Oral Anti-Coagulant Therapy: danazol can potentiate the action of warfarin.
Anti-Hypertensive Therapy: Possibly through promotion of fluid retention, danazol can oppose the action of anti-hypertensive agents.
Ciclosporin and tacrolimus: danazol can increase the plasma level of ciclosporin and tacrolimus, leading to an increase of the renal toxicity of these drugs.
Concomitant Steroids: Although specific instances have not been described, it is likely that interactions will occur between danazol and gonadal steroid therapy.
Migraine Therapy: danazol may itself provoke migraine and possibly reduce the effectiveness of medication to prevent that condition.
Ethyl Alcohol: Subjective intolerance in the form of nausea and shortness of breath has been reported.
Alpha Calcidol: danazol may increase the calcaemic response in primary hypoparathyroidism necessitating a reduction in dosage of this agent.
Interactions with laboratory function tests: danazol treatment may interfere with laboratory determination of testosterone or plasma proteins (see section 4..
Statins: The risk of myopathy and rhabdomyolysis is increased by concomitant administration of danazol with statins metabolised by CYP3A 4 such as simvastatin, atorvastatin and lovastatin.

4.8 Undesirable effects
The possible causal relationship between danazol and many of the following events reportedly associated with its use remains to be defined.
Blood and lymphatic system disorders
Increase in red cell and platelet count. Reversible erythrocytosis or polycythaemia may be provoked. Eosinophilia, leucopenia, splenic peliosis and thrombocytopenia have also been noted.
Endocrine disorders
Androgenic effects:
Acne, weight gain, increased appetite, seborrhoea, hirsutism, hair loss, voice change, which may take the form of hoarseness, sore throat or of instability or deepening of pitch. fluid retention.
Other endocrine effects:
Modest reduction in spermatogenesis.
Metabolism and nutrition disorders
Insulin resistance may be increased in diabetes mellitus but symptomatic hypoglycaemia in non-diabetic patients has also been reported as an increase in plasma glucagon level, mild impairment of glucose tolerance.
A temporary alteration of lipoproteins in the form of an increase in LDL cholesterol, a decrease in HDL cholesterol, affecting all subfractions, and a decrease in apolipoproteins A1 and AII, is likely with danazol in the female. The clinical significance of these changes is not established.
Induction of aminolevulinic acid (ALA) synthetase, and reduction in thyroid binding globulin, T4, with increased uptake of T3 but without disturbance of thyroid stimulating hormone or free thyroxin index, is also likely during therapy.
Psychiatric disorders
Emotional lability, anxiety, depressed mood, nervousness and changes in libido.
Nervous system disorders
Dizziness, headache, vertigo, benign intracranial hypertension.
Danazol may aggravate epilepsy and expose the condition in those so predisposed.
Fluid retention may explain the occasional reports of carpal tunnel syndrome. Danazol may also provoke migraine.
Eye disorders
Visual disturbances which may take the form of blurring or difficulty in focusing and in wearing contact lenses or need for temporary alteration in refractive correction have been noted.
Cardiac disorders
Hypertension, palpitation and tachycardia.
Thrombotic events including sagittal sinus, cerebrovascular thrombosis as well as arterial thrombosis. Myocardial infarction.
Vascular disorders
Flushing, exacerbation of hypertension
Respiratory, thoracic and mediastinal disorders
Pleuritic pain, interstitial pneumonitis
Gastrointestinal disorders
Nausea, epigastric pain
Hepatobiliary disorders
Modest increase in serum transaminase levels and rarely cholestatic jaundice, benign hepatic adenomata and pancreatitis. Peliosis hepatis as well as malignant hepatic tumour have been observed with long term use.
Hepatocellular injury, hepatic failure, jaundice hepatocellular, hepatocellular focal nodular hyperplasia.
Skin and subcutaneous tissue disorders
Rashes, which may be maculopapular, petechial, or purpuric or may take an urticarial form and may be accompanied by facial oedema. Associated fever has also been reported. Rarely, sun-sensitive rash has been noted. Inflammatory erythematous nodules, changes in skin pigmentation, exfoliative dermatitis and erythema multiforme have also been reported.
Musculoskeletal and connective tissue disorders
Backache and muscle cramps which can be severe. Creatine phosphokinase levels may also rise. Muscle tremors, fasciculation, limb pain, joint pain and joint swelling have also been reported.
Renal and urinary disorders
Haematuria has rarely been reported with prolonged use in patients with hereditary angioedema.
General disorders and administration site conditions
Fatigue

Hello group, I was recently diagnosed with ITP, by a hematologist. Apparently, my platelets carry a protein that my spleen disdains.

Before this, my primary care dr told me I have anemia, plus low iron, potassium, red blood cells, thyroid, and testosterone. I've been on thyroid, iron, and potassium pills, and took the supplement T-Male to help testosterone, but they're not really changing anything.

I also get edema in my legs and hands, and face, I think. And I'm also always fatigued, which I can understand.

But are all these things pursuant to the cause of ITP? It's hard to believe.

The low RBC and anaemia could be from blood loss due to low platelets. My colon bleeds when my counts are low. Low blood counts will make you tired. Low platelets can also cause muscle and joint aches. If you're really low on RBC the Hemo can give you an iron infusion, it will work faster than the oral supplements.
Read through the treads, there is a lot of good information here.

I was diagnosed with ITP in July, 2012. It came as a complete shock. It also came on the heels of another shock: Just three months previous, I was found to have a complete blockage of one of my main heart arteries. This was pretty stunning because I've spent my entire adult life (I am currently 65) participating in sports such as cycling, cross country skiing, hiking, running, canoeing, etc. Nevertheless, I had serious heart disease and required open heart surgery in May, 2012.
Two months after the surgery, a routine blood test revealed low platelets - around 40,000. I was assigned a hematologist, and thus began a pretty scary rollercoaster ride, one that a lot of you are probably familiar with. In the first conversation with her, I remember the hemo ordered me to use an electric shaver, not one with blades. And stay away from knives! No cutting veggies! Sheesh....
Treatment started immediately. First, there was prednisone. My platelets responded well at first, but then dropped over a few weeks as the prednisone was tapered. I then received IVIG, again raising my platelets close to the normal range. Temporarily. A month later, more IVIG. I had tolerated the first round very well. Second round, not so much. I became really, really ill. By far the worst headache I'd ever experienced, along with a lot of vomiting. I finally recovered after about 5 days in bed, pretty much unable to move. My platelets were up, but again they pretty quickly tanked. Another round of IVIG followed, along with the same gnarly side effects. My hemo decided I'd suffered enough, so she tried other stuff. More rounds of prednisone. She tried anti-D. More nasty side effects. Once, my platelets dropped to an alarming 11,000. I was admitted to the hospital and given another round of anti-D, which again made me sick but raised my platelets out of the danger zone.
By this time, a couple of years in, I was getting kind of discouraged. The prednisone was starting to affect me in some pretty "interesting" ways. I had a ton of energy! I really didn't seem to need much sleep. I felt really good. BUT. I was starting to develop cataracts. My blood testosterone levels were in the tank, which sadly has certain implications for ones libido and energy levels (when not on prednisone). And in 2015, I fractured a vertebrae while skiing and was subsequently found to have much lower bone density than someone my age should have.
In the spring of 2014, I was given Rituxan. I was aware that this can be very effective, but takes some time - often months. Well, nothing happened. My platelets hovered in the 40,000 range, sometimes a bit lower, sometimes a bit higher, as they had the previous few months before the Rituxan. Not exactly dangerous platelet levels, but not too encouraging either. The hemo kept talking about my spleen. I wasn't keen to lose that, and not really very excited about more surgery.
Finally, after I broke my back in the spring of 2015, I decided no more prednisone, and to just see what happened. I felt that the cure, in this case, was worse than the disease. I remember accidentally cutting my hand pretty deeply once when my platelets were in the low 20,000s. Nothing horrible happened. It stopped bleeding pretty quickly and normally. I never really bruised easily, nor did I ever develop the little spots on my ankles.
And then, more than a year after the Rituxan, I was surprised to see my platelets gradually on the rise. By fits and starts, they started to move toward a normal level. My hemo feels that this was not related to the Rituxan - well over a year had passed. But last check, my platelets were well over 100,000. I've done nothing differently. I eat well, I exercise regularly, I get plenty of sleep.
As we know, the causes of ITP are pretty unknown for most of us. I can only think of one possibility for my own case: very long term (20 years) of ibuprofin. I'd injured my back in the late 1980's, and used ibuprofin ever since. I had stopped using it a couple years before my diagnosis, but I wonder if long term use was a causal factor. Who knows....
There are a few things I know now that I wish I'd known back when I was first diagnosed. First, don't completely freak out about this. From what I understand, hardly anyone dies from this, for one thing. Secondly, as my latest hemo told me, he doesn't get too excited as long as platelets remain over 30,000. And maybe even lower is okay, depending on the patient. Looking back, I feel that I became needlessly way too stressed out. I mean, when my hemo tells me to quit using blades to shave lest I nick myself and bleed to death, who can blame me?
Regarding prednisone, I'd be pretty careful about that and really press your hemo and ask a ton of questions if that is prescribed more than once or twice. The long-term side effects are real and pretty negative.
Anyway, I have no idea what the future holds for me. Perhaps ITP will again raise its ugly head. But I'm optimistic. Please remember that there is hope for the long-term. I believe there are a lot of people out there like me who are in remission. I have a lot of empathy for those with ITP and how it feels to be diagnosed. It sucks. But don't give up! Learn all you can. And use the PDSA resources and read others' stories as well. It really made me feel a lot better when I was pretty down about stuff.
Oh, one more note: I was, and remain, needle-phobic! I hate needles! If you're new to this and feel the same way: I never lost my needle-phobia. But after being poked the first hundred times or so, I got used to it. If that makes any sense.

fallenstar97 wrote: How do I go about asking my gynecologist to look further into why I’m still bleeding vaginally even though my platelets are higher? I feel like when I talk to her she doesn’t listen. The last time I saw her she told me that she didn’t want to change anything because I’m “stable” but they don’t understand that I’m not. It’s not normal or safe for me to be bleeding so much. I have an appointment to see her in 3 weeks because I NEED to try something new. And if that doesn’t work then I will be looking for someone new to see me & my medical file.

If your gynecologist won't investigate anything, then you definitely need a new one. I'd set up an appointment with a new one ASAP, especially since it can take a few months to get in with a new doctor. Over the years with my medical issues I have learned that there are a LOT of bad doctors out there, and there is absolutely no benefit to sticking exclusively with one. If she has thrown in the towel, she won't do anything more for you.

With my heavy periods, my gynecologist did some testing to make sure that my menorrhagia wasn't related to fibroids or other gynecological concerns. They did an endometrial biopsy to check that everything was fine there (my results came back fine) and they also did an ultrasound (also came back fine). There are several things that they check when you complain of heavy periods to rule out other issues, and hopefully you have had all of that done. If you haven't, again that is an indication that you have a crappy doctor. By checking all of these other potential problems and ruling them out, I know that my heavy periods are only caused by my low platelets, and I can see that because I only have trouble when my counts are low. Your issues definitely sound like something else than platelet related (Except for your previous problem with the platelet count of 7k and losing lots of blood. That is definitely ITP related. One of my runaway periods when I had low counts led to me needing a blood transfusion because I didn't get my platelet count high enough to stop the bleeding before I had lost too much. But all of this other bleeding you have doesn't sound anything like what happened when you had low platelets.)

Regarding all of the hormones, it sounds like you have been irregular and having problems for many years. Anecdotally, I've heard bad things about the depo provera shot causing issues with hormone regulation after the fact that can cause irregular cycles. Since you have LOTS going on with hormones and all kinds of different birth control medications thrown in, and we know that they have lots of effects on bleeding, I would go to an endocrinologist and get your hormone levels all checked out. I recently went to an endocrinologist because I was having some initial thyroid problems, and there is a lot that they can check for you (estrogen levels, testosterone, thyroid panels, etc. etc.). Sandi is right that the thyroid can have huge effects on periods, so if you have problems with any of the thyroid hormones that could result in some of your symptoms. For the last few years my periods have been coming more frequently (23-24 day cycles with 9 days of bleeding is practically half on and half off). It turns out that thyroid problems can affect cycle duration and since I have started taking synthroid (only for the last 2 months or so) I am already seeing a slight improvement and my periods are spacing out a little bit more. You definitely need to check your thyroid and hormones to see what is going on. Figuring things out is really more than half of the battle. Doctors do not know everything, and no one told me to go to the endocrinologist. I followed up because of some symptoms and think that you really have to be proactive with whatever problems you are having and be stubborn until you get labwork and some answers that make sense. Bleeding every other day but having your gyno tell you this is fine is NOT a good way to live. You have to get the right doctors (and new doctors) involved.

I'll reply to your other message about your ITP treatments later, but just quickly, you also need a new hematologist. If your doctor only gave you IVIg when you needed treatment, and only mentioned Prednisone or Splenectomy, then that doctor is living in the 1980s and is VERY unfamiliar with ITP treatments. There are so many new treatments that have come out since only those three options, and there should be no discussion of splenectomy without talking about Promacta, NPlate, Rituxan, etc. ITP has its very own treatment options now!

Keep in mind that some hematologists really don't see many (or any) ITP patients and may only know what it is from whatever random old things they may have learned many years ago. Lots of hematologists focus primarily on oncology or other blood conditions and may really not know much about ITP. I've gone through LOTS of bad hemos in my years, and you really have to shop around until you find one who has a clue about ITP. We've heard horror stories on here of some BAD doctors and how poorly they manage ITP treatment.

Hopefully none of this discussion is discouraging. Trust me, once you figure things out and work out sensible treatment protocols so that you aren't bleeding and anemic all the time, life will really improve. You just have to be a bit tenacious and don't waste time with doctors who give up on you and don't know what they are doing

That's actually really cool that they let you do it at home. I flat out asked and was told no. Throughout the years, I've given myself insulin shots, allergy shots, testosterone shots (which hurt like a son of a gun), but for some reason they wouldn't let me do these. Still not sure why.

My wife certainly seems to think that there is. I've been a type one diabetic for 25 years and had ITP for 8 years. Both are autoimmune related. Anything is possible. I've tried Viagra, Stendra, and Cialis. Stendra probably worked the best (for me), but all of them can leave you with a splitting headache and none of them are covered by insurance. I would recommend getting your testosterone levels checked. I gave myself t-shots for years (they hurt like an SOB), but helped probably more than ED meds ever did.

I found that either taking testosterone shots or using Androgel helped. Androgel is SO much cheaper than it used to be but the testosterone shots cost me about $25/month without insurance (ins wouldn't pay for it). An 18-23 gauge needle hurts - not going to lie - but I had more energy and more desire when I was using it than without.

I actually only became aware of my low platelet count after a routine blood test and checking my testosterone levels... which are also low. Wondering if anyone has heard of a link between testosterone in men and ITP?

Interestingly Danazol which is a modified testosterone is very occasionally given to treat ITP. Not that that shows anything either way. Do you have ITP or just a low platelet count?

I have ITP