Search Results (Searched for: neutropenia)

  • Amin Shamji
17 Dec 2012 05:50
ITP TREATMENT IN AFRICA was created by Amin Shamji
Hi. We live in Kenya. Our son was diagnosed with ITP, after a battery of elimination tests, in August 2012. He also has autoimmune Neutropenia. Till now the only available treatment has been steroids, which we use as an emergency treatment and Neukine, a growth stimulant for the Neutropenia.
We are now into the sixth month without this going away. He has just turned 14. We tried the papya leaf extract, from fresh leaves, and the pill form from the USA. These did not seem to work for him.
He is not on any medication at the moment and has just come home from school ( he is in boarding). We will get his CBC today but expect these to be low because of bleeding gums and bruises on his shins.
Is there anybody on this forum who is from this part of the world. What treatment do you use and at what medical facility?
We are looking to take him into India for 'treatment'. Is there anybody on the forum from India? What treatment are available in India?
How about the England?
These are the only options we have because of insurance.
  • babeflover
01 Feb 2013 17:10 - 01 Feb 2013 17:14
Replied by babeflover on topic Reishi Mushroom, Tumeric & Cats Claw supplements
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 (8).
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 (8). 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 (8). 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 (8), 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 (8). 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.

References: Maitake
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References: Shiitake
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References: Reishi Mushroom
Huang K. The Pharmacology of Chinese Herbs. 2nd ed. New York: CRC Press; 1999.
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Wang SY, Hsu ML, Hsu HC, et al. The anti-tumor effect of Ganoderma lucidum is mediated by cytokines released from activated macrophages and T lymphocytes. Int J Cancer. Mar 17 1997;70(6):699-705.
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Mao T, van De Water J, Keen CL, et al. Two mushrooms, Grifola frondosa and Ganoderma lucidum, can stimulate cytokine gene expression and proliferation in human T lymphocytes. Int J Immunother 1999;15(1):13-22.
Chan WK, Cheung CC, Law HK, et al. Ganoderma lucidum polysaccharides can induce human monocytic leukemia cells into dendritic cells with immuno-stimulatory function. J Hematol Oncol. 2008;1(1):9.
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References: Ashwagandha
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Anwer T, Sharma M, Pillai KK, et al. Effect of Withania somnifera on insulin sensitivity in non-insulin-dependent diabetes mellitus rats. Basic Clin Pharmacol Toxicol. Jun 2008;102(6):498-503.
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  • Amin Shamji
24 Mar 2013 15:33
Replied by Amin Shamji on topic Low platelets AND low white count?
My 14yr son who has had ITP since August 2012 is also neutropenic. We maintain him with neukine injections. We avoid treating the low platelets unless he has a bleeding episode. We are trying to find a rhythm for the neutropenia maintenance and investigating the use of TPO drugs for the platelets. Availability and affordability of thenTPO drugs are our problem because we live in Kenya.
  • Amin Shamji
26 Mar 2013 01:10
Replied by Amin Shamji on topic Access to TPO drugs Nplate, Promacta
Patti.
Once again thank you.
Our son, Aabid, also has issues with neutropenia for which we manage him with weekly doses of neukine.
Is it possible for you to share with us a few names of the kinds of homeopath medications that the doctors used on your son? Just to get a feel of the medications that they prescribe.
We also read that in homeopathy, the docs treat the various symptoms of the condition (mouth ulcers, nose bleeds, bruising etc) and not the condition itself (autoimmune destruction of platelets or low production)?
Amin
PS We are so glad that this worked for your son and that you are still available on the forum to share with us all your knowledge!
  • Ann
26 Mar 2013 18:13
Replied by Ann on topic Amin, et al
I've had these tests done. The anti-platelet antibodies one was done by a drug company for research purposes. Last I heard they had found that a lot of people don't seem to have antibodies. It's either that their ITP has come about by some other defect in the immune system or that their antibodies involved can't be identified yet. My test was positive for antibodies but that's all I know. Every now and then they take ten tubes of blood from me but as is the way with research, we don't get to know what they find.

The anti-neutrophil antibody test I had done was also positive. I had it done to diagnose the cause of a sudden neutropenia. Bicytopenia is generally called Evans Syndrome but in my case the two cytopenias were unconnected and the neutropenia has now resolved.

Neither test is done routinely because there's no advantage in knowing. Treatment is the same whether positive or negative for antibodies. I imagine you could get tested privately for a price if you wanted to but I'm not sure how much use it would be.
  • Amin Shamji
27 Mar 2013 15:33
Replied by Amin Shamji on topic Amin, et al
Ann
If I may intrude. What was the cause of your neutropenia and how was it resolved?
Sandi
Yes, our doctor has mentioned Evans Syndrome but reckons that the management does not change.
I guess one reason why he has talked of antibody tests is because we keep looking for reasons for the condition.
He has also suggested a repeat of the BMB or aspirate, which we are resisting. We do not think it is necessary.
Your opinion?
  • Sandi
27 Mar 2013 16:12
Replied by Sandi on topic Amin, et al
Amin:

Under normal circumstances, I do not feel that the biopsy is usually necessary. Your son has two other circumstances though; neutropenia and non-response to treatments. I wouldn't want to second guess that suggestion.
  • Sandi
06 Nov 2013 16:55 - 06 Nov 2013 17:01
Replied by Sandi on topic Serum Sickness Post Rituxan
Lauren:

Oh my goodness. Where to start.

I don't believe in prophylactic Rituxan. Here's why. I think my last Rituxan was in 2004. I had one treatment, then got my second serum sickness episode. It was determined then that I should never have Rituxan again, but anyway, counts went up to 150 and have been normal since (that's nearly 9 years of remission). If I'd never had serum sickness, and if I'd had Rituxan prophylactically, say even two treatments a year, I'd have been given 18 Rituxan infusions for absolutely no reason since we'd never have known that my counts would have stayed up without any treatment at all.

Rituxan is a toxic drug that can cause problems over time. It can lower immunity, especially for someone with Lupus. It can raise the risk of cancer (already an elevated risk for someone with Lupus). Most of the time with ITP, there is no real harm in waiting until you need to be treated. I've never seen any real reason to prevent a drop and keep counts in a normal range if a person does respond to treatments. Since ITP can be chronic, the less drugs over time, the better.

Then there is the possibility that you did have serum sickness. It's a shame that you were not properly diagnosed, because you need to take that seriously. Your doctors should be taking a good look at that too. It's not something that should be blown off. After my second serum sickness, I was never the same. It stirred up inflammation that I have never been able to get rid of. If I hadn't been misdiagnosed the first time, I'd be a lot better off right now. Serum sickness reactions can get worse and can cause death.

Also, I've read a lot of studies about Lupus and Rituxan and the reviews are not all that great. It can work for some and do nothing for others.

There was more disappointing news for rituximab (Rituxan) and its potential role as a lupus therapy, however. Rituximab is a monoclonal antibody that depletes CD-20 B cells. Joan T. Merrill, MD, professor of medicine at the University of Oklahoma Health Sciences Center in Oklahoma City, presented data from two analyses of an ongoing trial evaluating rituximab in people with moderate-to severe lupus.

In the phase II/III EXPLORER trial, participants were taking immunosuppressants and steroids. They received four infusions over six months of either a placebo or rituximab, during which the steroids were gradually stopped. After 78 weeks, the rate of serious and minor adverse events, including infection and infusion reactions, were similar between the two groups, although there was a higher incidence of viral herpes, neutropenia and serum sickness in the rituximab group.

A study evaluating the subset of participants who showed a response to either placebo or rituximab found that severe and moderate flare rates were similar in both groups during the year they were followed. However, the average flare rate in the rituximab group was significantly lower than in the placebo group, suggesting that rituximab may increase the time to flare compared with placebo.

The results of the EXPLORER trial troubled clinicians, many of whom use rituximab for patients with lupus even though the drug has not been approved for that use yet. When asked how the results should be interpreted, Dr. Merrill replied: "while there is no evidence that rituximab works, I'm dissatisfied with the evidence that it doesn't."

And, in fact, other studies of the drug presented during the meeting show differing results.

A study in 35 African-American and Hispanic patients who received four weekly infusions and were followed for two years showed a significant drop in disease activity throughout the study in all participants, even those with lupus nephritis.
A study in 86 peopled with lupus treated with rituximab with or without other lupus treatments for an average of 15 months found that an estimated 73% of treated patients showed improvement. Overall, 10 people had severe infections and one died from an infection.

What this means for people with lupus? It is quite likely that rituximab works in certain populations of people with lupus. The disappointing results from the large, manufacturer-sponsored clinical trials may be related to the way the trials were designed. The decision to use or not use rituximab is one you should make in conjunction with your doctor.

www.lupusresearch.org/research/acr/latest_advances.html

This is all just my opinion. You have to do what you think is best for you. However, having two autoimmune disorders also, I can tell you that the number of drugs you use will increase in time and that can accumulate to a lot of meds in years to come. I have tried so many and all have come with a price. I've come to the conclusion, if it ain't broke, don't try to fix it.
  • Ann
17 Jan 2014 13:19
Replied by Ann on topic Vaccine
Hep B vaccine lowered my platelet count and my white cell count and I had severe neutropenia to deal with. It all lasted 6 months and then righted itself. The vaccine didn't work anyway and I have refused to do it again.
  • Ann
26 Mar 2014 06:11
Yes, ITP is just concerned with a low platelet count, however there is something called Evans Syndrome which is the corresponding autoimmune disorder affecting two or more low blood lines. But your son needs a full workup looking for everything else before they come to that conclusion.

Has he had a bone marrow biopsy? That would be the first thing to do.

I would also urge you that if your son gets a high temperature to take him to hospital immediately as neutropenia can cause the body to be overwhelmed quickly.
  • Sandi
27 Apr 2014 15:07
Just an FYI:


Prednisone:

Hematologic

Hematologic side effects have included thrombocytopenia, lymphopenia, and, platelet alterations resulting in thrombolic events.

www.drugs.com/sfx/prednisone-side-effects.html

Rituxan

Hematologic

Hematological side effects have included leukopenia (11%), thrombocytopenia (8%), and neutropenia (7%). Severe cytopenias include neutropenia (1.9%), thrombocytopenia (1.3%), anemia (1%), and hypogammaglobulinemia. Postmarketing reports of grade 3 to 4 prolonged or late onset neutropenia have been received.

www.drugs.com/sfx/rituximab-side-effects.html

Vincristine

Hematologic

Hematologic side effects including anemia, leukopenia, thrombocytopenia, and central-nervous-system leukemia have been reported. Myelosuppression is generally mild. The drug does not appear to have any constant or significant effect on platelets or red blood cells.

www.drugs.com/sfx/vincristine-side-effects.html
  • JJMcLaren
17 May 2014 11:21
Sometimes with autoimmune disorders people can have more than just plts affected. Wbc dropping is a sign of neutropenia and happens sometimes with viruses. They have to treat for infection more vigorously if wbc are low because the immune system is not working well. As for IVIG it is only a 3-4week coverage. Sometimes it works long enough to let those with acute itp over it but for kids with chronic it only helps for a little while. My daughter has been shown to have chronic immune thrombocytopenia purpura with an IgM antibody that fights her plts. She has had IVIg and Winnrho multiple times. I love it because then we have at least 3 weeks were we dont have to be worried.
  • johncarp25
19 Jul 2014 04:08
Replied by johncarp25 on topic Spleen destroying platelets
Hi,

When I was initially diagnosed with ITP in 2012 I had a severely low count, and I erupted in loads of bruises bleeding. At first I think they thought I might have something more sinister, I had a bone marrow biopsy and other tests, but they monitored me as I had a fairly quick rebound, from the danger zone. I was monitored sometimes weekly, (as counts fell) but more often it was every 3 months. Throughout 2012. My counts were all over the place never higher than 125. My max I would get to was 115 but never had a count as low as the initial flare up. In 2013, I developed severe neutropenia and more tests and they told me I have intermittent autoimmune neutropenia as well as ITP. I doubted the diagnosis all through 2013, as I assumed that ITP meant permanently low counts and I could not understand why mine would fluctuate so widely. Anyway I had scans of neck, abdomen and chest and all came back clear. So after driving myself mad about what was going on, finally came to the conclusion that this was how my ITP was. Just monitoring, then this year almost 2 years to the day of the initial flare up, it happened again this time count to 7 my lowest and I was put on treatment and here I am currently on steroids. So I am not sure my experience has been classic ITP either for the first 2 years at least, I seem to be fitting more of the pattern now though!

I trawled the internet and this seems to be the best place to hear experiences of others, and some people who have some pretty good advice and knowledge of the subject. I can only share my experience, I am not good on advice and I don't have much knowledge of the disorder. But as your story related a bit to mine, thought I would post.
  • Sandi
16 Aug 2014 09:13
Replied by Sandi on topic Rituxan side effects - final update
Julia:

I have Paresthesia and still have use of my arms and hands. Where did you read that there is loss of use? That usually takes many years to occur. It could also be peripheral neuropathy. Both are listed as side effects of Rituxan.

In Study 6, the following adverse reactions were reported more frequently ( ≥ 5%) in patients receiving Rituxan following CVP compared to patients who received no further therapy: fatigue (39% vs. 14%), anemia (35% vs. 20%), peripheral sensory neuropathy (30% vs. 18%), infections (19% vs. 9%), pulmonary toxicity (18% vs. 10%), hepato-biliary toxicity (17% vs. 7%), rash and/or pruritus (17% vs. 5%), arthralgia (12% vs. 3%), and weight gain (11% vs. 4%). Neutropenia was the only Grade 3 or 4 adverse reaction that occurred more frequently ( ≥ 2%) in the Rituxan arm compared with those who received no further therapy (4% vs. 1%). [See Clinical Studies.

Paresthesia 12 %

www.drugs.com/pro/rituxan.html
  • Ann
21 Jan 2015 10:37
Replied by Ann on topic Hepatitis B vaccine and ITP
And I got autoimmune neutropenia from the Hepatitis B vaccine. It was self limiting and lasted about six months. A blood test showed that the vaccination hadn't even taken and I am not immune to Hep B. I won't be trying again with the vaccinations though.
  • Sandi
21 Jan 2015 12:26
Replied by Sandi on topic Hepatitis B vaccine and ITP
My daughter was diagnosed with Graves Disease shortly after having this vaccine. I'm not sure if that triggered it or not. I mostly blame the soy milk that she drank as a baby (which was suggested by her pediatrician). I've read of links to Graves with both of those things, so who knows.

I'm glad the neutropenia resolved, Ann.
  • Sandi
22 Feb 2015 13:21 - 22 Feb 2015 16:00
Replied by Sandi on topic Taking Vitamins and Minerals - ITP
Emily:

We've got to get you to stop freaking out. A small bruise is nothing to worry about. Even people with normal counts get bruises. If the steroids don't work, that's okay, you'll try something else. My advice is to slow down and breathe. Low counts do not = death. You know that you can get counts up and you know what worked to do that, so you can just go back to those treatments.

I think you are having far too many treatments thrown at you without giving them a chance to work. All you really need to do is maintain a count over 30k to be in a safe zone. Let's even go 50k for you, since you are uncomfortable with all of this.

In a race to get counts up, we tend to forget about the big picture. We focus too much on now and don't think much about the future. All of these drugs have potential long-term side effects. One of them is an elevated risk of cancer. The more you pound your body with the meds, the more you put your body at risk. Some of the treatments can cause permanent damage to the body that may not be apparent for months or years.

Some people who start out with ITP also develop other disorders over time. Not all, but some. These can include CVID, which can be a severe immunodeficiency disorder. APS, which is a blood clotting disorder that can cause serious blood clots even at low counts. Lupus, which can be a life-altering, debilitating disorder. Neutropenia, which destroys white blood cells like ITP destroys platelets. The list goes on. My point is that sometimes the treatments (such as splenectomy) can make things more difficult for the other disorders.

As for splenectomy..... I'm glad that you're going for the Indium, but splenectomy is rarely ever necessary for ITP, especially if other meds work to raise counts. Some of the top ITP specialists don't even recommend them any more. While you're in England, you should try to see Dr. Drew Provan. He is tops as far as ITP and I've heard he has a great bedside manner. Anyway, back to the big picture. Sometimes it's easy to overlook the fact that if the splenectomy doesn't work, you're back to the same meds that you have now. Without a spleen, the immunosuppressants put a person more at risk for infection. Without a spleen, the TPO's raise the risk of blood clots. As far as predicting splenectomy success, the only thing that's been proven so far is that patients under 40 have a better shot at remission.

I'm not sure what your goal is here. Maybe if you tried to explain it, we could help you find the best route to get there.
  • Sandi
04 Apr 2015 17:07
Replied by Sandi on topic Son with mutiple autoimmune problems
ITP can appear alone, before other autoimmune disorders or after other autoimmune disorders. It can be chronic but many people go into remission. It sounds like your son has been hit with quite a few. I'm sure that is hard to handle both emotionally and medically.

My daughter was diagnosed with Graves at the age of 20. She is 29 now. She managed it with methimazole for 7 years but never did go into remission. She began to have other problems such as numb hands, neuropathy, muscle pain, etc and decided to have her thyroid removed two years ago in case those were side effects of the drug. They didn't go away. She's had fatigue since the Graves Diagnosis and that did not go away once her thyroid was removed. Her Synthroid dose is adjusted a few times a year because her TSH isn't stable. She's been a difficult case. If she had been able to get off of methimazole, she would not have had her thyroid removed. A patient still has Graves whether they have a thyroid or not. We never considered RAI as an option.

ITP can sometimes appear when a person is ill; viruses or bacterial infections can trigger it. Sometimes it can be acute and can go away within the first 12 months, so it's possible that could happen. Some people feel fatigue with ITP and some do not. It's different for everyone. Usually once counts go up a bit, the fatigue goes away. I once read a book about Graves and it listed the most common autoimmune disorders that can go along with it. ITP was one of them.

A low neutrophil count has nothing to do with ITP. A chronically low neutrophil count can indicate Neutropenia. If it was only slightly low and corrects itself, it could just be a temporary fluke that will resolve. Hopefully, that is the case.
  • Ann
12 Apr 2015 12:10
Replied by Ann on topic Possible ITP -- not diagnosed as yet
Do you know which white cells they are that are low? If neutrophils then it could be autoimmune neutropenia, they can test for antibodies for that. If low lymphocytes then you'd probably need an immunologist to order tests to see exactly what is low and why.

ITP and immune deficiencies of any sort often go together.
  • johncarp25
12 Jun 2015 13:02
Replied by johncarp25 on topic Watchful Waiting
Hi Taz / All

I have been on continual watch / wait since I was diagnosed in 2012.

Last big flare was last June, went on Steriods and other drugs to assist with the side effects. Although I had no choice at the time, I have opted to try to refrain from treatment where possible. My counts go all over the place, rarely are normal, so have never been discharged from hospital follow up (outpatient). The frequency of bloods and other tests have been dependant on what counts are like. When I go low, they want to see me, more frequent.

The hardest thing I find is knowing when to go back in, in between. My ITP relapsed in March, after about 9 months remission after Which the doctors suggested splenectomy and alternative meds, but I have declined and opted to continue waiting.

I know my body and what has happened in the past, so try to hold back and not rush to the hospital at every sign. I currently get the nose bleeds, the rash, the spontaneous bruising, chronic fatigue and I hover almost like an expectant mother debating whether or not to go to the hospital. Controlling the anxiety around it all is tough, but I keep trying to put off hospital visits at the slightest thing.

I guess we all need to find our own way to settle into this condition, and I don't like any of the treatments I get offered (difficult patients). So sometimes think what's the point in going. I know the risks if my counts are low and somehow I make my informed choice on how I go about my life.

I learn by my mistakes, I rest when I see signs I might be low, drop strenuous / most activity that could involve risk and quietly try to sit things out. I appreciate this condition is individual, we all have different, yet shared experience so I would never advocate anyone follow anything I say. It's just my experience.

Until my relapse, my counts fluctuated like a roller coaster - since my relapse they have remained low with only slight shifts downwards and I have no way of equating any of it to my own past experience, because this time it's different again.

sorry I am rambling, I find this site useful, as after 3 years my friends are probably sick of it. As much as they try, I don't think anyone understands it unless they have it. Which is why I ramble on here every so often.
Sorry folks.
More rambling, I also have intermittent other low bloods, despite scanning every part of my body they have no definitive on any of that, I suffer intermittent neutropenia and chronic lymphtyopenia. So I figure I am autoimmune and it's clearly the badge of honour I wear. Enough said - see what my friends put up with. Over and out!
  • Ann
16 Jun 2015 15:08
Here's my experience. ITP for 9 years. Nplate trial some years later. It took seven months to get stable on it and then remission followed later. That's why I get a tad frustrated when people give Nplate two weeks and give up!

Six years later neutropenia after a series of hepatitis B vaccinations, further investigation also found low IGs, along with almost absent IgA, and the haemo referred me to an immunologist who then also found very low CD8 lymphocytes as well as the usual lack of antibody response.

Symptoms - constant ear infections since childhood resulting in some hearing loss and tinnitus. Lots of chest infections. A type of cancer some years ago that is usually only seen in the elderly, when I was in my 20s. Interstitial cystitis on and off, once severely for almost a year. It's thought to be autoimmune. Now in the middle of having enlarged lymph nodes investigated. They've been enlarged for 6 months now.

There are a few genome studies going on in the UK just now. My blood has been sent off for this one. bridgestudy.medschl.cam.ac.uk/pid.shtml It takes ages and ages to get any results back though but we're hoping to get a reason for the lymphopenia which in some ways is more serious because it causes an inability to fight viruses which often can't be treated.

Enough...
  • johncarp25
20 Jul 2015 18:34
Evans Syndrome was created by johncarp25
Hi all

Does anyone have any experience of Evans syndrome? I have had "ITP" for 3 years, but in amongst all that have swollen lymph nodes, submandibular nodes and body scans revealed I have swollen lymph nodes throughout my body. I had biopsies and they were clear, and the doctors say the nodes are smaller than anything that they would be concerned about. I have had them for about 2 years. Had all the usual viral screens - negative.

Whilst I was having a bone marrow biopsy, and FNA in the gland, I developed severe neutropenia, and the doctors told me I have intermittent immune neutropenia.

I sometimes doubted my diagnosis of ITP because of the other stuff, going on, but I think I am so far down the track that I settled on ITP. I have recently transferred hospitals and am seeing a specialist in ITP. He has done loads more tests, and I am awaiting the results. So as I guess as is normal you start researching, and I read a link that although Evans syndrome appears to be destruction of red blood cells, and platlets it is extremely rare but it can destroy neutrophils and cause lymph nodes to swell?
I will obviously get the results from the doctors test, but has anyone on here ever heard of this presentation of Evans syndrome or experienced it?
  • Ann
21 Jul 2015 03:21
Replied by Ann on topic Evans Syndrome
I've got swollen lymph nodes too. Haven't quite ruled out lymphoma yet but I'm hopeful of getting to that point. I've also had autoimmune neutropenia at one point which lasted about six months. Mine is all associated with CVID so as Sandi says to check that out would be a good idea. Maybe your latest blood tests include that. It was when I had the neutropenia that the haemo tested IGs and they came back low. The blood results for IGs take at least a week to come back usually. Let us know.
  • johncarp25
21 Jul 2015 14:39
Replied by johncarp25 on topic Evans Syndrome
Thanks for the replies, I have never heard of CVID, that does seem possible from what I have read.

I go through bouts of infections particulary ear infections, that always end in antibiotics. I have had concerns at the amount of antibiotics I have, as I can not seem to shift infections, which I put down to maybe bouts of low white cells neutropenia. Earlier in the year I had two rounds of antibiotics for ear infections and ended up on steroids to shift it.

I always thought until now that my ITP was one issue and the Immune Neutropenia was another, it seems logical that it's maybe all related and basically my body seems on the blink.

Delnstyle - I have not been diagnosed with anything other than ITP yet, I am awaiting more tests which might be to confirm CVID or this Evans Syndrome. If not I will certainly speak to the doctor about it.

Ann - Sorry to hear you haven't had lymphoma ruled out, that was also like me, I had / do get other symptoms that are signs of Lymphoma and one doctor I used to see, did talk of slow growing lymphoma and that it can / could take time to present. Although as time has past the latest doctor new hospital seemed more confident than others in stating he doesn't think so. So I think I am in this intermittent wax and wane periods of ITP & Immune Neutopenia, one thing is for sure it's a nuisance and I spend far to much time in hospital being tested.
The worst part of it, is no one other than people on here that have to live with it, seem to understand how frustrating this condition is. I get fed up of telling friends / colleagues why I am yo the hospital every four weeks, weekly or whatever over the last 3 years. Because I get on with my life as normal, and look normal - I think people think you make it up!
  • dru
21 Jul 2015 15:19
Replied by dru on topic Evans Syndrome
I have Evans Syndrome with hemolytic anemia and ITP. Evans syndrome can be secondary to CVID and your symptoms sound similar to other people who have it. it seems to be more common in children to have neutropenia and ITP related to CVID. There is a pretty good Facebook group...Evans Syndrome Community, a mix of adults with it and parents of children who have it, it is a relatively small group.

I share your frustration about dealing with this stuff and trying to have a normal life as well.
  • johncarp25
06 Aug 2015 19:22
Replied by johncarp25 on topic White cell count
Hi,

Sandi, mentioned that you can get white and platlet counts see sawing. I can confirm that is the see saw I am on.

I started with platelets, then switched to really dangerously low neutrophils. And I was diagnosed with intermittent neutropenia, which happens between bouts of low platelets. I can offer no explanation other than, I have had it / continue to get it.

The immune neutropenia means I pick up infections really quick, when I am low on white cells just a swim in a pool sets off ear infections that I end up on antibiotics for - it happened so often I give up swimming as I know I am more than likely to end up on antibiotics! I have been advised in the past to avoid travel and coming into contact with people who are ill, when I had hardly any neutrophils left. All of this was only diagnosed after I had bone marrow biopsies, lymph node biopsies, and scans of most of my upper body and viral screens, when they could find no other reason they settled on ITP and Immune Neutropenia on the basis of exclusion.
  • Ann
07 Aug 2015 04:51
Replied by Ann on topic White cell count
They could've looked for antibodies. When I had neutropenia they sent blood off, I think it was to Bristol but not sure, to look for neutrophil antibodies which they found.
  • ananta
14 Sep 2015 23:10
Replied by ananta on topic CBC question about low wbc and low rbc too
Hey Jen,
I also have my whites drop when my platelets are low. I guess technically it is called Evans if either reds or whites drop with platelets. My Dr never made a big deal about it, and they went back up after treatment when my platelets went up. Although he was pretty concerned when the whites went way low, and I had a raging infection. He sent me to the hospital, private room with a neutropenia sign on my door. Since I didn't feel sick at all, it was kinda fun, in a weird way. :laugh:
  • markhudson
06 Nov 2015 15:32
To Splenectomy or not to splenectomy? was created by markhudson
Hey guys,

So my Haematologist has once more broached the subject of a splenectomy with me. Ok so some medical info on me, I have ITP, Autoimmune neutropenia, autoimmune lymphocytopenia, autoimmune hepatitis, ulcerative colitis (sub total colectomy and right side ileostomy), i have slightly low haemoglobin and Hypersplenism.

So basically I am wondering what you think is the best idea take out the spleen or leave it in. I am not sure if there are any asplenic people here i would love to hear how post spleen life is as the info on overwhelming post spleenectomy infection has me terrorfied.

I know that taking out my spleen might solve alot of my immune issues but it could leave me with serious risks of infections.

So any advice or opinions would be appreciated
  • johncarp25
10 Nov 2015 15:39
Replied by johncarp25 on topic To Splenectomy or not to splenectomy?
Mark,

I have ITP, autoimmune neutropenia, persistent leukopenia (think that's right for low lymphocytes). I was diagnosed in 2012, like others had bone marrow, scans, biopsy of neck lymph nodes the lot. Suffered low counts on and off platlet and neutrophils on a roller coaster. Steroids etc . My original doctor wanted my spleen out, and after consulting with the great many wonderful people on this site, I got a second opinion with an ITP centre of excellence. He was / is against spleen removal for me. Each case is on its own merits and we are all different, but I think if I had not have asked here and took on board all the experience here, I thinki would have had mine removed. However, I am glad I didn't as one doctor told me there is no going back once it is gone it's gone. For me I was nervous because of my autoimmune neutropenia, at one point I hardly had any neutrophils in circulation and a dr, told me to stay off work as my risk of sepsis was too great, I was monitored and it recovered. I really wouldn't want to be in that position without my spleen if it is such an important part of my immune system. I decided if most medical advice was to remove, I would defo get the scan to be certain the destruction was taking place there. I am not sure of all your history, but for what it's worth, after all this for me after nearly four years my latest counts are nearly normal. I have tried desperately to understand what is going on in my blood ( even my GP calls me a medical mystery). But after riding it out, I have blood results I thought I could only dream of. They will probably dive again, but at the moment I hope that soon I will be free of this, at least for a bit.

I wish you well with your journey and the decisions that you make.
  • Ann
14 Nov 2015 06:08
Replied by Ann on topic Blood Test results
Well, neutrophils are white cells so if the neutrophils are low, the whole white count will be low, so it's possibly just the one thing to worry about. Neutropenia can be an autoimmune thing similar to ITP or it could be any number of things. It also depends as to how low it is whether you need to worry and what it's usually like.
  • Rob16
02 Dec 2015 17:45
Replied by Rob16 on topic Starting Rituximab treatment
Yes, I would want to rule out MDS, but there are autoimmune conditions that can cause anemia, like autoimmune thyroid or pernicious anemia, and autoimmune diseases tend to go together.

You are being treated with rituximab? Rituxan has been associated with neutropenia and pancytopenia in aftermarket studies. What is the timing of the onset of your anemia and neutropenia wrt when you began various treatments?

Lots to investigate and rule out. I hope you have a really smart hematologist!
  • johncarp25
02 Jan 2016 18:32
Replied by johncarp25 on topic Is ITP "Progressive"?
Hi

ITP doesn't appear progressive to me, I was diagnosed in 2012, extreamly low counts. Had all tests bone marrow etc. In the last 4 years my counts have never quite reached 150, they go up and down and have only been extreamly low twice. Steriods have worked for me, nasty side effects though and once off them, they drop back under 150.

I also have issues with low white blood counts.Like Sandi mentioned on steroids my white counts also rocketed. After more tests biopsies I have been diagnosed with intermittent immune neutropenia as well.

My Heamatoligist uses the expression that my disease " waxes and wains" . I had struggled getting my head round it at first, but after finding this forum and getting the experience and advice off everyone on here, feel more comfortable with it. It's a nuisance but now for me nothing more than that. I just wait for the next inevitable relapse but just get on with life as normal, and react when I get the signs and symptoms that I might be running low.
  • Rob16
06 May 2016 13:34
Replied by Rob16 on topic Four Years with No Answers
According to the National Organization of Rare Disorders:

Evans syndrome is a rare disorder in which the body’s immune system produces antibodies that mistakenly destroy red blood cells, platelets and sometimes certain white blood cell known as neutrophils.

My comments assume you have Evans Syndrome or some similar autoimmune cytopenia.

A good general article:

emedicine.medscape.com/article/955266-overview
Medscape: Evans Syndrome


I would steer clear of splenectomy:

emedicine.medscape.com/article/955266-treatment#d9
Medscape: Evans Syndrome Treatment & Management
Splenectomy does not have a clearly established role in the treatment of Evans syndrome, but it may be considered in refractory cases. Splenectomy may improve the CBC and reduce steroid dependence; however, relapses are common and, in most cases, occur within 1-2 months after the procedure.
According to a national survey, splenectomy provided a reported duration of response that ranged from 1 week to 5 years; however, the median response duration was just 1 month.[15] The risk of postsplenectomy sepsis appears to be increased in children with Evans syndrome, especially those with pancytopenia.

Because of its rarity, information on treatment for Evans Syndrome is limited, but there are many treatments for ITP left to be tried. Some may work when others don't, including dapsone and danazol.

One that you won't find on any list is Sirolimus. A very recent study showed Sirolimus (Rapamune or rapamycin) may be effective in cases of multiple cytopenias, e.g., anemia + neutropenia + thrombocytopenia. The following study is small, but it does show a strong effect:

www.bloodjournal.org/content/127/1/17
Sirolimus is effective in relapsed/refractory autoimmune cytopenias: results of a prospective multi-institutional trial

  • Sandi
16 May 2016 11:32
Replied by Sandi on topic Joining the club of ITP
Well, I don't think that anyone is ever going to specifically study a direct connection between ITP and arsenic, so that will never be established. Arsenic in the diet cannot possibly be a good thing so avoiding it will not hurt. Arsenic is toxic and levels build over time.

Here are the hematological side effects of arsenic:

Hematologic

Hematologic side effects including leukocytosis (up to 50%), anemia (up to 14%), thrombocytopenia (up to 19%), febrile neutropenia (up to 13%), neutropenia (up to 10%), disseminated intravascular coagulation (up to 8%), and lymphadenopathy (up to 8%) have been reported.[Ref]

www.drugs.com/sfx/arsenic-trioxide-side-effects.html
  • markhudson
17 May 2016 18:07
Hey Guys was created by markhudson
Greetings,

So I know I have not been on in a while and I just wanted to fill people in on why.

First for those who don't know me I have ITP, Autoimmune Neutropenia, lymphocytopenia and Hepatitis as well as previously having Ulcerative Colitis corrected by a Colectomy leaving an Ileostomy

On the 27th of December 2015 I was taken into hospital unable to move much as all my joints aches and where slightly swollen. When I was admitted to the ward they immediately sent me to the High Dependency unit where I became paranoid and my Sats tanked to low 80's. It was decided that i would be placed in a Coma to try and protect me, placing me on a ventilator and feeding me via an NG tube. Drugs which included every anti biotic the Drs could get there hands on as well as fluids and other incidentals where given via a central line.

I was in said coma for two week and came round after a short course of an IL-6 inhibitor that I can't remember the name of. During this time I lost 15kgs (33 lbs roughly) and was unable to move much. Through the next month I was able to get back to eating normalish, Moving about for short distances unassisted and moved to a normal ward after being stepped down to HDU. After about another 2-3 weeks I caught H1N1 in the hospital and it floored me for the next 5 weeks and left me in an isolation room. But I bounced back and after 4 months I was discharged (still not right but I can do most things now except open dam jars) that was a month ago. I used to be on N-Plate every week and have not had it in nearly 16 weeks do we think this is me remitting or is it just my body not recovered yet.

Thanks for any advice, comments or info you might have.
  • Hal9000
30 Mar 2017 00:49
A Clow, your daughter is very brave.

Gosh, when I read the Wiki article on Cytoxan/Cyclophosphamide it scares the pooh out of me. Really powerful, scary stuff. I guess the dose is little weaker for ITP patients. Not sure.

I found a pretty comprehensive list of ITP treatments here: ITP Handbook . In the 'Toxicities' column of Table 6 for Cytoxan it says: 'neutropenia, acute deep venous thrombosis, nausea, vomiting'. Didn't Kimberly experience all of those symptoms? Or, did she escape the thrombosis?
  • D.Mann
10 May 2017 14:16
Replied by D.Mann on topic New to all of this
www.drugs.com/sfx/clarithromycin-side-effects.html
Rare •Abdominal or stomach tenderness
•fever with or without chills
•nausea and vomiting
•severe abdominal or stomach cramps and pain
•shortness of breath
•skin rash and itching
•unusual bleeding or bruising
•watery and severe diarrhea, which may also be bloody
•yellow eyes or skin
Hematologic

Decreased WBC (less than 1 x 10[9]/L), platelet count (less than 50 x 10[9]/L), and hemoglobin (less than 8 g/dL) were reported in up to 4%, up to 4%, and 3% of patients, respectively.[Ref]

Common (1% to 10%): Decreased WBC, decreased platelet count, decreased hemoglobin
Uncommon (0.1% to 1%): Leukopenia, neutropenia, thrombocythemia, eosinophilia, increased prothrombin time
  • Hal9000
20 Mar 2018 23:15 - 20 Mar 2018 23:18
Replied by Hal9000 on topic Chemo vs b-cell depletion
As I understand 'packh1@yahoo.com' has taken both Rituxan and Cytoxin and achieved long remissions with each. This evidence suggests that those with a row 1 response in my treatments table, can achieve remission with either drug. Of course, lots of folks have taken Rituxan and the user success association with row 1 is strong with that drug.

Speaking of other drugs, user 'julia' (also row 1 response) achieved remission using the drug Azathioprine (aka Imuran). It should be noted that the side effects seem to be lower with it than Cytoxin, as described here:
"How I treat idiopathic thrombocytopenic purpura (ITP)"
www.bloodjournal.org/content/106/7/2244?sso-checked=true
"
Our preference is to use azathioprine (2 mg/kg orally every day adjusted to avoid severe neutropenia), preferably in combination with danazol (10-15 mg/kg/d), typically 600-800 mg per day, as the first approach to chronic immunosuppression because the incidence of acute and serious side effects is lower than with cyclophosphamide and the frequency of lasting remissions is comparable (20%-40%)
"
I think Azathioprine can help with SLE too. Not sure.
  • Sandi
31 Aug 2018 16:12 - 31 Aug 2018 16:13
Neupogen is to raise white cells, not platelets.

Neupogen (filgrastim) is a man-made form of a protein that stimulates the growth of white blood cells in your body. White blood cells help your body fight against infection.
Neupogen is used to treat neutropenia, a lack of certain white blood cells caused by cancer, bone marrow transplant, receiving chemotherapy, or by other conditions.

www.drugs.com/neupogen.html
  • poseymint
11 Dec 2018 19:55
Replied by poseymint on topic Kind of worried with last Blood Count
Do you have a good hematologist who will follow up and answer your questions very soon? I would call to get an appt. Looks like many things can cause low neutrophils not just cancer- * see Mayo Clinic link.
www.mayoclinic.org/symptoms/neutropenia/basics/causes/sym-20050854
But a chat with a good doctor and follow up labs would be a start. My hemo always tests LDH along with CBC CMP, I think its a test that shows if there is disease process going on- doesn't tell what the disease is but if its high, then doc would look for cancer or infection. Good luck- try not to worry, hope its nothing!
  • JJ
02 Sep 2019 09:02
Replied by JJ on topic Cytoxan
Cytoxan or cyclophosphamide is a heavy duty chemo drug with horrible side effects including hair loss, nausea, mouth sores, neutropenia and the rest. Better to try a less destructive immunosuppressant first I'd have thought. In the UK many haematologists like mycophenolate for ITP although azathioprine is also used (and is cheaper).
  • gpT2
29 Sep 2019 11:46
therapy response time was created by gpT2
Our little guy is 2 1/2 years old. Was diagnosed at 1 year with anemia and neutropenia. ITP diagnosis was added May 2019 after 2 concurrent common viruses. He has had 5 Romiplostim injections. Platelet count started in 3-4 range. It's now only 12 (with dosage increases each time). Can anyone tell me how many injections are reasonable/typical before you have an acceptable response?
And, is anyone dealing with neutropenia layered with thrombocytopenia?
  • Hal9000
01 Oct 2019 12:16
Replied by Hal9000 on topic therapy response time
gpT2, take a look through these. This is a search on this forum for the word 'neutropenia'. Just off hand I see 'Evans Syndrome' mentioned in one case. Don't know if it is similar or not.
pdsa.org/discussion-group/search.html?query=neutropenia&searchdate=all&order=inc&childforums=1&start=0&limit=50

As for injections. It can take awhile. Just because there is no immediate platelet response doesn't necessarily mean the immune system is not reacting. As you may already know, a dose is a integer number and ranges from '1' to '10'. The higher the dose the more likely a response. Do you know what dose they are up to?

You mention two concurrent common viruses. Is that like the Flu and something else, or ?
  • MelA
09 Oct 2019 17:32
Replied by MelA on topic therapy response time
Can't a side effect of CellCept [Mycophenolate] be anemia?
I really wonder if we should be telling a parent what medication/s they should give their child especially if that child has more than ITP - in this case anemia and neutropenia. Hal already suggested meds that aren't proven effective or safe for children.
  • meyes
17 Dec 2019 08:52
I had four rituxin treatments about 5 months ago. Platelets have been normal since then, but recent test shows very low white blood cell count and dropping platelets. I had a normal bone marrow 6 months ago, so hematologist said that the low white blood cell count is side effect of rituxin killing B cells. I am told that this often happens 5-6 months after rituxin, and that this can go on for weeks, while the "immune system reconstitutes itself" , and to avoid infection as white count is low and immune system suppressed.
Anyone else have experience with rituxin-induced neutropenia (low white counts)? How long did it last for you? Did you experience serious infections while white count was low? Any tips for how to manage this ?
  • Hal9000
25 Dec 2019 23:29 - 25 Dec 2019 23:31
Replied by Hal9000 on topic Rituxin and Low White Blood Cell Counts
meyes, I was just reading about Parvovirus B19 today. Apparently Rituxan treatment can cause a resurgence of the virus and it is that virus that causes neutropenia. Google is your friend. As I recall, getting the virus under control will alleviate the neutropenia.
  • Csmid12
31 Dec 2019 08:18 - 31 Dec 2019 08:19
My Story was created by Csmid12
I have read posts and articles on this support website and feel I should (finally!) include my story. There is a lot of detail and time that has passed since my diagnoses, but I will try to summarise things.

My name is Christopher Smid and I am a 41-year-old male who is married and has four active kids (ages 9 – 13). I live in Ontario, Canada. I was diagnosed with ITP 3 years ago in January 2017. It all started with swollen lymph nodes in my right groin area, which my primary physician thought was a hernia. He did the right thing and had me get an ultrasound. It was not a hernia, but swollen lymph nodes. Did blood work and there was a fear I might have a kind of leukemia -Yikes! Was fast tracked to a hematologist who ordered a CAT scan. It was okay and the diagnoses was ITP. Sounded better than cancer, but I had never heard of this before.

At that time my platelets where in the 40 – 50 range and so she decided to just keep an eye on my condition. Platelets began to drop and so we she started me on a 3 day shock dose of prednisone (65mg). At one point, I ended up in the ER because I was worried about a big bruise on my arm, which came out of nowhere, and had blood in my mouth and back end. Platelets where at 4, so we started the prednisone again.

So, over the last 3 years I have had short term prednisone treatments, longer term therapy (3 weeks and then tapering period) and IVIG. Platelets always began to drop after each successive treatment and both therapies worked less and less till they did not do anything. They decided to take my spleen out in August 2018. I got to 156. First normal report in a year and a half. Unfortunately, and rather quickly, my numbers dropped to 25 within 3 weeks. As it got even lower, she tried Danazol, then Danazol and Azathioprine combo. Did not raise my platelets much at all.

Started Romiplostim (Nplate) in the Fall of this year. After three weeks I got to 86. My Hematologist was delighted. Began to drop after that and she had to double my dose each week to the max. Eventually we quite that treatment as it was not doing the trick. On to the next one. Started Eltrombopag 10 days ago because my platelets went to 2, I wake up with blood in my mouth every morning (does not help that I am a mouth breather due to sinus troubles), and hematomas where I scratch (itchy skin). Went to the ER last night because I (and my family) were very worried. They put me on this clotting drug (something acid?) and boy did I get nauseated. Threw up an hour and a half later and do not wish to try that again.

In the end, my new normal keeps getting lower. Also, I developed Neutropenia as well, but she is not attacking that problem at the moment. I think she is running out of options, but she is very positive (and delightful) and does know what she is doing. She is a researcher and administers clinical trials for various drugs having to do with blood diseases. She wants to get me on Rituximab, but needs to get approval (a lot of regulations up here in Canada). She would also like to do an ultrasound to check for any lingering splenic tissue and wants me to try and get off my anti-depressant, which I have been on for over 15 years. SSRI drugs can affect one’s platelets. However, I have tried to get off of these meds in the past and the symptoms were unbearable. So, this concerns me.
This is the gist of my story and since I have benefited from others who have taken the time to post, I thought I would as well.
  • JJ
01 Jan 2020 04:12 - 01 Jan 2020 04:12
Splenectomy doesn't usually cause neutropenia. It could be autoimmune like ITP or something else. I'd insist on more investigation.
  • Csmid12
01 Jan 2020 10:09
Replied by Csmid12 on topic Rituxin and Low White Blood Cell Counts
I agree there is probably no correlation between splenectomy and Neutropenia. I just noticed that it arose sometime after my splenectomy instead of before. My Hematologist is not even really doing much on the white blood count front. As long as I have no serious infections and do not get sick, she is focusing on the platelet count for now.
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