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TOPIC: ITP With Systemic Lupus and MDS

ITP With Systemic Lupus and MDS 4 years 5 months ago #44350

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I have 3 different diseases and I am about ready to throw the towel in and end this! I have had SLE for 3 years, along with MDS. My labs have always been low, but over the past few months, added to my life is ITP. My doctor tried the massive dose of dexamethosone, and it worked for a few weeks but I'm back to square one. The numbers were not real - Platelets 128? In 4 weeks they are back to 37. I read that red guava can help but in Florida they don't sell them. I settled for guava juice, which I am trying now. I can't stop bleeding, feeling tired all the time, bad headaches, and depression. I am 71. I take Coumadin because I have the Lupus anticoagulant gene and my doctors will not allow me to stop taking it. My diet is limited. I had a leg full of blood clots in December 2013. I had them before, in 1998. So I am prone to blood clots - therefore, cannot stop Coumadin or eat anything that could help my platelet count. I really need some input......thanks!

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44351

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There are a few of us who have multiple issues like you do. I have Lupus, ITP and have had APS antibodies. You are not alone.

So, you have APS but also MDS (or was MDS a mistake in the post)? Is it possible that your platlets are low due to MDS? If so, you might need a different treatment than the typical ITP meds. Treating MDS can improve platelet counts in some cases. There really aren't any foods that will raise platelet counts. Vitamin C can help with bleeding symptoms and bruising for some people.

You do have to stay on blood thinners. Stopping them can result in a clot which can sometimes be worse than the bleeding risk.

What do you mean 'the numbers weren't real'? 128 means 128,000 as opposed to your 37,000 that you had a few weeks ago.

Please don't throw in the towel. If you try, I'll just catch it and give it back to you! I'm sure there are other options to try, I hope you have a really good Hemo to manage all of that. Many of them are not as informed as you'd think.

I'm glad you joined the Forum. If nothing else, there is support here and we are a close group.

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44353

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Sandi:

Thank you for being "out there" and offering your support! I did mean MDS - Myelodysplastic Syndrome, which, along with the Systemic Lupus, and taking the Coumadin has surely had an effect on my platelet count. I had been holding my own for over two years, and suddenly, the platelet counts of between 60 and 80 fell to the 30's. I assume doctors have a certain protocol to follow - i.e., the massive steroid treatment. Yes the 40 pills raised my platelets to 128, and my other numbers as well - hemoglobin, white count, etc. But they were not "real" because it was a result of taking a med that did all of this, which didn't last. That's why I said the numbers weren't real. I know when the counts fall. I am covered with purple dots again and look like I've been hit by a truck. I am bruised everywhere. The Coumadin exacerbates the situation as well. I am seeing my hemotologist on Tuesday and having labs again. His associate talked about trying Rituxin. I'd love to hear your thoughts on that - and anyoen else's if they have had any success with Rituxin and what the side effects are. At my age, and 3 years of dealing with all of this, plus family issues, I've just about had it.

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44355

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Many, many people here have tried Rituxan and have had success with it. I used it in 2003 and 2004. My counts responded well, but I had a rare reaction called serum sickness which was awful (I actually had serum sickness twice). Most people do not have any side effects, especially that one, but I have noticed an increase of serum sickness with Lupus patients here on the Forum. It is a hypersensitivity reaction that occurs two to three weeks after the first infusion. You could be just fine, but that would be one to watch out for. Other than that, most reactions occur during the infusion and are immediately controlled by slowing the drip down and possibly adding steroids or Benedryl to the mix (they are both used prior to the infusion to try to prevent that). Most people are just fine the following day.

I can imagine how frustrated you are, and hopefully your doctors are following protocol. Each of those problems on their own can be difficult and having four of them to manage would cause anyone to feel depressed. Just hang in there are let those doctors go through their bag of tricks. Things might look a lot better in a few weeks or months.

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44358

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Sandi,
Thank you for all the info - now I can look up "serum sickness." I assume it's a fever?? My problem is - and most people who develop such dreadful sicknesses - I chose the wrong parents. Did I mention I also have COPD? My Dad had the Lupus. He died at age 67. It hit all of his organs. Mom had the COPD, and also, Diabetes Type 2. When I took the steroids, my gluose was high. That's the one disease I don't have...yet...and I certainly don't want to "encourage" it with the steroids. I wish you good health. Thanks again.

Sarah

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44374

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I have two sisters and I seem to be the one with all of the problems also. Both of my parents were fine, not sure where I came from! My Mom has had lymphoma but has been in remission for about 20+ years. Unfortunately, I passed autoimmune problems on to one of my daughters, and that kills me more than anything. I can deal with what is thrown at me, but I wish it would leave my kids alone.

I don't have COPD (my Mom does) but I do have sleep apnea and other lung problems due to Methotrexate.

I answered the serum sickness question in another thread. I actually think that the serum sickness reaction I had is what triggered Lupus for me. I was fine before I had serum sickness. The first time I had it, an ER doctor misdiagnosed it as a virus even though I repeatedly told him I was having Rituxan treatments and there could be a link. Because of that, I used Rituxan again the following year and the serum sickness was much worse the second time and I was never the same after that.

One clue that I missed the day before serum sickness hit was a red circle around the site where the needle was. I had no idea that was part of the reaction. I only had that the second time though, but if you see that, it's a signal that you might be getting it.

Take one step at a time and see what happens. All is not lost yet!

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44376

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I have tried to tell my kids that they and THEIR children are susceptible for everything I have, but young people think they are infallible. I suggested at least an ANA, but no response. It appears that serum sickness affects everyone who has Lupus and has Rituxin. What about the N-Plate injection? I read that if you have MDS, it's not recommended. But my doctor did mention it. I believe, because I have so much going on, that they are running out of ideas. My SLE must have been dormant for many years. I took a shingles shot - live virus - and the Lupus came to life. I recommend that everyone who thinks about a shingles shot ask for an ANA first. Now I am really afraid of the Rituxin. Please let me know about the N-Plate. Thanks!

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44384

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There have been some people with Lupus who did not get serum sickness, so it's not all the time. I'd say about 2/3 do, as opposed to about 3/100 who do not have Lupus. You could be just fine, so it may be worth considering.

You're right, N-Plate isn't recommended for someone with MDS. Tough call there.

Your ANA might have been normal when you had the shingles shot. Mine was normal when I got serum sickness, but was elevated after that. I know I was probably predisposed to it and that was my trigger. Over and done, what are you going to do. Better in my 40's than in my 20's.

I had shingles last year (I am not a vaccine fan) and lost the use of my hand for about six months. The nerve affected the muscle and I had to go to PT for a while. It's still not back 100% but the joints on my hands are swollen so I'm losing a lot of grip from that too. Would I get the vaccine if I had to do it over? Probably not!

As for the kids, people can have an elevated ANA and never have anything come of it. I'd rather my kids not have that black cloud hanging over them, but I do tell them to stay out of tanning beds and use sunscreen.

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44385

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Sandi,

MY doctor never suggested I have an ANA test! He knew my Dad had Lupus. In Florida you can go into Walgreen's and take the shingles shot. I may have been in remission for most of my life and would never have gotten full blown Lupus had I not taken the shot. I react to every injection. I had a bad reaction to a simple tetanus shot a few months ago. This same doctor made me take it because I had a bad wound on my arm. He was supposed to send me to a wound care center but never did. I have a deep scar from it. I don't even tak ea flu shot. Haven't for 3 years. I've decided to tell my doctor NO MORE MEDS for the ITP. I read up on all of them and there isn't a one that won't make me sicker than I am now. Posey said with a count of 37, she would not take anything. I will let you know if the guava juice worked, on Tuesday when I have my CBC. I am sorry you have so many medical issues. You seem well adjusted and I'm a basket case. I went from being a great tennis player and a healthy, attractive, young looking woman to a sickly, weak old (er) woman! That picture was taken late May, of me in my tennis outfit. I play like I'm sick now. No more trophies for me - no more team competition - no more foreign travel. Most of my trips now are to the grocery store, the lab, and my doctors. This site has helped some. My husband is lousy at being supportive. He doesn't like me to talk about me being sick. At least I can get some of it out here....and you guys ar willing to listen...and to advise....thank you.

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44389

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Wait a second....most people can get away with not treating at 37k. You are different because you have APS and need blood thinners. The usual protocol does not apply. We have another member in the APS section who is going through this right now too....low platelets and needs blood thinners. I have known people who have had serious clots with counts under 20k...low counts do not protect you. N-Plate has fewer side effects for most so if your doctor is okay with that, you could consider it instead of Rituxan.

I'm with you as far as the meds. Many of them have done a lot of damage. But.... I might be worse off if I hadn't been taking them. Methotrexate was the worst and it screwed me up in a lot of ways. I shouldn't have done that one. As for the others, I thought them through and researched before I agreed. Sometimes I flat out say no, so I do control it somewhat. I don't get the flu shot either since I also have reactions to everything. Even antibiotics mess me up any more...I always get the rare side effect that takes months to go away.

I know what Lupus does to a body. I had to quit working at 50 and was approved for disability. I rarely go any where either. I went out to a water fall today to take pictures with a friend and just having to use my muscles is making me feel feverish, achy, skin hurts....I'm paying for it. It robs you of a life, that's for sure. I had to really scale my life back to just the small stuff. I did develop other interests though like scrap-booking and making video and picture slideshows....that I can do. I'm not always well-adjusted, I have many sad days, but I try not to let it get to me. I've also had almost 9 years to get used to this downhill slide. It is what it is. I am trying to fight my way back a bit; my husband and I started walking a lot. I can only do about a mile a day and he does 10-15, but I keep getting stress fractures in my feet from too many years of Prednisone and I have really weak muscles, so I can't push it like he can. I'm trying!

Yep, we are always willing to listen and I might move this post down to the Lupus or APS section. There are only a few of us, but we help each other out as much as we can.

Be careful with those juices...you don't know what's in it and you have to watch your diet to keep your INR in line! Sorry, I can be bossy. My friends call me Ouiser from Steel Magnolia's!

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44390

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P.S. I may have never gotten a Lupus diagnosis either if I hadn't had Rituxan. Luckily, it was my idea and not my doctor's, so I cannot blame him at all. Hind sight is 20/20 and I can play the "I wish I hadn't" game for the rest of my life, but that won't get me anywhere. I'd rather turn the perspective and say that I'm happy it held off until my kids were raised. I watch my family and friends on FB all having such lively lives and yes, I feel bad a lot. But I'm happy to have more time than I ever had before and I can let go of work stress and try to enjoy my boring life. I try to stay productive in other ways, never just sit and watch TV all day. There are worse things (like ALS), and I always try to remember that.

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44394

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Sandi,

What IS APS? I know I have SLE - but never heard of APS. I have the Lupus Anticoagulant gene which pre-disposes me to blood clots. I had DVTs in 1997 when I broke my heel on the tennis court and sat at the computer for hours, immobile. At tha time I had two small ones in the left calf. The next episode was a lot worse and that definitely came from the Lupus. Even being active didn't work. When my leg started to swell that Monday, I attributed it to the wonton soup we ate the night before. By Friday I could not walk anymore - I was in pain and my leg looked like a tree trunk. My RBC had fallen to 8. They had been giving me Procrit, which causes DVTs. My hematologist screwed up - the anemia was caused by a B12 deficiency. He tested me for everything but B12. They discovered that when I was in the hospital. Once they gave me a blood transfusion and got me on a daily dose of B12, my hemoglobin has been between 11-11.8. One little vitamin pill was all I needed! I'm using the same hematologist now for the ITP and we'll talk tomorrow. I don't think I want to take anything now. I rsearched the guava. It's supposed to be good to boost platelets. They also had papaya down as well, but that acts as a blood thinner, so I can't eat that. They do check my INR for the Coumadin - last Tuesday it was 2.7. If it's between 2 and 3, it's fine. Tomorrow is a big day for me. I will surely let you know what happens. Meantime, I wake up every morning lately with a bleeding scratch on my nose (something new). I have to get to a dermatologist. All they can do is spray - they can't cut. It's probably a new skin cancer. Everyone living in Florida has them.That's the least of my problems!

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44395

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It took a year and a half to get the Lupus diagnosis. I saw a rheumatologist who was more like a shrink. He did nothing for me but reead my reports and said little. I saw another rheumatologist about a year ago. He recommended Benlysta or Rituxin. At that time, my hematologist said no to both. Now it's a different story. I didn't have such low platelets at that time - I just had all the other stuff that comes with Lupus. The worst is the fatigue and lack of energy; the skin problems, the Raynaud's, and people look at me differently. As I said earlier - I can't be what I was. My tennis ladies don't want to play with a sick person. Many have walked away. I know what you're going to say - they were never friends. Right! The other day I acidentally picked up another lady's towel. She looked at me like I had AIDS and got very upset. I see HER now as a dumb person! Maybe she thinks she'll catch what I have!

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44399

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If you have the Lupus Anticoagulant, you have APS. It is Antiphospholipid Syndrome and often comes along with ITP and/or Lupus.

How is APS Diagnosed?

Physicians use a combination of clinical symptoms and laboratory tests to diagnose APS. The common blood tests for antiphospholipid antibodies are as follows:

Anticardiolipin antibodies (IgG, IgM, and IgA)
Lupus anticoagulant – a panel of blood clotting tests that may include the dilute Russel Viper venom time (dRVVT), lupus aPTT, mixing studies, and hex phase phospholipid test, platelet neutralization procedure
Antibodies to b2-glycoprotein I (IgG, IgM, IgA)

www.apsfa.org/aps.htm

I have the Anticardiolipin Antibody but have not had any clots (yet).

Lupus can take a long time to diagnose. It took me about a year and a half too. I had physical symptoms long before labs showed anything conclusive. My Rheumatologist monitored me every three months and at least tried to help me manage symptoms until I got the actual diagnosis.

I've been offered Benlysta too and choose to stay away from that one. The biologics scare me since I had Rituxan and most of the serious drugs only seem to make things worse.

I know you can't be who you were and that is hard to accept. I don't get together with friends very often either...takes too much energy to have conversations and go places. I know it's hard to start over, but you need to find other interests and people who are in a similar place as you. I know this sounds cliche, but you could try Bingo, church groups, knitting groups...more sedentary activities. Many times, the local YMCA has classes for seniors such as water aerobics that can really help you physically as well as emotionally. You'll find something. I take pictures and it's funny, when I do that, I get into another zone and forget about everything for a few hours. I have a bucket list of different types of pictures that I want to take....just a silly goal that keeps me going. You'll find yourself. It takes time.

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44404

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I have that. The first time I had blood clots, I never related them to Lupus. I was feeling fine and healthy except for a cast on my leg. I bought a tricycle and was able to ride that with the cast on. I wasn't sick then. I do go to the pool every day and do more exercise. It's the looks I get on the tennis court from certain ladies. It's not what you are now - it's what you were and aren't. Women can be a lot meaner and less accepting than men. That's society. Especially older women. Once I'm done with tennis and the pool, I start to crash. By 5pm, Ihave to sit down in between preparing dinner. Going out to dinner is very difficult for me. I am exhausted and cannot tolerate the AC in restaurants, so it labels us as "anti-social." Today is a nervous day for me....labs tomorrow...

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44409

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The blood clots are more related to APS than they are Lupus. APS is one of the criteria used to meet a Lupus diagnosis. The Lupus Anticoagulant is an antibody and has nothing to do with Lupus specifically. People can have the Lupus Anticoagulant and not have or ever have Lupus.

It sounds like you are still pretty active - tennis and swimming during the day is great! Honestly if you are doing that every day, you're doing pretty good. Staying active wil make things better in the long run, believe me! It will make a difference. Try to stop worrying about what other people think. You know the truth and that's all that matters. I don't go out to eat much either...we usually will just go and pick up take out orders. When I do cook, I start a crock pot early in the day so it doesn't matter how tired I am by 5. If we do have plans to go out, I don't do much else all day so I can save the energy for dinner. You learn to make priorities and the heck with the rest.

Good luck with your labs tomorrow. Let me know how it goes.

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44412

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I guess that's why both doctors refuse to allow me to stop the Coumadin - APS. It's a struggle every morning to push myself out of bed. If I allowed all of my illnesses to stop me, I'd never get out. Sandi - I have to push myself to do what I do. The majority of the ladies I played tennis with and won trophies with now turn their back on me because I am not what I was. It hurts that people can be so mean and have no compassion. Their tennis trophies mean more to them than people. I was never that way and never will be. I know stress is a dangerous trigger, and I live with stress now. The weekly labs and waiting for test results is very stressful. Never knowing if my headache is a simple headache or a brain bleed from the ITP is stress. I guess I have not accepted who I am even after 3 years of dealing with various issues. I'm never going to get better - and that's depressing in itself. Doctors are not magicians. They can only work with what they think can help keep me going. We'll see if the guava juice did any good, tomorrow. Thanks, Sandi, for your support!

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44417

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It's unfortunate, but most people just don't understand autoimmune disorders or the impact they can have on your life. That is the hardest thing to accept. The truth is though, that if those women cannot be understanding and stick by you, they were not true friends to begin with. Now if you had cancer and a bald head, you'd have more empathy than you could handle. There isn't much you can do about it other than let it roll off of your back and move on.

It's normal to mourn the loss of your body and your health. It's hard to give up the things you could once do and the things that you loved. I won't say that everything happens for a reason because it's hard to believe that when bad things happen, but it can show you other things in life that you may have been missing. You can choose the path you take. Every day when you get out of bed, you are choosing to live and go on. That is great! You have to find new purposes to your life even if they are not what you thought they would be. You have to find new things to be happy about and flip your perspective. Like I said earlier, anytime I start feeling down about it, I make myself feel grateful that I didn't have to deal with all of this in my 20's. There are young women (and men) who have to get through a whole life of missing out on things and struggle to get through the days. I have had many good years and I am thankful for that.

When I was diagnosed with Lupus, a well-meaning co-worker gave me a card. It said "This too shall pass". I felt like she slashed me with a knife because no, this will never pass. I then decided to give that new meaning. I decided that it meant that the feelings of anger and sadness will pass. For the most part, they did. Self-pity only pushes people further away.

When I was diagnosed, I had to keep going at work and we were so busy, I was only pushed harder. The stress was enormous and I could barely keep up. Side effects of meds left me stuck in the bathroom for long periods and ha ha, we all laughed. Was it really funny? I was injecting myself with chemo for over a year but because it wasn't cancer, no one really understood. I showed up every day no matter how sick I was because it was expected. Then my co-worker got diagnosed with breast cancer. I love her, she is my friend, but there I was pitching in for a lovely basket of goodies for her and having lunch in her honor. No one was laughing. After six weeks of radiation, she got remission and has been ok since. I'm the one who had to stop working and give up most of the things I love to do. It's just the mindset of the people and there is nothing you can do about it.

Here is an article that talks about that very thing. You could consider seeing a therapist to help you deal with these feelings. Dealing with isolation on your own can be difficult and it never hurts to get help when you need it.

lfa-inc.blogspot.com/2013/02/lets-measure-our-progress-by-education.html

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44419

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Sandi,
It's difficult participating in sports because of my bleeding danger. I think that's one reason why they hshy away from me. I cut my hand a few weeks ago, and kept playing while it bled thru every band aid I had on. I still have some close friends and they are supportive. I've also learned to "sort out" the "cancers" in my life. Besides my health, we have many family issues going on. Without going into detail, we are alone. People don't want to be around sick people - especially someone who is always sick! When I was in the hospital with a lower leg full of blood clots, and came home wth pneumonia, out of the 14 ladies I play tennis with, maybe 3 or 4 called once. The tennis pro called me several times but not "my friends." I didn't forget that - and I truly believe, as Mom did too, that "What goes around, comes around." Just as I was struck down suddenly, so can they. And I will have the same "empathy" they had for me. I will read the link you sent, and try not to focus on tomorrow's tests. If only I had a few people around me like myself, it would make it easier to cope. I went to one support group meeting here in south Florida, and everyone there was depressed and crying. I felt worse afterwards. It wasn't helpful at all. This link allows me to express my feelings and know there are people like you out there, who DO understand. I wrote an article for my community newsletter, explaining and describing what Lupus is all about. They refused to put it in - said it was "too personal." Right after I wrote it, I asked a few people if they really knew what Lupus was. Not a one! I sent my article to a few people, and then, they understood. It seems the only people who understand and know about Lupus are African Americans. I am a very low statistic - diagnosed at age 68 - Caucasian female. I guess I just got lucky in my supposed "golden years." NOT. I agree with you - if I had to spend the last 20 or 30 years of my life feeling like this, I don't know what I would do. When you get sick, people go only two ways - they leave or they support. The majority is the former. I will email lab results tomorrow. Have a good night Sandi, and God bless!

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44431

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Forget the Guava Juice. Down another point to 36. Hemoglobin down to 11.3. Doctor wants labs in a week. Nothing to do right now - I refused the steroids. Right now, I am angry, depressed and plain disgusted.

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44436

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Don't get too upset over a drop from 37 to 36. That sort of change can happen in a few minutes time...you could even get that difference from the same blood sample tested twice. Any type of supplement is going to take time, certainly more than a few days. Nothing happens overnight.

I know you're upset to see that your counts haven't gone up, but they are not in single digits either, so it's not all bad. You'll get this sorted out, it just takes time and you'll probably have to give in and treat with something if you want to break the cycle.

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44438

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First thing the nurse asked was about the steroids. I gave her a very emphatic NO. She then went to speak to my hematologist, and, after 20 minutes or so, cameback to me told me he wanted me back in one week and that he wasn't concerned with the numbers as much as how I was feeling, as a whole. It's not the numbers that bother me so much as the coagulation problem. I already have a small clot from a tiny pediatric needle. That means Coumadin forever. Sandi - it's the whole picture. Not just the drop. It's the hopeless let-down that happens every week. I'll be OK. I don't have much choice. Thank you for being supportive.

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44440

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I understand, I really do. Just know that you are not alone with lifetime medications, especially Coumadin. It's a common thing for a lot of people. Both of my in-laws were on it in their 50's due to heart attacks and strokes. They both died still taking the drug many years later. I have about six meds that I'll never get off of, including Prednisone. It's just a part of your life that you have to try to accept. You have to do what you have to do in life. Coumadin is better than Heparin! Everyone who has the Lupus Anticoagulant and has had a clot is on Coumadin forever. It's standard protocol.

The thing that you seem to want more than anything is to play tennis. If the bleeding risk is keeping you from that, why not discuss options with your doctor to find out what you have to do to be able to play? You might just be able to get back to it if you talk to him. Maybe if he knows that you have a goal in mind, he will work with you, but you'd have to be willing to treat as he says.

I know you're frustrated and I'm just trying to help you see the better side of things. This is something that can probably be balanced in some way and your life is far from over.

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44442

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Sandi,
I am still playing tennis 4 days a week. Every time I step onto the court I am taking a risk. I play doubles, but if I hit my leg with my racket, which I've often done in the past, or worse, fall on my head, I'm in big trouble. That's why I can't play the way I used to. I'm afraid to. I don't want to give that part of my life up. I've already given up too much.

I still believe taking the Coumadin is making my ITP worse. You say you are taking prednisone. How does it affect your glucose? It raised mine 30 points in one week. I could not accept that as I can't afford yet another illness - diabetes. My mother had diabetes type 2 and severe osteo and steroids can cause that.

I scheduled a bone density and mammo for November 3rd. I have blood work for my Primary this Friday. The lab we go to are not very efficient. Last time they did a CBC, their report said the platelets were "too low to count as they were clumping." The nurse in my hematologist's office told me to tell them to use the tube with the purple cap. When I go to the hematologist, she does two tests to confirm the platelet count. Next Tuesday, I am going to the hematologist again and they will check the platelets again - so that will be twice in one week.

My hematologist did not come out to speak with me this time. His nurse told him I would not agree to take the steroids. Apparently the steroids had a domino effect, as after I stopped them, my platelets were falling 2 points A DAY. They fell only one point in a WEEK. You are correct - it's no the numbers he's concerned about - it's a pattern he's watching. And.....they could always go up a little - miracles do happen.

I have one question, Sandi: ITP does not allow you to coagulate. HOW do you stop bleeding when you bleed? I've tried just about everything. Any suggestions??????? Maybe I missed something. The advice I've been given is "use wound seal and put pressure on it until you coagulate." They don't get it - the problem with ITP is that we don't coagulate. I keep putting band aid after band aid on, and I normally get infected after a few days, even with applying Miciprocin(Bactroban). I would appreciate any advice you can give me in that respect. I freak out when I see blood because I know I can't stop it.

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44444

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Coumadin usually doesn't make ITP worse as far as counts, but it will increase bleeding. The only fix is to get the platelets up. If you did that, you would be able to play tennis more aggressively. Most of the time after taking Dexamethasone, counts will fall quickly after stopping the drug. That is not always the case with Prednisone if a person is responsive to it. Counts can stay up for a long time. You may not have to take a high dose, sometimes a lower dose can work for a while.

Prednisone is affecting me as far as long-term side effects. I have muscle myopathy (weak muscles), stress fractures in my feet, borderline sugar levels, my teeth constantly need fillings, etc. I have to take it and it's a long explanation (Lupus related). I've been on 10 mg's+ for the past 9 years. I don't feel as if I have a choice. My Mom has osteo and broke a hip last January at the age of 76. It was a long recovery in rehab. I do keep up with bone density tests every year and try to keep my Vitamin D level normal (it keeps falling). That's about all I can do.

Many people with ITP have problems with clumping. It's not the lab. Mine used to clump so much they couldn't get a reading, even after using the purple top. I had to stop having labs sent out and just get the instant counts at the Hemo's office.

ITP hinders coagulating because the number of platelets that you have is not enough to stop the bleeding. Holding pressure on it does work and it will clot eventually. People with ITP usually have larger than normal platelets that help a lot, and we also have micro-particles (tiny platelet fragments) that help as well. It would take even longer for you because of the blood thinners, but it should stop. Getting your counts up even higher will also make a huge difference. Don't freak out, stay calm and just put pressure on it. There are nine clotting factors; platelets are not the only one.

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44447

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Sandi,
I know many ladies who are on Prednisone. They have a moon face; are obese, and have diabetes. I would never know you are on Prednisone, as you look great. That's one of our problems - we don't look sick!

I refuse to take any steroids. My Mom broke ribs, her back, her hip and her shoulder. She was hunched over with severe osteo. I still take Prempro because, so far, I don't have osteroporosis - at least I didn't 2 years ago. I have the "pre-osteo" though. I'll find out when I go for my bone density in November.

The Biotin 10,000 mcgs with Keratin has helped my hair loss a lot. I take Synthroid, which also causes hair loss, and at one time, my hair didn't grow because it just fell out. The Biotn seems to be working.

I take enough meds now. I would prefer not taking any more. If the platelets stay in the 30's so be it. If I get cut, I will insist on a wound care center. If this is the way I have to live now, I will. But all of the drugs to treat Lupus, MDS and ITP have terrible side effects and I have a better chance of dying from the side effects than the disease. I fear even a cold.

My tennis game sucks lately, as the low platelets makes me light headed. I do the best I can do. I play with a few nice ladies who know my condition and are very tolerant. I stopped allowing the mean ones to affect me. If I can find 3 or 4 nice, compassionate partners, I don't need any more. As long as I am able to go out there for an hour and a half and hit a ball - and miss it a lot - I will continue to do so. I need it for my head more than my body.

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ITP With Systemic Lupus and MDS 4 years 5 months ago #44463

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Okay, sounds like you feel comfortable just doing what you are doing. You don't even take Plaquenil?

I have to take Lupus meds because of the complications that I have. I don't know where I'd be without them. My first Lupus symptom was muscle stiffness and joint pain, and without medications, I would not have been able to work as long as I did. Without Prednisone, I can't even move. I felt sick all the time, like I had the flu. I have neuropathy and skin burning, get fevers, horrible fatigue, and brain fog. The joints in my hands are permanently swollen and we are trying to slow the progression because I'm losing use of my hands.

I'm doing okay with the meds I'm on, but my Rheumatologist keeps pushing CellCept. I have already been on and off of that several times, as well as Imuran. All those drugs do is make me catch everything that goes around and I end up sick for three months.

I am not really that overweight despite many years of Prednisone. I did just lose 10 pounds and would like to lose 20 more, but I'm far from obese. The problem has been eating whatever I wanted and not watching. Now that I'm counting calories, the weight is coming off. As far as moon face, yeah, I do have that. Nothing I can do about it though. I prefer being able to get out of bed in the morning.

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