Frustrated and confused....

I was diagnosed with ITP in February 2009. I've done prednisone, WinRo treatments. I went without treatments of any kind from June 2010 to September 2011 with my platelet counts between 70,000 & 120,000. My hemo and his assistant think I'm just stubborn because I don't want a splenectomy. I've done alot of research on splenectomies for ITP... there are so many cases that haven't worked or they only worked temporarily...sometimes with lower counts. I haven't had any major bleeding problems and I "safety up" when my counts are lower. While I hate prednisone, I haven't had to stay on it for more than a couple months at a time. Just don't know what to do or where to turn next. Any suggestions would be greatly appreciated.

Welcome. Your counts may be low but not they are not bad. I hovered around that level for awhile with no treatment. When I fell below 75k then Prednisone was used. Counts raised but did not stay in the normal range. I never had any bleeding issues even at 2k. The only visible signs I had was bruising along with Fatigue. I also refused the Spleenectomy option. I read to many sroties that did not convience me to go this route. Spleenectomy is permanent once it is out it is gone. Plus you are at a greater risk of illness. What are your counts now?
Have you considered Rituxan? I have had two treatments. First lasted 16months, second is over 2 years. Counts over 200k.

Thankyou for your reply! That's exactly how I feel about the splenectomy. My counts were between 70,000 and 120,000 until about July 2011...they went down to 32,000. They bounced between 30,000 and 60,000 until about September when they fell below 20,000. They started me on Prednisone (60mg) and gave me a WinRo IV, the counts went up a little and were back down within 3 weeks. They got down to 12,000, they gave me another WinRo IV and counts went up to 195,000. I have tapered down the prednisone to 10 mg and platelets actually went up to 197,000.
My doctors make me feel like an idiot because I don't want the splenectomy. But, my numbers aren't usually that low and I don't have the major bleeding that others have. Like you said, once it's done, you can't reverse it and you are left with a compromised immune system.
I've been documenting my levels along with my lifestyle. It seems that when I exercise, my levels tend to stay at higher levels. I told my doctor that and he informed me there was no way that would have and effect... it was just a coincedence. Since the Idio part of ITP means that they don't know what causes it, my husband asked him how he "knew" that exercise absolutely wouldn't help. I wonder if anyone else has had success with exercise or diet????
Thanks again for your reply, it is really good to hear from someone that feels the same way I do, I don't feel so isolated.

Lifestyle plays a big role in out health. Humans do not come with an "owners" manual. What works for one may not work for others. Keep doing whatever you need, to raise counts.

Thanks Dean,
I think it may be time to find a new doc. I need one that will be a partner with me to figure out what works best for me. I think mine has made his mind up that there is one way to treat ITP. He says ITP doesn't have symptoms other than peticia, bruising, etc. However, I can usually tell my husband when the numbers are dropping. I feel alot more fatigued, I have headaches, and I feel a little 'down'. That's where my frustration comes in, because I'm afraid it will be really hard to find a doc that will really listen and do what's best for my case.

Id - hello. There are a lot of us who feel exactly the way you do. I refused splenectomy myself a few times with my doctor. I was diagnosed in 1998 and still have my spleen. I have also had Rituxan twice and have been in remission since 2004. I wouldn't have a splenectomy with your counts either.

Yes, keep looking for a doctor. There are some out there who will work with the patient to decide the best course of action.

One of the Dr's I seen when my reg Dr was out, seems to think Spleenectomy is the only option for ITP. He was very through but I did not like the "when are we going to schedule a Spleenectomy" comment!!! Yes, you need a Dr that is going to work with you as it is your body.

Hi Id-

You asked whether anyone tried diet to affect their numbers. It was my understanding that data suggest diet doesn't have an effect. Nevertheless a few years ago I tried an elimination diet to see if it might help - no effect. (that is, my numbers remained unchanged in the 30- 49 range and I remained on pred).

That being said, good diet and wise excercise are beneficial anyway.

Another perspective on a splenectomy - I had mine out about weeks ago. I'll get my bloodwork today, but I am hoping I'll hold onto my 200 + reading. For years I maintained my numbers (30 - 80ish) with pred until they suddenly bottomed out a few months ago. At that time, I finally opted for a splenectomy but it was risky because of the low numbers - and I was responding to no drugs or treatments (prednisone also was no longer effective). Finally I responded to Nplate and once the numbers were high, had the splenectomy. It seems to me that being asplenic (great word: asplenic) is preferable to routine Nplate injections. And there were a few weeks there when I had numbers near zero that I wished a little I had my spleen out when my numbers were high and safe. But I wished only a little - it is a waste to spend energy on regret and high sight is 20 20 etc.

For all those years it was reasonable to maintain my low numbers for ever with prednisone and it was reasonable that I may never have an extreme drop in numbers where prednisone as well as most other treatments would have no effect.

Its not easy to weight the relative risks sometimes.

Hi Id-

With regard to exercise, I had read on this site how a few members felt exercise helped to maintain their platelet count. Also in some cases people felt they could increase their platelet numbers if they fell below what they considered normal, just with exercise.

Other people responded by saying they had tried exercise and it did not work for them and they could not see how it could make any difference.

I felt it could do no harm; so decided to try for myself, and now firmly believe exercise helps me maintain my platelet count. If I stop they tend to drop, but when I start again they hold.

I spoke to my Haematologist about this, and his comments where your platelets have held around 40-60 for the last 12mths so if you think your getting benefit from exercise then do not stop.

Benny

Hi~ Just the fact that you could go without any treatment with numbers over 70 is a great sign that your ITP could resolve itself. People often go into remission. My hemo who is a research doctor says there are many causes for ITP. Its silly for your doctor to say exercise could not help, too narrow. We're dealing with the immune system, its more complicated than that. It seems stress makes my counts drop, exercise relieves stress so stands to reason.

I left 2 doctors, one MD who was pushing for a splenectomy and acting like it would be a cure with no side effects. I'm over 50 and the odds of it working aren't that great. I left my first hemo because he wasn't listening to me, and very hard to talk to, stressful going in there. Like you, I felt invalidated. I was afraid to leave but it was pretty easy. I just made an appt with another hemo who I intuitively chose and canceled the doc I didn't like. You have to trust yourself and have to find someone you feel comfortable with.

So glad I left those doctors because the new docs are great! My hemo listens and lets me be an active part in the decision making. You can find someone who is validating, and not intimidating or narrow minded, just keep at it!

The first website I looked at when I was diagnosed was the Mayo Clinic site. It said something to the effect of with ITP the treatment can be more harmful than the disease. That has always stuck with me. Plus it says that some people are fine with counts lower than 30K if there is no active bleeding and they lead a fairly sedentary lifestyle. That is good common sense information I think and helps me to not overreact. best of luck!

I worry about the "sedentary life style." Walking, swimming, water exercises, exercycles would all be quite safe exercise even for someone worried about bleeding. I suspect most of us don't do extreme or contact sports, but a sedentary lifetstyle isn't likely to promote good health. I haven't felt that a healthy diet and regular exercise have helped my platelets, but they have helped me stay healthy despite having low platelets.

I recommend more research before you agree to a splenectomy. I wish I had done more before I had mine 7 years ago. It didn't "work." The chances of even moderate remission are apparently decreased by age--I didn't know that. I was told that my chances would be about 66% of having a complete remission.