ITP found me....

I did WinRho twice this year. When I told the doctor she couldn't have my spleen, and I didn't want to do Rituxan, she finally remembered WinRho. It doesn't seem as popular, but it worked well for me the first time, for 3-4 months. The second time my counts only stayed up for about a month and the side effects were not pleasant (nausea, chills, bloody urine, anemia, exhaustion, bad headache, etc.). I was infused with it in about an hour and a half, and they gave me a liter of saline (that's a lot!) to try and keep my side effects down (didn't work). I do think WinRho is worth a try, especially since you're weary of Rituxan (like I am). Good luck!

I would have WinRho before I would have Rituxan - but that is me. And it is a treatment so it can be discussed with a doctor.

I am going to see a hematologist for the first time since the end of 2003. I will ask him about WinRho - I want to know if it is out of the picture.

dbtkrieg - your dress is beautiful! Sorry about the side effects you had.

I'm glad to see someone is still using it. It's fading away. I would, and did, use it before Rituxan too.

I had also asked the doctor about WinRho over a year ago--and he had advised me against it; but, this wasn't my regular hemo. When I see my hemo the next time, I will ask him about it. I tend to have a bad reaction to a lot of meds, but did okay on IVIG.

Im at 22 today. Theyre sending me for an ivig then starting the 4 days 40mg decadron, while still tapering off prednisone (very fast). He shot down the idea of promacta, forgot about winrho at the time, he stated his next line of defense was rituxan, then splenectomy.

I did the Decadron in a series of 4 times--each spaced two weeks apart. This might work for you. Remember, he can't force you to do a splenectomy. Sometimes because you are very young, the doctors can be forceful.

Do not worry about Rituxan. Even thou it did not do me any good I had no side effects and so much easier than steriods.

Count was 51 this morning, had another round of IVIG, another tomorrow morning also. 2 days left on dex, last night was bad bad, headache, dizzy, light headed, all of it. Not so bad tonight, less severe but still all the side effects that are on the list just about.

Just thought I'd chime in as another anti-D user. Actually, my son, Brady (15 yrs. old) uses it. He used WinRho at the beginning (10 years ago) then switched to IVIG when the WinRho stopped working. About 5 years ago the IVIG stopped working as well and always presented terrible side effects so we went back to WinRho for Brady. It is administered slowly, with saline before, during and after, and has been great for Brady. He probably only needed it once a year for a couple of years. His last treatment was in March, 2010 and he was holding steady with 50k platelets when we checked a couple of months ago.

One other note: A few years ago, the doctor suggested Brady use Rhophylac, which is an anti-D product, but a different brand. She said that they had been having good outcomes with it with fewer side effects. Although Brady responds well to treatments he always has gotten the horrible side effects of everything, so that's why she suggested it. Anyway - Rhophylac gives Brady far fewer side effects and a great response.

The black box warnings are scary and I'm glad we haven't had to use anything over and over in the recent past, but WinRho/Rhophylac have been great for Brady.

I just wanted to mention that when you finish your next two days of dex. you will probably feel really tired since they drop you off the treatment cold turkey. But, you being young, you should be able to bounce back (and, hopefully, your platelets, too!). I am in my 60's and was able to handle it.

Good luck to you.

Correct me if I am wrong here. It seems like alot of the other treatments have to be done so often to achieve good counts. Once tapered the counts drop and more treatments are needed. I do not see how all of these other treatments are less dangerous for the body than Rituxin. I have had two treatments of Rituxin with great results and no side affects. I know we all respond differently but it seems like alot of people are so scared of Rituxin. The side affects of the other treatments time after time can't be any better for the body.
Just wondering what your thoughts are.

Dean,
I agree - if the Rituxan gives you a remission it's wonderful to be away from treatments. I didn't mention Brady's whole history, but he did try Rituxan way back, maybe 6 or 7 years ago. He had the four infusions with absolutely no side effects. Unfortunately, his counts didn't budge. I''m always woried about every treatment and I hate putting those drugs in Brady's body but sometimes there isn't a choice (low counts below 10k bring bleeding for him).

It's really hard to explain what might work for one person and not for another. But, Dean, you are correct in saying that a lot of different treatments are not good for the body. Sometimes you just need to decide one that you are going to try and stick with that one. If it doesn't work, I think you then need to give you body a rest. I was just reading the article on PDA that talks about older people and how they don't do well with a lot of these treatments and they have bad side affects.

There was one person on N-plate last year--and that even stopped working for him. You need to give your body a rest between the treatments (this is just my opinion).

I don't think that the side effects or dangers of all the drugs are equal. Rituxan can cause death whereas something like prednisolone tends to cause other sorts of side effects and fewer permanent ones with a short course of treatment. Same with the immunosuppressants.. they don't cause immediate death.

How many deaths are there from Rituxin and how many might have been due to an underlying health issue that was unknown at the time of treatment?

I have seen people use Prednisone once and get years of remission. I have seen people use Win-Rho and find that they only needed it 3 or 4 times a year. I knew a guy who took Danazol for many years and had normal counts with no side effects (ha - he was the only one though). Treatments are different for everyone.

I tried Win-Rho six times and found it to be quick and easy. I would have stuck with it if it had raised my counts, but it didn't. Tamar treated with it every few months for years with no side effects and no major lifestyle invasion. Not a bad way to go. Melinda had one treatment and has been treatment free for years.

Anyone who has had a bad reaction to Rituxan can probably attest that it wasn't worth it. I'm one of them and yes, I did apparently have an underlying disorder that no one could have anticipated. Yes, it worked for me, but I really paid a price. I'd rather go back to dealing with ITP. However, I am still an advocate for Rituxan in certain cases because it does wonders for a good many people. Deaths are very rare and they are not usually linked to people who have ITP (mostly cancer-related). I do think that it can be overused though and I hate to see that because it should not be taken lightly. I think maintenance doses are a joke and I think everyone should at least try the lower dose rather than the usual full dose.

Anyone who has had to have a hip replacement due to Prednisone use would probably say that Prednisone is horrid....most of us think that anyway. But it can be useful initially and I think some people who attain long remissions were probably acute anyway. You wouldn't want to use Rituxan on those people....it wouldn't be necessary.

I see a lot of people go down the treatment line, usually out of necessity. They find that the first or second or third treatment just isn't accomplishing what they expected. Sometimes it's because the doctor strings it out too long or because the response just isn't worth the time involved or the side effects.

Every situation is different and everyone has their choices, mostly based on what makes the most sense to them. Everytime someone tries a new treatment, it's a gamble. Roll the dice and hope to win. I can never understand why anyone would choose splenectomy, but I do have to respect the decision and hope that the individual really weighed the pros and cons.

No one goes into ITP knowing what to expect. They go with what the doctor says at first until they gain some wisdom and can make informed decisions about the choices. I often wonder how many people with ITP are out there and never realize that they have options. I'll bet it's more than we think. I couldn't imagine just blindly dealing with ITP and that's why the PDSA is so great!

Sandy, that was very well said. You have so much experience! And, you have done so much research! It is also sad when we just blindly do what doctor's say. Sometimes they just try to treat each patient the same way with the same treatment (my doctor operates this way at times). You are so right; we all react different to each treatment. Each person with ITP needs to make their own informed decision.

Dean wrote: How many deaths are there from Rituxin and how many might have been due to an underlying health issue that was unknown at the time of treatment?

Deaths from rituximab are caused precisely because the person didn't know they had a dormant infection with the JC virus but most do have the virus so..

That is not to say it shouldn't be used. Just that it should be used when other things have been tried and failed. I do believe there's a sort of line of treatments that should be tried in order. I would put rituximab near the end along with the TPO drugs which I also think are over used. I also don't understand why doctors don't use the lower dose of rituximab which has been shown to be as effective. If I were to have it I would insist on it.

Ann wrote: I also don't understand why doctors don't use the lower dose of rituximab which has been shown to be as effective. If I were to have it I would insist on it.

Because - I'll bet there are a lot of doctors that are not aware of the lower dose. AND, people tend to think that more is better. Larger dose = higher counts and longer remission. Not necessarily true.

My count was 93 thursday morning, currently no side effects, nor major crash from the dex. 5mg of pred still. wont have a cbc until wednesday, but my hema mentioned either win rho or rituxan next if no improvement. Ive been busy so unfortunately i couldnt keep up with the posts all the way, but how i feel is if it works or has worked im willing to atleast try it.

I'm from st louis also and I also just became diagnoised with ITP and wondered if you found any doctors which seemed to you very knowledgable.

I wish you well and hope you can send me in the right direction.

Mike