Fiance diagnosed with ITP

2 weeks ago my guy was diagnosed with ITP, platelet count of 8. He's been on prednisone 60mg for 2 weeks with a short spike to 67 but has since dropped to 27. Hemo wants him to go on a new trial being run at the hospital where he would be put on 3 drugs simultaneoulsy - dexa, rituxamib and cyclosporine for 4 weeks.

We're not sure whether to go on the trial this early on. I've read about the side effects of each drug and they are scary. however the trial, when done previously has shown good results for remission. He's young, active and showing side effects to the prednisone inclusing insomnia/mood swings. It is tempting to think that in a little over a month he might be past all this for a long time, but then again the side effects from having three drugs bombarding him could be bad and the long term effects unknown. Has anyone been in a similar trial. Also, is it worth just waiting to see if they go up on their own? He only found out he had ITP from a routine cholesterol check, slight bruising being the only symptom.

Thanks,

Jess

Jess, Sorry to hear the Dx of ITP regarding your guy. I don't have experience with any drug trials but want to encourage you both to become as informed about ITP as you can. Knowledge is a tremendous weapon against the fears and anxiety of the Disorder and the drugs. Those side effects of pred are legendary and I think everyone with ITP hates those effects. Compounded is the unknown if prednisone helps control the ITP or not (doesn't mine) but I still had those same side effects for months as we tapered off it over 12 weeks. Hardest was being aware of the moodiness and impact on my family, yet unable to control moods which compounded my frustration and anger about ITP.

ITP is very scary and perhaps amplified fears due to the limited medical knowledge of this rare disorder. Every drug from aspirin to those used to treat ITP have potentially serious consequences, but we seldom realize or think of them. We do perhaps scrutinize the ITP Rx and it's a very hard and personal decision about a treatment. We are generally conditioned to expect there's a "treatment/cure" for almost everything. If such a treatment or cure were known, this group of compassionate ITP'ers would know of it.

I anguished about the side effects of Rituxan for weeks as my condition worsened and that Rx, and its risks, seemed increasingly likely. It doesn't help there are no guarantees whether any treatment will work (sometimes yes, sometimes no). What if I accepted the risk and it didn't work and one of those low risk side effects occurred? Should I "live" with my low counts or was I being unrealistic in accepting such a treatment? You can drive yourself crazy trying to decide! I eventually accepted the Rituxan treatment and thankfully it "worked" to increase my platelet count & no side effects.

I encourage you and your guy to use this site often, for knowledge, for support, for questions and for venting. You'll find a lot of that happens here - we've been there, done that! We can't eliminate the fears but we can share experience and knowledge.

I don't know if I'd like to be on those three drugs all at the same time, they each have really bad side effects, so taking them together may make side effects worse and u wouldn't know which drug is actually working and which one is doing nothing, I'd want to know why they think using these drugs together would be benifcial to him and why they think the outcome would outweigh the bad effects from the drugs before I'd agree to do it.

Welcome to the "family" Jess. Sorry to hear about your fiance.

I did Rituxan last Sept/Oct. I took a dex pill for the 24hrs before treatment, but only then. I've never done cylcosporine, so can't help with that question. My counts have been in the normal range since. Has Win Rho been mentioned as a possible treatment? What about IVIG?

I agree with Steve about checking out this site often. You will get a lot of opinions, support and friendship on here.

When is the big day? Congratulations.

See the July 2010 Newsletter here on the site.

DEXAMETHASONE PLUS RITUXIMAB YIELDS HIGHER PLATELET RESPONSE RATE IN CHRONIC ITP PATIENTS
In this Italian study, patients were separated into two groups, one that received four days of dexamethasone (a type of corticosteroid) and another that received four days of dexamethasone plus rituximab (Rituxan). After six months, 63% of the patients in the dexamethasone plus rituximab group had a platelet count greater than 50,000 versus 36% of the patients who received only dexamethasone. However, the patients receiving combination therapy had more adverse events.

Zaja F, et al. “Dexamethasone plus rituximab yields higher sustained response rates than dexamethasone monotherapy in adults with primary immune thrombocytopenia.” Blood. 2010 Apr 8;115 (14):2755-62.

www.ncbi.nlm.nih.gov/pubmed/20130241

I have never had to do pred, but as a long term poster here, I can fully empathize with the side effects of 60mg of pred. Check out the treatments page to be sure, but I believe that dex is given in 3 or 4 day pulses and it can be tough for those few days, but some folks actually prefer that to the continous use of pred. Hopefully one of them will see the post and provide input.

I used Cyclosporine for a couple of years, with 1-3 week Dex pulses thrown in on several occasions.
I would not wish Dex use on anyone. Works fine to bump me up in emergencies, but it's very nasty stuff.
If you think the insomnia/mood swings are bad from Prednisone, wait until the Dex kicks in.
I wish you both luck. I opted for Promacta and haven't had to take any Dex since.
.

I would not wish the effects if cyclosporine on anyone either, I hated the effects it had on me.

Tough call. It just might be the ticket to remission though. Rituxan by itself can also do that. If it were me, I think I would do the Dex with the first Rituxan infusion only, skip the Cyclosporine altogether, and finish off with the rest of the Rituxan infusion. It doesn't have to be all or nothing.

I heard people talk about IVIG what is that? I am on dexamethasone now and thinking about Rituxan. My counts are 26,000

Thanks for all the comments. His platelets have since gone up without the trial, he'll be weaned off the pred slowly and if his platelets stay up then no trial! If not we've decided to go ahead with it.
Thanks again for the support

Brenda, if you navigate to the top of the page you'll see Treatments > Conventional Treatments > Immunoglobulins and it will cover IVIG.

You might get more responses if you start a new discussion thread We sometimes misses questions inside another discussion topics.