ITP Help

Ive been diagnosed with ITP 2 years ago, my platelets have gone as low as 10 and treatment has been small courses of prednisone, I had a splenectomy in March, 2012 but that did not seem to help - platelets are now at 60, but I had IVIG infusion 3 weeks ago. The doctors don't seem to know the cause and now want me to have injections of Ritaximed

One thing I keep asking is if there is any correlation between high counts of Eosinophils and low platelets. It appears that when I take Benadryl or other allergery medication, my platelets appear to go up even marginally. It seems that I am getting more and more allergic to things - the newest being egg products.

Perhaps someone can help
Thanks

Hi I also had a splenectomy and it didn't help I had a remission two years after but it came back again are you at 60 because of ivig? Your doctor is he going to see if your counts stay around there cause that's not a bad count for someone with itp and way I tried rituxan and was extremely allergic hands face feet legs all blew up had to be transported from drs to er and that was with Benedryl everyone reacts in different ways you could have a reaction but you will be closely watched and should be just fine if it goes wrong, and you may tolerate it fine and maybe it will work never know till you give it a try. Just make sure the nurses are on top of your vitals and all that and if you feel the slightest funny say something new treatments are scary wish you the best

You ask an interesting question and I suspect you have already done your research. Your theory seems to make sense but I'm no doctor or scientist so don't know. I suspect your theory goes like this... Eosinophils ingest bacteria and other cells probably including antibody marked platelets. They will be high in number because of the allergies, dampen down the allergies and the number of eosinophils diminish and stop eating so many platelets.

Can you find an immunologist to ask? I'd love to know what they say.

Also be aware that with an unsuccesful splenectomy, the liver will be killing off most of the platelets so even without the eosinophilia you aren't going to get normal numbers. Rituximab works by killing off some of the white cells, mostly the B lymphocytes, and it works for something less than half the people who try it. There is research that says that low dose rituximab works as well as the usual high dose, so you might want to look into that. Always best to have the lowest dose of everything as possible.

www.haematologica.org/content/92/12/1695.full

www.haematologica.org/content/93/6/930.full

Marie, sorry to hear the Splenectomy has not given you much remission. Did your counts rise at all? Maybe wait and have a count done again to see if it continues to drop. There are alot of things that can trigger ITP. What triggers it in some may not in others. Personally, I feel my ITP was triggered by a virus and further comprimised by stress. Allergies can strike at any time. I used to be able to eat shrimp, but now am allergic to it. Not sure if it was how it was prepared or not, but I am not willing to try it again!! My Eosinophils have been elevated for many years. Had two rounds of Rituxan treatments. First lasted 16 months, second will be 3 years of remission in Nov. Have been suffering from allergies the past three days!!! I never had allergies until after being diagnosed with ITP. I wonder if the allergies are due to ITP?
Good Luck!!

Hi,
I go for my first Ritaximab treatment next week and I am having major thoughts against doing that, but feel I have really no choice. Reading about the side effects make me nervous, but this whole ITP roller coaster makes me crazy ! It seems that I have developed major allergies to most everything. My platelet counts don't remain at "normal" levels for long now even after IVIG - two weeks at the most. My platelets are now down to 22 and I suspect shall keep dropping. I don't respond well to Prednisone and am really at a loss as to how best to proceed !

I may be able to attend the Mayo Clinic, but that won't be until after the Ritaximab treatments, so in the meantime, its difficult for me to know exactly what to do !

Wmarie:

Many people have used Rituxan here with good results. Also, few people have side effects and most consider the infusions uneventful. Usually if there is going to be a reaction, it will occur during the first infusion, but patients are monitored closely and if a reaction starts, they can deal with it quickly. Most people sleep through it since the pre-meds can make you drowsy. Side effects after the infusion are very rare, but there is a possibility of serum sickness which can occur two to three weeks after the first infusion. That is basically a delayed hypersensitivity reaction to the mouse gene that is used in Rituxan. That is also rare. Seriously, most people find Prednisone side effects to be worse than the Rituxan infusions.

Sometimes with ITP, the goal of achieving and maintaining normal counts is not possible, so the goal has to be changed to maintaining safe counts (over 20,000) without treatment.

A few people here have gone to the Mayo clinic, and they did not receive any treatment options that are not listed/discussed here. I'm not discouraging you from going, just know that they don't have any secret treatments there.

Hi Sandi,
My first treatment with Ritaxum was interesting to say the least, I had a severe reaction which was not only painful, but darn scary. I was given Demoral and Benadryl and then had a sleep ! Needless to say it took all day but after that, I think all went well.
My platelets are up a little now at 21, so hopefully it stays on the increase. Three more treatments to go, so hopefully this will work.

Thanks again

W.

Well good thing that's over! I'm glad they were able to control the reaction. They did give you pre-meds, right?

They gave me Benadryl and Zantac. After the reaction I was given Demerol