Rituxan

Julie,
I don't think anyone here would want to say 'go ahead and try it again' because we don't know, maybe you will have a more severe reaction.

I can tell you this - reactions are most common during the first infusion. Many people have a reaction to the first one and then don't react to later ones. Shortness of breath is one of the commoner reactions. Often times they stop the drip, give you some meds, then start up the drip again, and keep it slow. I don't know why they didn't do that with you.

It is possible to have a serious allergic reaction and anaphylactic shock, or something called serum sickness. Those are both very serious. Sounds like you have to talk it over with your doctor and weigh the risks.

I had an allergic reaction to my last Rituxan infusion - it was severe chills during the infusion and severe hives a few hours after (lasting a week). While my doctor was willing to do more Rituxan, Dr. Liebman at conference said I should never ever have Rituxan again. One reason was that the allergic reaction was not to the first infusion but to a later one. I would not use it again.
Erica

Julie - if you truly had anaphylactic shock, you probably shouldn't do Rituxan again. That is totally up to your doctor. There are other options to think about.

Sandi, you are right , not everything is reported by every user and I didn't mean to give that impression. The warnings and statistics are mostly gathered during the drug trails in which all effects that users report are documented. So I hope that clarifies how I can say what I did.

Bottom Line dcurtis is that it is a big decision. I really do get how scary it is. I was sure after doing my initial research on Rituxin that I wouldn't take it. But here I am, going in for another infusion. I hope that whatever you decide you are well and at peace. Good luck

Thank you Kas. I think I am going to hold off for now. I just don't think my platelets are at a level where I need to call in any "big guns", especially something this scary. I may have to resort to the Rituxan in the future, but I am hoping not.

Does anyone know if hormones play a role in ITP? I don't know why, but I keep thinking that my drop is due, in part, to changing hormone levels due to getting close to menopause. I need to research that and see if I can find any correlation at all!

I really appreciate everyone's help here. I think this is such a great place to be able to come to, get help and information.

I saw the doctor yesterday and my count was at 259,000!!! Im stoked about that!! She is having me try to taper off the Prednisone again to see what happens. She is considering trying the Rituxin again but my family is dead set against it. Im kinda 50/50 im not sure what I want to do. But her next step is spleenectemy so its a tough one!! Im praying that I can get off the Prednisone and maintain a safe count and not have to do anything. Many of you seem to have counts much lower then where I am at right now! That is what I am aiming for. Hope everything is well for the reat of you!!! Have a great weekend!!!

Julie, I would try the Rituxan before splenectomy, especially if it worked once for you already. I did the splenectomy in /06, but it didn't work. Had Rituxan in Sept./Oct. of last year. That worked. I've had normal counts since then.

Hey, 259k is a fantastic count!

Julie, 259,000 is Great! Hope you do well with the Prednisone taper. I was down today at 44,000 and that is after being on 20 mg of Prednisone for 2 weeks now. My doc is having my drop to 10 mg and back next week to recheck the levels. He is checking my blood to see if I can try WinRho.

Julie, may the blessing of many platelets follow you forever! I share Cindy's view of spleenectomy. Mine eliminated ITP for 10y but it returned. As you know from Cindy's experience for some it never works. On the flip side it does work for some, unfortunately there's no way to know in advance.

Regarding another cycle of Rituxan that's a very personal, and difficult, decision. Some people do experience a bad reaction but I quickly responded to treatment. Yours however was obviously more severe than mine. Hopefully your MD will participate in a frank and open discussion of attempting that treatment again.

I haven't followed your history to know if you've exhausted all the other Rx options but if not please consider all options, including spleenectomy. We all know the anxiety of dealing with the ups/downs of ITP Dx and Rx and the challenge of making such BIG decisions, especially if the MD isn't supportive of active patient participation.

May the presence of our Lord comfort and guide you (it was HE who guided me then, now and tomorrow) during these difficult times.

Thanks everyone, I have been feeling real tired these last two days. I had a little bit of bleeding gums this morning, hoping that its nothing. Droped to 70mg of Prednisone today and tomorrow. Im not real sure about what I want to do next if my count goes back down. Im praying that it doesnt and maybe I can get off the Prednisone and go on the wait and see plan. I havent dropped lower then 6K since being diagnosed. There are also a lot of other things that a lot of you have had that I have not. I havent had any IVIG at all. What other drugs are effective in treating this? Im really scared to try the Rituxin again and my boyfriend is totally against me trying it again. However it seems that my doctors next step is removing the spleen and Im REAL scared of that!!! I havent been reading much on here because it scares me a little. What treatments have you all tried that worked the best and had the least bad side effects? I figure if I am going to have to convince my doctor to hold off on surgery I need to decide what I DO want to do. Any and all informatin will be appreciated! Sorry I am so scatterbrained!!

I'm as confused and scared of it all as you are Julie. This site has a "conventional" methods tab at the top and I am printing all of it out to help me start sorting out what is what. I am interested in everyone's answer to your question about the treatment with the least side effects. They all seem to have scary side effects, which doesn't make choosing any easier!

I'm sure others can provide better experiential Rx knowledge than I since I've been unresponsive to many Rx except Rituxan - and there the MD and I had almost given up hope. But I can tell you there isn't a single Rx that works the same for anybody. Might work for me but not you and vice versa. That's one of the difficulties of ITP, something in our physiology allows the disorder to occur and no one knows which treatment will work for anyone - I'm sorry to say it's a lot of trial and error. The MD's do follow a protocol of tier 1,2,3 Rx as some have a better percentage of results and lower side affects than others, but it's still a guessing game for the MD's.

And many ITP'ers share the anxiety, confusion and fear. ITP seems to come out of nowhere, it's something most of us had ever heard about, and there is no "cure" of definitive treatment - duh, is it a wonder why we're anxious, confused and fearful?!

I believe that because of the low medical and scientific knowledge that it's even more important than usual for us to become informed about ITP. Due to the rare incident of ITP many doctors know virtually nothing about ITP other than what they quickly read after we show up on their doorstep. They often follow the book re Rx but some seem to rush to spleenectomy as a cure all and it isn't!

I wish we could offer better Rx guidance but we need to be honest, no one knows. As if the fear of ITP isn't enough, there's fear of the Rx. But then again, most any illness treatment has nasty and potential dangerous side effects but we don't typically read about them so ignorance is bliss.

You'll hear it often here... be active in your Rx decisions... learn all you can so you can talk knowledgeably with the MD... ask lots of questions here and your knowledge and confidence will grow. With knowledge and confidence the fear will fade. I don't think it ever disappears but it will diminish.

Know there are lots of people and experiences here ready, willing AND able to help.

Curtis:

It can be confusing. I know it seems overwhelming to decide which treatments to try, but I based mine on cost, whether or not remission was possible from a certain treatment, side effects and length of time the treatment would take.

For example, I tried Win-Rho first and would have used that as my treatment of choice, but it didn't work for me. When I say "didn't work", I mean that I never got any rise in counts. I had five treatments, and they were pretty easy. I got the 5 minute IV push so I would run to the doctors on my lunch hour, get the treatment and be back at work before lunch was over. I had slight flu-like side effects, but nothing I couldn't handle.

After that, I tried and responded very well to Prednisone and did that about five times over a period of 5 or 6 years. However, that got old and I got tired of those side effects and the fact that I couldn't do my best at parenting or work. It was a horrible experience and seemed to get worse each time. That is when I decided to try something else.

I knew that IVIG was a lengthy treatment, expensive and is known to be a temporary solution. Because I work full time and not missing work was a priority, I nixed IVIG. Some people do quite well having an IVIG infusion every 4 to 8 weeks, but I couldn't take that much time off of work, so I decided to try Rituxan instead. The first time I did it, I got 13 months treatment free. Yes, I did have to miss 4 days of work to get those infusions, but using IVIG would have ended up costing me much more missed work in the end.

There are a lot of thing you have to take into consideration. Reading the side effects can be scary, but most people do not experience the listed side effects. Asking here would probably give you a better idea of what to expect. All of the treatments list scary side effects, but that doesn't mean they will happen.

Sandi, I am working full time and going to school almost full time, so the time missed is an important consideration for me, as well. Are you talking about needing to miss work due to the actual time it takes to get the treatment, or missed days from side effects?

I got my Rituxan on Fridays and only missed Friday - back to work on Monday. I could have gone back to work the next day but just wanted to play it safe. Most people are fine the day after Rituxan. I had a job with a lot of flexibility at that time.
Erica

I missed work only for the treatment. My doctors office wouldn't do them on Fridays, so I had them on Thursday and went to work the following day.

I didn't have any issues the day following and went to work. I slept through the first 3-4 hours due to the Bendadryl, wife brought me a sandwich then a book or music for a few and outta there! However my time in the chair was approx 6.5h the first dose and 5ish for 2-4 dose - considering travel wiped out the entire day.

I gotta say that I didn't read every post here, sorry, but 46 is a lot to read! Anyway, I went to work the same day as my treatments of Rituxan. Not the first one because it took to long, but the others I did. No side effects at all. A slight reaction to the first treatment each time but they stopped it for a bit and all was well. The bad news is the first round of treatments only lasted 7 months. I did another round of treatments last December that didn't work. That's for another post though! In the long run.....it's gonna be alright!

Thanks for all the replies, everyone!

Everyone has different experiences and lifestyles, so you have to try to tailor your treatments to fit your situation. That is what guided me for the most part.

Am getting my first Rituxan infusion tomorrow. Any tips on what to expect? Dr says will take about 8 hours - can anyone share their first experience w/me? Getting nervous about this. txs to all

Am getting my first Rituxan infusion tomorrow. Any tips on what to expect? Dr says will take about 8 hours - can anyone share their first experience w/me? Getting nervous about this. txs to all

Should have read all the posts before I joined in - after reading all the posts, feel more at ease - I was first diagnosed in 1989 with counts of 11k - 3k - prednisone and gamma globulin were used then - so after almost 4 years of in and out of hospital I opted for the spleenectomy - was IPT free for almost 15 years. Forgot to add that ITP came back 2 years ago w/ count of 4k - scared my family doctor (when he called to tell me he asked if I was sitting down) but he got me a good hematologist who told me of all the treatments there are now. Hope Rituxan works for me.

I hope the Rituxan works for you, uniquesjm. I wish you the best of luck. Please come back and share how your first treatment goes. I have to ask with the platelets that low, did you experience a lot of bruising/bleeding? I have never had platelets that low and I wondered if there was a feeling or symptom you get at that low count?

thanks for the encouragement - Found a large black bruise on my back and immediately went into my doctor for a blood test. Haven't had bleeding problems but lots of brusing. I was working when I found the bruise and got the call from my dr there. What scared the heck out of me was I was told after my speleenectomy 14 years previous that there was no other treatment. So, I thought I was going to die that day. Was so relieved to find out there were new treatments. wish me luck!

There are a lot of positive stories about Rituxan. I assume you've had your infusion by now...I hope all went well! I hope you know that it can take some time (4 to 12 weeks after the first infusion) for a rise in counts. It takes some patience.

Dcurtis - I've had counts of 3 and basically just had bruising and petechiae. I don't think I would have known they were that low without a CBC. I knew they were low, but wouldn't have expected to hear that. It didn't elicit any panic at any rate...just started Prednisone.

Thank you Sandi. I need to work on things not eliciting the panic, as since my platelets dropped 1 month ago, I have been just a bundle of frazzled nerves and that isn't good for anyone!

No, that isn't good. Most people go through that at first...I did. When I was low several times and managed to actually survive it, I relaxed and realized that ITP wasn't going to kill me. Since I did respond to treatments, there was nothing to fear.

Hi Julie: I had my first rituxan infusion yesterday. I was very aprehensive as the side effects listed are scarey. The infusion lasted almost 8 hours. I had a couple of side effects surface during the infusion and each time infusion was stopped and begun again at a lower pace. Benadryl was given to me twice as was tylenol to help w/inflammation and allergic reactions. All in all it went very well. The next 3 should take much less time. Staff kept monitoring my vitals throughout. Very efficient and friendly. I ate breakfast before the infusion and had no nausea at all. Hope this helps - good luck! Sharon

Im glad it went well for you! My doctor wants to try the Rituxan again if we need to. Currently my count is ok this week it was 191K. I am tapering off the Prednisone really fast so I am nervous that my count could drop. My daughter is coming down with something too so I am trying to be extra cautious about that too!

Sandi- Im totally with you when you said when I first found out I had ITP I was so worried that this or that would kill me, Im calming down more now that I know im not going to die!!!

My moto now is be positive and believe that everything will be ok!! And I have to have faith!!!

Hope everyone has a great day and heres to high counts!!!

I had a spleenectomy and went into remission for 14 years. ITP came back 2 years ago. I had counts of 4k, and have 100k drops in platelet counts in a week, So I was anxious to tackle some kind of treatment that would get me off of prednisone, the side effects are debilitating. If you get a spleenectomy you need to get a peumonia vaccination every so many years, because the body doesn't fight infection as well without the spleen. I'd do it again.

Had my first rituxan infusion yesterday with minimal problems. I'm hoping this does the trick. Good Luck to you.

I start my first treatment a week from Friday and am glad to get started because my platelets have been 20, then 22, then 28, then back to 22 this week. All my medical problems are gone and this is just not going anywhere.

Not scared just hoping it works.
Thanks to all of you who post on this site it makes up newbie's feel more confortable and at ease with what we are going through.

Any last tip for during the treatment or things to know or remember?
Thanks!