Difficult decision. Rituxan or Nplate

Hello everyone. I was diagnosed with ITP almost two years ago. My ITP is autoimmune and is not caused by anything. I have been tested for it all. I also have a hypo thyroid (also autoimmune) as well as antiphospholipid antibodies and anticardiolipin antibodies. I have never had any problems with those antibodies and have had them and the hypothyroid a lot longer than the ITP.

I was initially treated with a dexamethasone pulse. 40mg a day for four days, off for 28 days then back on. I did this for four cycles and in May of 2011 went into remission with levels at or around 100 for almost a year. In March of this year they fell and I was put on Prednisone. They immediately went up and we thought everything was fine. I then fell and broke my ankle pretty severely. My count that was at 150 had fallen to 90 only three days after stopping the Pred.

I had surgery and was in a cast for ten weeks unable to bear weight. My platelets continued to be unmanageable without the Pred, which I stayed on, tapering slowly down, for about 3 months. Once I hit 5mg on the Pred my platelets stopped holding and began to fall again. It was really devastating because the steroids suck and I felt as if I had wasted all that time being on them and they didn't work. But as we know with ITP we don't now what will work.

I decided I wanted to watch and wait to see if they would go up on their own. Well last Thursday when I went in I had my lowest count ever at 20. I'm sure it would have gone even lower, but I was put back on Pred at 60 a day. Yesterday they hadn't fallen, but after one day were only at 21. My hema and I spoke for a long time yesterday and she does not want me on steroids anymore. Besides the side effects she is most concerned that my adrenals will fail and I will have to become dependent.

She wants me to choose between Nplate or Rituxan and start treatment soon. My concern with Nplate is the possible unpredictability of a sharp increase in platelets and the risk of blood clots especially since I have APA. I also feel like its just a bandaid. That if my body doesn't go into remission I would have to be on it possibly for a long time and it isn't really fixing anything. It's a way to buy time and keep me safe but at the same time would there be the constant worry of clotting?

With Rituxan, it scares the crap out of me, but it's one infusion a week for four weeks. I have spoken to all of the infusion nurses at my docs office and they all have had really good results with patients. None of them have seen any serious side effects. They heavily premedicate and do a very slow drip. I understand that the first infusion is the most difficult. If it works the results can be tremendous.

I'm looking for advice from people who have had either of these drugs and what your experiences have been? I am terrified to have either treatment but I have to choose something at this point. Splenectomy is not something I want. They can't put it back in once they take it out. I would also like to know how the side effects have been with either and especially if there is recovery time needed after a Rixtuan infusion?

I've had a cruddy year and I know my broken ankle and surgery and my current recovery are not helping my ITP. There is too much going on in my body. I have a stressful couple of weeks coming up and would like to do my infusions on Friday as I think it would be easier to have down time. I thank you all in advance for any advice and information you can give me.

Carla

Hello Carla, you have a tough decision to make.

Rituxan is popular on this board and that's probably the opinion you'll hear. I never did try it as it is an immunosuppressant and I didn't want to be immunosuppressed any more, and my haematologist hadn't had much success with it either.

So I opted for Nplate and over the years, three years, I've been able to drop down to a tiny, tiny amount and only using it every other week. I don't know where you are in the world, but I suspect you are in America in which case you would have to go somewhere every week for the injection which would put me off completely. In the UK we self inject. I don't have the antiphospholipid antibodies but I still keep my count well below the normal with an aim for about 50.

There is also the oral drug Promacta (Revolade in the UK, although not available in England) with similar action which you might consider. I would just add that your count is not very low and at 20 I wouldn't treat, but that's another personal decision.

Carla:

I have a similar situation. I also have Anticardiolipin Antibodies and ITP (which has been in remission). The fear of clotting has also played a part in my decisions. I take an aspirin a day as a supposedly preventative measure.

I can tell you that I have totally ruled splenectomy out as a possible treatment. I will never consider it no matter what happens. There have been a few studies that show that being asplenic can raise the clotting risk in people with ITP. I've seen it happen here; people having strokes and DVT's after splenectomy. Adding APS to that can raise the risk.

I have also read studies that suggest that in people with APS, the body sometimes compensates by lowering platelets. I believe that is possible. In that case, I wouldn't necessarily strive for normal counts. People can clot with low counts.

Both Rituxan and N-Plate can work to get counts up, but N-Plate is known to carry that clotting risk. There have been studies that show that a lower dose of Rituxan can be just as effective as the normal dose, so you might want to look into that. It's also possible that only one or two treatments might be enough to work.

I didn't really have any down time after Rituxan. I had my treatments on Thursdays and was fine for work the following day. I was tired the day of due to the pre-meds, but okay after that.

Good luck with your decision.

Thanks Ann and Sandi for your responses. At 20 I have to treat. I am not at all comfortable with that number. If it were at 30 and would stay there, that I would consider. 20 carries too many what ifs and I have a family to take care of. I feel like I live in the hematologist office. My doc and I both are aiming for some kind of remission so I can achieve more normalcy in my life. It's like a really rough rollercoaster this past year. I am leaning toward the Rixtuan and appreciate your input on the subject.

Sandi, did you have side effects from the Rituxan?

Carla

I can't speak for retuxin because it hasn't been an option offered to me but I recently had to make a choice between nplate and promacta. Because of travel in my professional life, the weekly office visit for injections of nplate wasn't the best option, so I went with promacta. Going on 3 1/2 weeks and counts between 54 & 60,with only minor heartburn the first few days. Which had been my normal for many years. I even fit in a planned vacation for 10 days with my nephews and parents.

I also am also hypothyroid with high antibodies, so the promacta fits into the take on empty stomach and avoid calcium and minerals for 4 hours rountine I'm used to.

Carla:

I had a rare reaction to Rituxan - serum sickness. It is a delayed hypersensitivity reaction that usually begins about 21 days after the first treatment. Most people, if they are going to have a reaction, have it during the infusions and it can be controlled fairly easily.

From what I have seen here, most of the people who have serum sickness or delayed reactions like hives tend to be people who have Lupus or have symptoms of Lupus. Just an observation.

I'm one of those who had great results from Rituxan. My story: I was diagnosed in 2006. I was given prednisone that didn't do too much. I got IVIG that lasted 3 months. I tried Dexamethisone which did nothing but make me miserable. I was pretty scared to try Rituxan, but I was tired of my Dr wanting to put me in the hospital whenever my count went down below 6k. Finally went with Rituxan that put me into remission for 4.5 years. I had normal counts and forgot I even had ITP. Last summer I noticed bruises again and woke up with blood in my mouth. Back to the hema. We decided to do Rituxan again. My counts went up right away and have been in remission ever since. My hema is so happy that he is willing to make my next appointment next May. I am expecting my remission to last another 4 years, or more!

Hope you find something that works for you.

Thanks Bunnie! I'm glad that the Promacta ia working for you. How wonderful that you got to take a vacation. That one has been difficult for us this summer, although we did manage to get away for a few long weekends:).

Sandi thanks for the info on your serum sickness. I have done some reading on the subject. Today my counts were 92 after 5 days on 60 of the Pred. That at least makes me feel a little better. The nurses had to point out that it was the 3rd day in a row, minus the weekend that I had been there for a blood draw. I really do feel like I live there sometimes. I only got to speak to the doc over the phone for a minute as she was busy but she told me to drop to 20 on the Pred tomorrow. I will keep you posted to our conversation. I am pretty set on the Rixtuxan unless by some leap of faith my platelets hold on the Pred.

Ananta, thanks for your reply also. That is very encouraging news. I am very happy to hear you have had such great success with the Rituxan. I'm sure it makes life much more easy not having to worry about what happens next. It seems to me that people who have a remission with rituxan and then years later do it again, it continues to work. That would lead me to believe that it really just does work for some people. I guess that can be said for many of the ITP treatments though. What works for one may not work for another.

Carla