Frustrated and fealing defeated

I was diagnosed with ITP in 2008 by a routine blood test. I had no symptoms at all but hadnt been feeling well. My platelet count came back at 30K. They started me on IVIG, which I did not have the greatest response to and ended up in the hospital with a fever of 103 that I couldnt break. The next step was a bone marrow biopsy which was normal. I was started on Pred which I had a good response to. I stayed on that about 6 mos trying to taper off, but everytime I would taper my platelets would crash to almost zero. Alternate treatments were discussed and I decided to try Rituxin because I also have MS and I liked that this would treat both of them. The treatment went fairly well, I had a small reaction about an hour in with hives and itchy throat. They stopped treatment for an hour, resumed and the remaining treatment and subsequent treatments went well. This put me in remission for almost 2 years. When my ITP came back in 2010, it came on very severe, blood blisters in mouth and bruising everywhere almost overnight. I again went with Rituxin, and was given another almost 2 years of remission. This brings me to where I am now. My ITP is back again, and unfortunately, when I went to my old friend Rituxin this time, my reaction was more severe. Almost immedietetely, I started having an itchy throat and I felt I couldnt breathe. It took several rounds of IV steroids to make it stop. So, Rituxin is no longer an option for me. So, my MD is telling me now that my options are one of the new nplate type drugs, or to take out my spleen. I'm meeting with my surgeon this coming Tuesday but I'm really scared and dont want to rush into something I will regret. I'm currently on pred to keep my counts up, I have had mixed results with it in the past. Any advise would be appreciated! Thanks, Sandy

I had a reaction to my second infusion in my second round of Rituxan. I can't ever have Ritxuan again. I talked to Dr. Howard Liebman about this at conference and he recommended if I need treatment again to use Imuran. He said response to Rituxan predicts response to Imuran, and that I should only need Imuran for up to six months and then I should have a sustained remission.

Did you get enough Rituxan into yourself to maybe get a remission? I only had two infusions but it's been 3 years of remission so far.
Erica

I once had only one infusion and ended up with 7 years of remission. Sometimes subsequent infusions are pretty durable and you don't need the whole four if you are responsive.

I was also going to suggest Imuran (or CellCept).

Thank you for your response. My reaction happened so sudden into treatment, I was only about 45 mins. in. I think my nurse told me I got about the equivelant of 2 tablespoons into my system. So, unfortunately, I don't think that is going to have much effect.

I did look into the Imuran a little, and it looks like some pretty scary stuff. Not sure I want to risk that one.

Not much worse than Rituxan if you read all of the possible side effects.

It's funny how we get our own ideas about which drugs we are more wary of. Rituxan was always the one I was scared of the most. I tried Imuran and CellCept but never did try Rituxan. Probably totally irrational but there you go.

Sandy (1972), how much prednisone are you currently taking, and what is your current platelet count?

I have been on Cell Cept and Imuran aka Azathioprine for my other auto immune conditions and i was on Imuran for like 4 years and only side effect i had was it gave me stronger urine. Been on Cell Cept for like 4-5 years now not had any major side effects there.

All drugs side effects are scary but you have to look at how likely they are to happen. Things like headaches and minor things like that happen alot more than any scary stuff. But you always have to remember these drugs have been tested on lots of people and have been used for years on lots of people including Transplant patients so you can be pretty sure that they are as safe as they can be made. But if you are unsure about a drug speak with your doctor as they can usually explain why they would use it and why its advantages will out way the theoretical bad.

Thank you everyone for your comments and advice....I appreciate any input. I wanted to update everyone on how things have been going for me and answer your questions. My platelets were at 28K after being on 60 mg. of Pred prior to my Rituxin infusion. They had to stop treatment about 30 minutes in so they said that I had only got about 2 tablespoons of it into my system. However, 3 days later, my platelets shot up to 120K, 1 week later they were at 124K. They decided to start tapering me off the prednisone to see what would happen. I have been tapering down by 10mg. per week and I am currently at 40mg. of prednisone. I have been having my labs checked every Monday and they held last week at 124K, and then yesterday they were at 99K after tapering down to 40mg. this past week. So, I am wondering if this was a result of the rituxin or a delayed response to the prednisone......

Only time will tell. Good news for now!

It is a waiting game.

Don't let itp get the best of you I've been diagnosed for eight years now I'm 26 tried everything in the book only thing working for me right now is ivig and it never worked before I had a stroke from nplate steroids don't work I'm allergic to rituxin they already removed my spleen it's annoying and frustrating just always remember it could be worse that's one thing that always keeps me goin is sitting next to those chemo patients while I'm getting my ivig I always know it could be worse good luck to you

Well said Kelirae!!!!!

Just got a call from my surgeon. He had a cancellation on 7/6. I am booked for my spleen removal. I am still waiting for my MD to get more information on having an indium screening done. She said there are 3 places here in the US that do this now. I would really like to have it done prior to surgery.

Yes, very well said Kelirae, I often think the same.

If you find out where those 3 places are, let us know. As far as I knew, they only did the Indium in the UK.

I'm a young woman with ITP, it was diagnosed back in the 1991 and ever since my platelet rates have been very low (from scale of 1 to 25, mostly around 10). When I was younger my dad told me they tried medication but nothing really worked, I had a splenectomy back in 2009, but it didn't help at all. For some reason my body doesn't "cut" the platelets at all and destroys them, some of my platelets are quite huge compared to what normal people have and count as single rates, but work a bit better.

My whole life has been living with bruises and being careful and I've gotten used to it. There's really nothing that I would like to do that I can't (except I couldn't become a cook because of my illness and I'm hesitating of getting a tattoo) because of my ITP.

The best treatment for the illness is, most honestly, just time and getting used to it. Fortunately for some it's only something that'll eventually pass with time, but for some of us it'll always stay. I've always felt comfortable explaining to people about ITP when they ask me why am I so bruised.

miiamehx- was the reason you couldnt you be a cook??? is it becasue of cuts??? I was a kitchen hand for a couple of years and i did nearly slice my finger off, but it didnt bleed for very long. When i did it though the head chef asked why i was shaking.. i said becasue i just nearly sliced my finger off! I might bleed all day! he took away the tissues and said "the bleeding's stopped" I was speechless!

melasund wrote: miiamehx- was the reason you couldnt you be a cook??? is it becasue of cuts??? I was a kitchen hand for a couple of years and i did nearly slice my finger off, but it didnt bleed for very long. When i did it though the head chef asked why i was shaking.. i said becasue i just nearly sliced my finger off! I might bleed all day! he took away the tissues and said "the bleeding's stopped" I was speechless!

Yes it's because of the cuts. I keep bleeding for a long time if the cut is deep

I had my splenectomy on 7/6. The surgery went well, luckily my platelets were at 80K when I went in so I had no bleeding problems during surgery. My platelets have been skyrocketing since, at last check on Monday they were 750K. Pretty unbelievable. So, now its a waiting game, to see how they are going to level off and just hope it worked. Its such a hard decision, to let them take something so important to your immune system. I still struggle wondering if I made the wrong choice. I guess only time will tell. I did hear back from my MD regarding the Indium screening test. She said that they do not perform them here (meaning my hospital) because it is unreliable. But I do know that she had mentioned that one of the states they perform it in was Washington...sorry, thats all I have on that. I will keep everyone posted. Thanks everyone for the support.