I have been on and off prednisone for the last 8 years. It is taking more and more prednisone to hold my count to 20,000. I am lucky, I have never had a bleed. (although, there was a bleed blood behind my retina eye..sometimes the doctor says that is not from itp..then they say it could be. Coming off the prednisone, I really have withdrawal..with aching and exhaustion. (I also have an undefined tissue disease.) The doctor is suggestion rituxan, but I am not sure that I want to try this drug. I sometimes wonder if I should treat at all. I have dropped to a count of 8,000 at one time. I am a very active person. Does anyone have any comments, experience with rituxan, and also not treating at all. All information will be appreciated.
ITP treatment...rituxan: I have been on... - ITP Support Assoc...
ITP treatment...rituxan
Dear Pzena,
I had the standard series of four Rituxan infusions in 2013. (I had been on Prednisone for my ITP before, but the side effects were so terrible that my doctor and I agreed that we needed to try something else.) The medication left me fatigued, but my platelet count has stayed above 180k for three years so far. What worries you about this particular medication? My understanding is that most people tolerate it well.
Ruth
Hi
R u alright with ur platelet count after rituxan infusions without continuation of medications.
Yes. My count has stayed up these three years without any more infusions. My doctor says eventually I'll have to have more; apparently five years is the longest anyone has gone without requiring a new round of infusions. But it's been three years since I've needed treatment. I am aware that some people only get about six months between infusions though. Everyone is different. But I think it's worth trying the Rituxan.
thank you for your response. I know all medications have side effects, and they are different for every person. So I am very cautious. Here are comments from one of the post "I don't suggest Rituxan, I was on it for a while and developed blood clots in my legs, lungs and liver, had to be put on blood thinners,,,I realize each case is different but I would not recommend Rituxan...'
I am undergoing Rituxan treatment presently. I have had 3 treatments and I get my last on this coming Monday. I had some wild and scary side effects after my first treatment. Vision blur and loss of clarity in my mind. I was told I had a sinus infection and after second treatment I have been fine. I cannot say the Rituxan is working because the doctor told me it will take another month to make that determination. I am a diabetic and so for steroids instead of taking Prednisone constantly, my doctor chose to put me on Decadron 40mg per day for 4 consecutive days only in months that I needed it. Even so, the decadron is so strong that steroid and side effects remain in my system the entire month. The Rituxan manual is scary to read and I admit I had anxiety because of it, but now I see no real effects to worry about and the promise of a long remission.
I have read your post and am horrified to learn you have been on the dreaded steroids for 8 years. However, if you are not a bleeder, will your consultant see what happens over a longer period if you come off all drugs.
I am 71, had ITP for 20+ years and for the last 11, have taken no meds with a consistent count of 10 (10,000) and I still have my spleen. I refused to have this taken out.
As to other drugs, they all work for some and not for others. You must however work with your consultant or even consider a second opinion. If you are in the UK, there are now a number of specialist ITP centres around the UK. Details on the ITP supports web site under forum.
thank you for your reply. I have wanted not to treat, but I have dropped to 10,000 also, and all the doctors say that you are at risk for blooding internally, like into your brain. I did have a blood bleed behind my retina. Can't get a straight answer whether that was because of the ItP. I also, am 71, and am trying to decided whether to take the rituxan or not treat at all.
Hi Pzena. Thanks for your reply. I think we all understand your dilemma but you must work with your doctor/specialist what ever you decide.
I do not know where you live, but if you look on the ITP support web site, there is a report on it, prepared by the best ITP specialists in the world. It may be an idea to print this out and give it to your specialist to read. I also know you will find it very informative and I hope helpful.
As to bleeding, that is always a risk what ever your count and no one can be certain what is going to happen. I think it upto each individual to make up his/her own mind after taking advice. Quality of life is important and if it can be improved by not being on meds than so be it. Also as has been stated, your body becomes immune to the drug after a while so why not do without, providing you do not bleed, and let your body adjust and keep the meds in reserve for when you really need them.
Finally, do not be pushed into making a rash decision, take your time if your body will allow it and make up YOUR mind what is worth trying that could be best for you.
I am really having a hard time deciding what to do, because I wanted to not treat, because I have never had a nose bleed, but when I went to the doctor to get tested to remove a cartaract, they discovered I had a blood spot behind my retina. First, my doctor said it was not from the itp, then several visits later he said that it could have been from my itp. I have now googled it and see where it can come from itp. Pretty scary because I had no idea I was bleed internally. I also have a undefined connective tissue disorder. So when I start coming off the prednisone, I start getting a lot of pain, from the withdrawal and other conditions. I am not someone who sits around, in fact I still play pickleball ( I am 71) but lately everything is taking a major effort. It is also starting to "get me down:...spending to much time in research....and it is all over the board. My next thought is to try the Rituxan, as it should help the itp, and the connective tissue disorder. But, then I know everything can have side effects for different people. One person said he had blood clogs, in his lungs, legs, and liver.
Like Sailor I have had ITP for 20 years plus. I turned 50 this year. My count has steadily dropped over that time from 60-80k to 20-40k. I have no meds. I live in Belgium where they do not treat you if you are asymptomatic until your count is 10k or less, or you are bruised all over or bleeding all over A&E.
I have also been told the same by the haemotologists at Derriford in Plymouth, an ITP centre of excellence....as I cope without meds,save them til I need them.
I have my spleen, and have had steroids on 3 short separate occasions in that time. Once for a G.A., once when I had a virus, and they didn't work, and once when the doc didn't like my count level and had a panic, but they didn't work then either.
Hi scaryteacher you have spleen removal, why? You have take three time steroids it work. Rise your plat lets
I didn't say that....read more closely. I said I HAVE my spleen, ergo, it hasn't been removed.
The steroids worked once 20 years ago when I had a GA. The next two times, they didn't work, and my count didn't increase.
After delivery your count raised autometic. India 1:30am wednesday
No, it doesn't with prednisolone. I had some for 10 days, had more bloods, and it made no difference at all.
How much count need for teeth withdrawal madam.
When I had my wisdom teeth out under GA, it had to be over 150k. When I had a lump removed from my neck/shoulder under GA it was about 50k.
Not your place tell me madam any itp patients teeth withdrawal how
much count need. Your lups removed this time your count just 50u
As it was 16 years between the two things being done, the advice on platelet levels for a GA had changed.
What do you mean, 'not my place'?
Sorry madam I am write wrong. Not for you, I tell you every itp patients
Hi scaryteacher 2nd and 3rd time take steroid but not work then what are you doing
Nothing, except a blood test every six months.
My sister surface itp her count 3. She not bleed but some red dot
Hi,
I have TTP first diagnosed in 2014. In February it came back worse than before and I was in the hospital for 5 weeks. My numbers started at 63k and went up to 190k and then went back down in a matter of days. At that time i could not get to the 150k min until I took rotuxin. I had 4 doses of it with little side effects. My nurse gave me tylenol, benadryl and something for nausea 30 min before the rotuxin. Everyone's reaction is different. I would weight your other options but my experience wasn't bad at all. I would get drowsy but kept myself comfortable and just slept for the first 2 hours. Then the benadryl wore off and I was up watching TV talking to my family.
Good Luck!!
Hope this helped
Ask if you can have n.plate. ive had every treatment and its the only one that works. Its amazing. Good luck
I don't suggest Rituxan, I was on it for a while and developed blood clots in my legs, lungs and liver, had to be put on blood thinners,,,I realize each case is different but I would not recommend Rituxan...
wow. that's why I am so scared to try anything. I always hear about mad side effects. I think I need to do something, because it is taking more prednisone to even keep me at 15 or 20,000. What else have you tried?
I have been on Prednisone for approx, 3 years finally tappering off, am at 2mg now and then 1mg then I celebrate, hope to never have to go back on. I have like I said been on Revolade, not a good experience when I had to be taken off due to the blood clots I was put on Rituxamab, so presently I am over 6 months with my count at over 300...I am really hoping it stays that way, its been quite the ride oh and I forgot I have had my spleen removed...I wish you all the very best in your journey.....
My daughter is 15, she's had itp since she was 5 months old! Her platelet count at first was (9 times out of 10) below 5,000 if she was at 10,000 I was overjoyed. They kept her on prednisone for at least a year. I really wish I was wiser then, but they should never had kept her on that, after two to three weeks and no results from it they should have stopped it. She also had several ivig treatments with no results. Several bone marrow tests to rule out any other cause other than itp. She's not had a treatment or any meds since she was 5 years old. Keep in mind the meds or treatments didn't bring her count up. Her platelet count now stays between 40 to 84,000. My opinion, if you're taking meds and your count is 20,000 I would stop taking them and not get back on them. You could try another treatment like the rituxan, but if it doesn't work then I wouldn't do treatment if you're not having any bleeding problems, just keep check on your platelets regularly
Thank you for your information. Unfortunately, my platelet count has been below 20,000. I have never had a nose bleed or terrible bleeding from my gums. However, this year they discovered a blood bleed behind my retina. I can't get a straight answer if that is from the ITP or they said possible blood pressure. (which has been running a little high, probably due to the prednisone. ) I really want to try to come off the prednisone and not treat at all. If anyone has any input, I would love feed back
I failed to respond to prednisone and because I had no major issues in three years I was allowed to go 'drug free' my lowest recorded count was 7 (70,000) my normal was 10 to 15. Sometimes I got very tired, and sometimes I got tested because of bad bruising, etc, but I was fine.
Now I have Lupus as well and have to take medication or I don't function and would be in terrible pain. You have to weigh up your need etc. On the Lupus meds (hydroxchloroquine & mycophenalte) my count is normally closer to 30 and doesn't wash out of my clothes as well as it did at 10 !!! 
I just finished my last treatment 2 weeks ago, only side effect I had was chills after my first dose, All the other were fine, my platelets went from 6 to over 100, definitely worth trying
Similar is the case with my wife (age 54). In 2016 she got diagnosed for ITP. Tried Homeopathy, Naturopathy - nothing worked. Finally she was put on Predisone 60 mg and Danazol 200 mg TDS with Calcium. Prednisone then tapered off after her platelets got to 80 K and stayed constant for 3 months, she was asked to stop medication. Here the Doc went wrong. Danazol should have been continued. Symptoms reoccurred in Jan 2019. She had to repeat. This time, she has been asked to continue with Danazol. Her platelet count hovers around 90. As far as Side Effect go, she had hair loss, weight gain, moon face when on Prednisone. Now she is back to almost normal. One has to be very careful with other medications. Check and cross check if they would effect platelets.
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