Anyone had side affects with having r... - ITP Support Assoc...
Anyone had side affects with having romplostin injections? Had my first injection yesterday. Still taking steroid's as well for now.
I had my first one just over two weeks ago, I am also on 60mg of prednisone. besides even more fatigue I have had joint pain, knees, hips, elbows that lasted about 9 hours a few days after the treatment, also the last 3 days I have had horrible café cramps. I don't know if it is because of the pred, the rituximab or a combo their off. best of luck.
Hi I've had a few side effects with romoplostim joint pain foot cramps also my hair is thinner I've always had thick hair my hairdresser has commented on the difference since injecting but hey at least it's working for now sincerely hope you do ok with injections
Like Salamgal I too had thinning of the hair. I have very fine hair anyway and it was noticeable that you could see my scalp. The romiplostim did not work for me and when I stopped taking it my hair grew back as normal. I was told I would not lose ALL my hair, but I did lose a lot. NickyD
I was on romiplostin for about 9 months. Never had any side effects. I came off it because we wanted anothet baby so on ivig. But will probably go back on it long term after baby. Ivig is so much more hassle. But will be worth it in 6 months when baby comes. I self injected romiplostin at home which was easier. Good luck
Can you tell me where you live. I have been asking for me to self inject, and the hospital have said that is not an option. Iv been on it a year and a half now. Is your in jection in an epi pen ? Or do you draw it out off the vile yourself. Thanks i would be very grateful for your answer. I really want to be able to inject myself x
More fatigue and aching joints and muscles especially the day of my weekly injection. Nplate is the only thing that works for me. My haematologist keeps mucking around with the dosage and/or duration of the injections which I believe is not helping me. I think changing the dosage of duration brings about a crash in my levels (I notice I am bruising once again) and an increase in these unwanted side effects.
To be honest I have got quite low in myself recently because of the fatigue and aching - pretty fed up with having ITP - I expect I am not alone.
My personal experience of having ITP is that the treatments are as bad as the condition itself - not sure which is the lesser of two evils. At least with Nplate I am not going to have a serious bleed.
I haven't had any side effects with romiplostim. It has been brilliant for me. Self injecting once a week and then forgetting about it beats daily tablets any day.
Crissy22a. Can you tell me how long you have been injecting yourself and where you live. My hospital, which is in wales have sais that they dont allow it. Somi have to travel every Wednesday for my injection . Im going to Thailand in june and have to work my trip around my injection. If I could inject myself that would be amazing .
Oh I Hope I don't as well? Time will tell. I have no idea how long I will be on it for as Azapthoprine stopped working. Thank you all for your comments and support we need each other.
The only side affect I had from Romiplostim was a constant mild headache. I have now been off it for about 4 months and the headache disappeared about 6 weeks after the last dose which I understand is the timeframe that it stays in your system.
Iv been lucky . No side effects. Its the only drug that has worked for me. Been on it over a year now, and I thank god for it... steroids didnt work for me at all , just made me feel terrible. Get off them if you can. All the best x
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