Unsure what to do next

My ITP journey started about a year ago,platelets at two thousand and admitted to hospital with bleeding that would not stop. I had blood transfusions, iron infusions, platelet transfusions two lots of IVIG and five days later left hospital on 75m of prednisone. This is when the nightmare began, about five weeks later high blood calcium, parathyroid tumour found and removed in May ( thyroid also removed has it was very enlarged).
I was tested for h-polryi and this was positive, received treatment for this but about three weeks later platelets dropped to fourty thousand. Still on prednisone and still bleeding from fibroids.Platelet counts at this stage are anywhere between 90 and 140 ( pretty good I thought).I stopped steroids in November and had uterine artery embolisation for the fibroids in December. Platelet count two weeks after surgery was 278k but since then I have been dropping by about 40k a month, still a good count at 170k.
It has been a bit of a tough year and I have made a few changes to my life cut down on responsibilty at work and also reduced hours (mainly because of prednisone side effects), but I was wondering if anyone still had really bad pain in the joints two months after stopping steroids, this pain is stopping me from sleeping and sometimes I cannot stand without help.
I would also like to say I have learnt so much from reading on the board and what was really scary 12 months ago I now think of ITP as ok so I keep an eye on this and treat when I need to, not so scary.

Hi Millie Welcome to the boards. It seems that fibroids are a common thing with some of us "older" women as a way that ITP is discovered. Sorry if I'm assuming that you're "older" Anyway....I don't know about the joint pain after so long of being off steriods. I know that prednisone is a monster in itself! It was for me anyway. I'm sure someone here will be able to help you more with that. There are many other treatments, but as of now it doesn't look like you need anything. It's just that hurry up and wait to see what happens next time. Glad you found us and I look forward to hearing more.

Hi Milly,
I was on steroids for about two years, and I had muscle pain, not joint pain, pretty bad for almost four months after I got off the steroids. Eventually it was totally gone and sometimes when I am about to stand up I still flinch for a second thinking it might be difficult and painful but it's just the memory.
Erica

I was on prednisone for 6 months, and had joint pain for the last 2 months of the taper + 3 months past the end of the taper. The weirdest was my fingers...if I drove somewhere, when I tried to let go of the steering wheel and straighten my fingers, it would hurt! Knees, hips, and I'd never been aware of the joints between my feet and my toes before then. It DOES get better, but it took a solid 3 months for me to feel normal again.

Thanks everyone for the reply, I am hoping it is only from the steroids. Seen my doctor about it and he has given me Tramadol for the pain short term, if no better in about a month he will send me to Rhumotolagist. The tramadol helps with the pain but not really a solution long term, the offer of steroids again was put to me but I was not a nice person on them :evil: I have to have an ECG today as steroid have left me with a heart murmer.I have had all the test for lupus ect but all in normal range.
Anyway life is still good and staying pretty positive that things will be ok (mostly positive, gets me down sometimes)
Thanks again for taking the time to help me out, and yes I am in the older age Server the big 50 coming soon:laugh:

thats just because of prednisone,its really had a lot of side effects,i also suffer like yours too,and honestls not its not good

Milly.

The muscle aches and pains seem to be a common side effect that many get from Prednisone. Please go to the Natural Treatment section of this forum, and see the thread I just posted, called "How to Attenuate Side Effects of Medications"
It's simple to do, and I've had good success using it to get rid of side effects from a number of different medications or from overdose of drugs. I know it might seem a little strange, but it really works quite well.

Good luck!
April

Thanks April at this stage i will give this a try, the pain is unbearable, unsure what it can be.I seem to be ok if I am moving but as soon as I sit or lay down that is when it starts tonight I am having trouble walking. I am really hoping that just from steroids but I have been off them since November and all other side effects are gone.
I had the ECG done very small murmer, nothing really to worry about but I am so bruised from the ultrasound ( bit worried about that).
I was also wondering what is the next treatment that anyone would try for the ITP. I would really like to avoid steroids if I could,they had such a huge impact on my life and had I had known that there was other options I would have talked to my doctor, I was really in a bad place when I was taking them. I have learnt never say never though cause never is a really long time and I know that there may come a time when I need to take steroids again.

Milly, those of us in MY age category consider 50 to be almost young! You probably didn't have arthritis before your diagnosis? I did though it wasn't terrible then. For me, prednisone tapers mean joint pain because the prednisone is such a powerful anti-inflammatory that while I'm on it, I have very little joint pain--and then when I reduce the pred, the joint pain returns.