The saga goes on.
Posted , 5 users are following.
I posted on here last week that I had beensent to a Haematologist, as I have a high white blood cell count and also high platelets. They took blood and I am waiting for the results. I saw the Rheum. a few days after and told her that I had tapered down to 17.5mgs. of Pred after failing twice. She said my inflammation markers had never really "normalised", and it wasn't clear if I have GCA of not as I am a bit of a mystery, so after 12months on steroids this is where I am.
0 likes, 4 replies
EileenH catherine34621
Posted
FlipDover - an Australian on this forum - has also never had normal inflammation markers on steroids or methotrexate. Until the last few weeks - when she was started on tocilizumab/Actemra and the CRP has fallen to a normal level.
It might be worth mentioning to your rheumy. My personal suspicion is that there is another inflammatory arthritis that is almost identical to PMR - or a form of PMR that doesn't particularly like pred. But who knows...
FlipDover_Aust catherine34621
Posted
Hi Catherine,
Are you taking Methotrexate as well as pred? That will raise your white blood cell count etc.
If you are managing to taper, no matter how slowly, you are doing well, so take a pat on the back for that one!
As Eileen said, my CRP has never budged regardless of the dose of pred I was on, however, it still worked better than nothing! And whether it's a 'stubborn' case of PMR or some other condition with identical symptoms, who knows. I've given up trying to find out - I'll just continue to try whatever works for me.
In less than a month Actemra has made my CRP drop miraculously, to a normal range and I feel fabulous. We'll see how long it lasts and what the long term outcome is as time goes by.
catherine34621 FlipDover_Aust
Posted
Hi FlipDover, no, I am not on Methotrexate, just Pred.I just sometimes feel as if I am not being listened to, I was on 20mgs. of Pred. for 4 months and ttapered down twice before I felt I was o.k. I now have less fatigue, sleep longer, etc. but it seems to all come down to "the markers", when I went from 17.5mgs. down to 15mgs. I was breathless, shaking, less appetite, etc. I didn't know about withdrawal symptoms until my G.P. said that was what it could be as I was only on 17.5mgs. for 2 weeks before going down to 15mgs. The Rheum. I have now by a twist of fate, (a lovely person by the way) is the same one that when I went to first get diagnosed by in another Hospital examined me and didn.t think I had G.C.A., I took steroids given to me in A&E, and she took me off the steroids and put me back on the Naproxin I was on before, stressing of course that if I started with any eye problems to come straight back. I then got double vision and a shade across my left eye, also disturbances across my vision. My G.P.then got me straight in to see a Rheumatologist after getting me on Pred. he has now moved on to another Hospital, and the one who I saw originally has now become a Consultant at the one I attend. I don't want to give the impression that I havent any trust in this one as I was pleased to know I had a good one. I don't mean the Consultant doesn't listen I just mean Drs. in general. Sorry for going on and thanks for replying
FlipDover_Aust catherine34621
Posted
Sounds to me you need to get a definitive diagnosis on the GCA because you really don't want to be mucking about with that. Your pred dose will also be determined by whether or not you have GCA.
I would also suggest you look at reducing using the DSNS method (dead slow, nearly stop) which is posted on the PMR page here, as opposed to dropping 2.5mg at a time - that could (and has) really knock you about.