Dx GCA March/19 Started on 50mg prednisone, currently on 27.5, MTX added 2 wks ago. Not going really well....
Finally had my Deka scan done last wk, it was ordered directly after dx to try to get a base line, but 6 month wait here in B.C. Canada. So femoral neck -2.4 total hip -1.9 lower spine -1.8 had a AA infusion in April/19 taking 1200 mg calcium, 2000vitD K2 daily. Omega 3s etc Is there anything else to help prevent further bone loss. I am 67, never had ANY health issues before this **** GCA surfaced. Just a yr ago was playing golf every day
I have had no known side effects from the MTX (so far) or the AA The pred, (or the GCA) is making my head terribly noisy, tight, and just plain WEIRD. My rheumy is good, but so hard to describe how my head feels to someone that has not been thru it.
Thanks for all/any advice.
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Do you know what infusion it was? Don't think AA comes in that form. Is it an annual or every 6 months infusion?
It was a good start and I'm sure Heron will provide the next lot of info. How much can you manage in terms of walking and so on?
Nearly forgot to ask: is the head thing new or has it been going on all the time? Pred never caused brain fog for me, PMR did - and so did methotrexate. That and the fatigue was the worst about it.
It’s difficult trying to describe one’s symptoms in a way that someone else will know what you mean exactly. I had tinnitus (general rather than distinctly on my right before diagnosis), sensitivity to noise, feeling odd, foggy and not quite the ticket generally. Got better as dose went down but I think that it wasn’t until the teens that I thought I was appreciably better.
You do know, don't you, that it is not recommended any more that people take a bone medication for "osteopenia"? I realize that the high dose of pred needed for GCA is more of an issue than the usual PMR dose. Nevertheless, as the greatest effect on the bones from pred occurs in the first few months, which you have already weathered, I think you are well positioned to consider discontinuing the bone med, whatever it is, sooner than you might have been led to believe.
yes, thanks, I have read everything you have posted on bone health. It is very informative. I am not planning any other medication, just hoping for more natural ways to improve bone mass going forward. I accepted the infusion the first wk after dx, as rheumy and gp thought it would be preventative. Could not get a dexa scan for 6 months, so kind of flying blind at that point. Thanks again for all the information you post.
Hi I'm new to the site but have become very interested in your post explaining your symptoms and that you had a Zolandronic infusion. I too had one in March 2019 after questioning 3 different doctors about the appropriateness of it given that I have Chronic Lymphocytic Leukemia as well as PMR . All agreed it wouldn't be a problem. After a few hours I had a horrendous reaction which after 2 days caused my left eye and side of face to swell and was so painful that I sat up most of the night for weeks. This later became diagnosed as Scleritis which they finally agreed was a rare but well documented side affect.
I too suffered that odd feeling in my head for many months afterwards . I am pleased to say this has become more bearable in recent months. Now is that because the affects of the Zolondronic drug is leaving my body or is it because I am now down to 2 mgs or Prednisolone ? Good question but no idea of the answer.
I do hope your funny head will improve with time and reduction of steroid.
Good luck
My mom was put on predasone (spelled wrong) she had horrible pains in her legs - I mean she was screaming out loud from pain - the doctor said it cant be the pred but the pain started the night she started on the drug so you do not need to be a rocket scientist to see that it was the drug
the doc also said you cant stop it immediately you must go off slowly she stopped the next day she could not take it and she was a woman who could take pain but not that pill no way . she said NEVER take predesone
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