Diagnosed GCA Jan 2018. I am now struggling on 5mg Pred. Rheumatologist is adamant that I must reduce further and ditch the steroids a.s.a.p.I have been informed
I now have osteoporosis in my hip and referred to have total hip replacement despite never having had joint problems before. Could this be why I am under pressure to reduce so fast? I have read that Predisolone could be responsible?
I wasn't aware that there was a direct link apart from our age group . I know it is linked to osteoporosis but not Osteoarthritis. Having said that I am having more pain in those areas ( knees, back, neck) now I’m at a low dose. How fast is fast? I have had PMR for three years and I also feel under pressure to reduce below 5.5. My body is simply not ready.
It sounds like necrosis caused by the steroid. see
mayoclinic.org/diseases-con...
"Risk factors for developing avascular necrosis include: Trauma. Injuries, such as hip dislocation or fracture, can damage nearby blood vessels and reduce blood flow to bones.
Steroid use. Use of high-dose corticosteroids, such as prednisone, is a common cause of avascular necrosis. The reason is unknown, but one hypothesis is that corticosteroids can increase lipid levels in your blood, reducing blood flow."
Hello, a few questions spring to mind. Did they do a baseline bone density scan when you started Pred like they should have done? It’s quite possible the osteoporosis was well under way before Pred. I’d be surprised if this amount osteoporosis has occurred in a year. When I started on 60/40mg I was told that it would take about 3 months for any real effect on the bone to be visible. Are they assuming the GCA has burned out in a year (unlikely) so you don’t need Pred? If not, what is supposed to preventing inflammation? If you’re on such a low dose now, why is the risk still assumed to be so high?
If you really mean osteoarthritis? That affects joints more than porosis which is more the body of the bone. People have had hips done on higher than 5mg. Sounds like you need a second opinion or press this one harder with some backup.
Do you mean osteoporosis or do you mean osteoarthritis?
Maybe, maybe not. And you can't prove it one way or the other. Unless you had investigations before you can't know how close to having hip problems you were. In some people it appears suddenly whether they were on pred or not. And a hip replacement is not a usual approach to osteoporosis.
As for the getting off pred - that is going to depend on your adrenal function and I would be demanding a referral to an endocrinologist if I had to reduce faster than 1mg per month which is still pretty speedy at this level.
I have GCA and I reduced from 40 to 3 in 23 months uneventfully then I flared several times It has taken me 5 years to taper to 6mgms
You need to be so careful with such a fast reduction. PMRPRO has given you good advice
Take care
"ditch the steroids a.s.a.p".
I would be seriously considering looking for another Rheumatologist. Pred stands between keeping your sight or partial or total loss.
5 years before I went into remission.
Many people, including children are on pred for life...............does this mean that they never have operations?
PMRro has given good advice follow it please.
Like me you're between a rock and a hard place! You seem to be on a very fast reduction of pred, has anyone suggested a steroid sparer? After 2 failed goes with these I have found azathioprine works for me and allowed a reduction from 14 to 10 in about 4 months.
I can't find the reference but I have read that pred inhibits new bone formation.
My osteoporosis is considered to be the side effect of pred. I didn't have a baseline dexa so who knows?. I did lead a very active life before and there is no history of osteoporosis in my family.
Are you still getting symptoms?
The development of low bone density is not inevitable with pred - mine barely changed at all in over 7 years. It doesn't "inhibit" bone formation as such, it tends to make patients lose more calcium via the kidneys so less becomes available for bone building. Taking more calcium can avoid that happening.
I have taken my adcal d every day from the beginning, so maybe I have an absorption problem, I have been referred to the fracture clinic and the osteoporosis nurse practitioner so maybe they can find an explanation.
This is because during a bad bout of bronchitis I went to A and E looking for pain relief and they found multiple fractures of thoracic and lumber vertebrae! They recommended bracing and physiotherapy, the appointment is 2 months away.
I think I must be unlucky to have a rarely bad complication of pred, but it has been devastating. As with all aspects of GCA PMR an explanation would be helpful to my peace of mind, but I do realize this is not very likely.
What other medication are you on? And had you had your vit D checked? It must be right too or the calcium can do nothing. Had you had a dexascan right at the start?
No and no. The dexa shambles is typical of thecurrent NHS. I asked for a dexa the beginning of last year before the first fractures and rheumatologist said yes, and i waited and waited... Finally I rang her secretary who let out that the company that did dexa for that hospital didn't have a contract with my GPs commissioning group. It hadn't occurred to anyone to tell me! My GP managed to book one within a week at one of their hospitals, not contracted out. By then I had fractured the first 2 vertebrae after a particularly enjoyable fast ride with my son, as it turns out my last ride.
I am not a fan of this lots health service reorganisation for some reason!
I shall ask for a vit D test, who knows I might get one.
Haha - OH and I have been working in or married to the NHS for the last 40 years or so. When the first "reorganisations" were mooted we and most of our colleagues said it wouldn't end well...
But actually, it does sound as if this was already well on the way before pred - which is the primary reason that any of us should be dexa'd immediately. It - and a few other things - should be part of a protocol. And a few other things should be at the very end of a flow chart - only for introduction once a, b and c have been done.
I suppose I have to accept that it is lack of resources that led to this situation. However it seems to have been a false economy as I am now going to be a constant drain on the NHS for fractures etc.
Since the plan for quick biopsy didn't work, would a scheme of preliminary tests ever work? I hope it is worth a try because I would not like anyone else to end up where I am.
Oh yes - a lot of the current problems stem from limiting preventative care. The quick biopsy thing is also supposed to be being worked on - rolling out fast track centres. But they don't help until the GPs have been properly educated to recognise the signs of GCA and know when to ask for help rather than dismiss the patient.
My GP did recognise it, it was the hospital rheumatology dept that couldn't get its act together. I did experience the fast track diagnosis at Oxford last October after nearly 3 years, it was excellent, pity I couldn't have gone there to start with! By then they were just picking up the pieces.
that hip problem could have NOTHING at all to do with the prednisone. I had a hip replacement BEFORE I was on steroids and having been on them 18 months or so have had NO problems with my joints. the right hip which was iffy back when the other was done had not gotten worse. The pain of a bone on bone hip comes on quite quickly.. one day it is just there. I think exercise as much as you can and take the calcium and k2 M7 is the best thing to do. good luck!!
Any advice please?
D-Day tomorrow- wish me luck!
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