IF you have been prescribed prednisolone for... - Vasculitis UK
IF you have been prescribed prednisolone for any length of time have you since been told you have Osteoporosis?leave any appropriate replies
I have been on between 60mg and 30mg of Pred for 2 years can't take biphosphates due to jaw necrosis and can't have a repeat bone scan on nhs for 2 years. Probably will have terrible oestoporosis by the time I have a repeat scan.
I started prednisolone in 1994 & took them for about 12 years (I have GPA) I have been diagnosed with osteoporosis of the spine. I have over the years, cracked 2 ribs just going about by profession as an industrial plumber. (Straining with heavy pipework) I have also broken both my left & right shoulders through tripping & landing on my side. I do suffer with my back a great deal but thankfully I am still employed full time at the age of 66.
I have been on steroids for last 7 years and had a bone density scan done 2 years ago after a battle to get it done. I was fine then no issues. They then took me off all the bone supplements I was taking. I had it repeated on Monday last and it showed a huge drop in density and I now have osteoporosis and I also have lost half an inch in height in that 2 years. I'm so annoyed that I didn't fight to stay on the bone supplements after the last one. I had a good relationship with my rheumatologist but now I feel let down. I have an appointment with her on the 17th. Sorry for the rant but just fed up 
Been on steroids since 2011 in controlling Wengeners Vasculitis Not advised specifically that I suffer from this however have also been prescribed Alendronic Acid tablets alongside the Prednisolone as a preventative measure.
Also have a yearly bone density scan which to date has only revealed normal degeneration consistent with age (62)
Had left hip replacement due to Avascular necrosis
I have been on Prednisone since 2012. I have severe osteoporosis. I had some osteoporosis before but it is terrible now. Two broke femurs. Vitamin D or any bone supplement causes excruciating pain. I also had poly cystic kidney disease for years. After taking prednisone it moved into my liver very quickly.
bone scan next week, again
My husband has been on steroids since May 2011 from 70mg, now down to 5mg per day. He now has Avasular Necrosis and is awaiting left hip replacement, to be closely followed by right hip and now we think his left shoulder has gone too. Back is presenting problems but can only fix one thing at a time. I tell him I will have a Bionic husband at the end of it. He has had Alendronic Acid throughout this time so M33ary, don't feel too aggrieved at not having taken them.
I started on 60mg Prednisolone in Sept 2014 due to Cerebral (CNSV) Vasculitis and I have now tapered down to just 3mg a day. However I have suffered with my mobility for the last 2 years and 4 months ago I was diagnosed with severe Osteoarthritis in both hips. According to the consultant - partly due to the long term steroid use. 4 weeks ago, I had a bi-lateral hip replacement.
I didn't have a bone density scan until I'd been on steroids for about a decade. I think it just never occurred to my consultant, who I was otherwise very happy with. It was only when another consultant temporarily saw me that it was suggested. I was diagnosed with osteopenia, so early osteoporosis. However due to NHS protocols and the type of damage I have, in particular combined with my pre-menopausal age, I was only put on calcium chews. I guess when I go through the menopause I'll get heavier treatment! Actually I haven't had a bone density scan since (about 8 years ago). I should probably ask for another ... P.S. I've been on steroids for 18 years, including very high doses at the start, and pretty unpleasantly high doses for most of the last decade.
I feel so bad for ranting earlier when I read your posts. I don't have much to complain about compared to what you all have been through.
On Pred for GCA for 15 months. Taking weekly Alendronic Acid. Had a routine Dexa (Pre Pred/diagnosis) and although I have asked cannot get that repeated until the two years is up, which is now. Test has been ordered but I am still waiting. I think that when on long term Pred, Dexa should be allowed yearly.
I have Osteoporisis and fractured my ankle in three places last year. I went to theatre two times and on the second visit the fractures were pinned and plated.
I've been taking prednisone for 7 months, started at 60mg, now down to 8mg.
I have had scans twice
No idea as I have not been tested
I was diagnosed with osteopaenia (after self request for a scan) some years before I was diagnosed with WG. This was treated with Calcium & Vit D & I am also now on Alendronic Acid tablets. I try to ensure a good balanced diet which includes calcium-rich food. I am advised to walk 20-20 mins every day & to do weight bearing exercise. I ensure that I have regular DEXA scans. Happily with all this care my osteopaenia has improved slightly.
The DEXTA scan interpretation suggested slight bone density loss in the spine. I was on Alendronic acid for about 18 months, then it was decided it wasn't that bad and I didn't need to take it anymore.
I by-passed osteoporosis and moved straight to AVASCULAR NECROSIS (AKA OSTEONECROSIS). Bone Death. My treatment for MPA began on 2013/07/27 and within 3 months of prednisolone and prednisone, I developed AVN and have had both hips replaced.
This disease changed my life in ways I never imagined possible. Still, we tackle each day and hope for the best.
Keep forging forward my Vasci friends!
Since osteoporosis treatment for 10 years last decade scan showed my hips have recovered almost back to normal. My spine is still affected
Necrosis due to Pred, replacement of both hips & one shoulder. But without the pred I probably wouldn't be here today. I feel lucky to have had the treatment.
Roll on another summer I say
Tony
I have only had pred prescribed for me for chest infections, once or twice a year, and a daily steroid asthma spray for almost 30 years, at my last dexa scan I had lost 7% density in my spine.
I think a good related poll to post would be one that investigates how many long-term steroid patients have had bone density scans. Because I'm not convinced scans are as routine as might be hoped. No scan = no idea whether they are osteoporitic is probably hidden in a lot of the straight "No" answers to this poll.
That is the plan Viv to have a follow up poll
When I was first diagnosed with WG and they where doing lots of tests , I was told I had osteopenia . Although I had been on a high dose of prednisolone I had only been on it a short while and was told that the prednisolone was not the cause.
I have been on predisalone for 6.5 years and have been taking Alendronic acid or similar for most of the time
I have never been offered a DEXA despite taking pred for 2 yrs ( off them now ), it's on my " too do " list.
It's generally the very high doses at the start that causes the problems with the bones. Recent advice says that AA and similar should be reviewed after 5 years because biphosphonates can cause oesteonecrosis of the jaw and paradoxically cause femur fractures. They can also cause stress fractures elsewhere.
What concerns me is the difference in assessment up and down the country with difficulty in accessing DEXA scans and differing treatments.
Since being on preds I have developed cervical spondylosis, osteoporosis, and osteoarthritis. All within a 2 year period.
I took predisone to test CNSV ten years ago and I have a bone density test every couple of years. My results are always that I am at 'mild' risk of bone breakage. Other than recommendation of continued supplementation of calcium I have not be diagnosed with osteoporosis.
I was diagnosed with osteoporosis a few years before being diagnosed with WG in 2014 so I was already taking calcium supplements and alendronic acid before I started taking prednisolone. I am hoping no further damage has been done.
No, but I am going to ask about a bone density scan, when I return to to see the renal consultant in two weeks time.
I haven't had any problems, as yet, but 'they' do keep a check on this-and other potential 'problems'.
I suffered 3 fractures on my spine 3 years ago whilst on chemo: cyclophosphomide. Apparently my calcium level took a dip for a very short period. The fractures weren't discovered for about 4 months. My calcichew prescription was doubled but I still had considerable pain in my back and hips. I was then told I had OA. After about 18 months it was no better and I asked to see a rheumatologist who said I didn't have OA but had bursitis in both hips, probably caused by my posture change at the time of the spinal fractures. I was also found to have a high uric acid level which has now been treated and has made a big difference to the discomfort. Unfortunately steroid injections in my hips only gave me relief for about 2 weeks. However I guess the good news is that I don't have osteoporosis or OA!! I feel that being looked after purely by the renal team left me with inadequate information about my musculoskeletal problems. I had to start again at the GP to get an appointment with a rheumatologist.
Yes i was told by a lovely Dr at the local hospital after x rays on my back that i had this condition in my lower back, this came about after i got stuck in my bed room & couldn't move, the pain was awful, He told me i had the back of a 80 year old i was 47@ the time x
