Mrs

[Carriacou1937]

I had Avascular Necrosis of the hip, and needed a total hip replacement. Now eight months after the op, I now have it in my shoulder and will need surgery. AVN was steroid induced. Four years on PREDNISOLONE on varying doses. Monitoring was poor by Rheumatologist. I feel I should have been warned, especially after the hip.

[Rita83]

I am so very sorry. You must feel very frustrated. One really does need to find out as much as possible about one's condition.

I suffer with steroid-induced osteoporosis and fragile skin (collagen layer destroyed) due to the fact that after I was diagnosed with CSS I was returned to my local hospital and was treated by the same asthma consultant who left me on a very high dose of prednisolone fpr months.

When I became aware of the fact that he knew nothing about osteoporosis or CSS I asked to be referred for a Dexa scan. I also wrote to the College of Health who found Dr Graham Hughes at St Thomas's Hospital who was an expert and a researcher into vasculitic diseases and 27 years ago my GP referred me to his care.

From that time on, whenever there was an interesting article in the National Osteoporosis magazine about prednisolone or osteoporosis, I used to send this with a very tactful letter (of course!) to my old asthma consultant and, to give him his due, he soon began to refer his high steroid dose patients for a Dexa scan. Too late for me but I hope it helped others as you have to remember that this was prior to th Internet.

If I had not taken this course of action and found the proper care I would not be here now, so I was told.

I hope this will be of interest to you, even though it may be of no help.

I wish you better care for the future.

Rita

[xz3sgn in reply to Rita83]

Hi Rita,

Thnx for ur commnetd.

What dose of predislone were u on ?????

Cheers

Mukesh

[Carriacou1937 in reply to Rita83]

Thank you Rita for your reply. It took six months before my consultant listened to me about the hip pain and referred me for surgery. After the hip replacement,I complained about my right shoulder being very painful, and suggested it could be the same Avascular Necrrosis. I was told this was extremely rare and I continued with the PRED. and Methrotrexate . The X Ray showed Avn and unfortunately it is not reversible, with surgery the only option. I took it on myself to reduce the dose. I saw him two days ago, and he is now reducing the dose and increasing the Metrotrexate.

I posted my problem as a warning to others on steroids. I only learnt about AVN through my own research.

Yes, time for a change of Rheutologist. Thanks again.

[Rita83]

I was taking 40 mg of prednisolone for several months.

The whole story is that when I was diagnosed with CSS the neurologist in Middlesbrough put me on a very high dose of prednisolone which should have been reduced gradually.

Abot 5 months later I was on my mobility scooter in town when I was stopped by one of the Middlesrough neurologists who asked me how I was and what dose of steroids I was on. When I told him it was 12.5 mg he was horrified and said that it should have taken 18 months to reduce me to that level.

He advised me to contact Dr C and get back into hospital S.A.P. As soon as I got home I did as he requested and was told to get back into hospital before 4pm. This I did and was put in a ward on my own. Eventually, Dr C. arrived and stood outside my room for several minutes before going away. He returned the next morning but I thought it inappropriate to involve the other doctor who had a clinic in the same hospital so I said that I had been feeling unwell, which was true. I also said that I thought that the dosage had been reduced too quickly. He then suggested 30mg but I said that I had felt better on 40mg. This he agreed to and it was not until I went to Darlington hospital for a different test that a horrified doctor told me of the dangers.

By that time I had developed osteoporosis so I set about finding a doctor who was an expert in vasculitic diseases.

Forgive me if I've told you this already but I have memory problems.

I am fortunate in that all the rheumatologists I've had have been very patient, have always listened to me and answered any questions. But with GPs it can be a totally different story.

I do sympathise with you and hope that things will improve for you. Unfortunate;y, we often have to live with the mistakes that a careless doctor makes.

Rita

I

[Carriacou1937 in reply to Rita83]

Thank you Rita, My appointment for MRI just came in the post for April 11th Mar. Rheutomologist abroad for Six Weeks. I have increased the Metrotrexate as advised, and lowered the Steroid to 6mg today.Feeling pretty awful today. I had a Dexta about 2rys ago, Osteopenia lower spine. Should I ask for another ?

I have had all these tests and Scans, but I am so much worse than when this all started. For me the treatment is much worse than the disorder. Diagnosed wth PMR 4 yrs ago. Changed to RA. because of inflammation, which I didn't have for the first two years. Hoping for some sort of turnaround soon.

I wish you all the best. Joan

[Tony-LakeDistrict]

Hi. I've had 2 new hips & a new shoulder. steroid induced necrosis. there was no other way to go. My specialist kept me up to date with the pros & cons. sometimes you have to put up with the awful. so as to have the best final result. For me the steroids & mycophenolate mean I'm still around. I'm happy with that

I think some specialists find it difficult to give you the hard facts, I was lucky with mine.

Best of luck

Tony

[Carriacou1937 in reply to Tony-LakeDistrict]

Hi Tony, I am happy for that you got through so much. I am interested to know if you were warned that the steroids could cause AVN. I was complaining about the hip pain for months before I had an X Ray .Too late the damage was done. Then when I said I was worried about my shoulder, it was brushed aside saying it was very rare and not to worry. Well I am up for surgery of the right shoulder,God knows when. My worry now is that my left is hurting more although the X Ray showed only osteo arthritis. I believe it is well advanced by the time it shows up on the X-ray. How did you manage after the shoulder op? I am due for an MRI in April. Why were you treated with steroids? Mine was PMR for nearly 4yrs All the best. Joan

[Tony-LakeDistrict]

Hi Joan

I have Microscopic Polyangiitis, diagnosed 2007

I was on pred for two years 50 down to 2ml

My treatment was Cyclo & Pred followed by mycophenolate etc.

Possible side affects were discussed, also that it was a balancing act. Treatment & side affect, treatment always had to come first.

My specialist told me that there was no one treatment, everyone was different, in fact we all in some ways are guinea pigs. Many of my blood results at that time were of the scale, but now i'm happy how things have turned out

As for replacement hips & shoulders, I don't know where you live, but if possible try to get referred to Wrightington , it is the best place for replacements in the UK, & they have wonderful results.

I have full use of both legs & shoulder, I'm 72 & feeling good

Best of luck, thank goodness summer is on the way

Tony

[Carriacou1937 in reply to Tony-LakeDistrict]

Thank you Tony. I had excellent treatment at Bournemouth Hoapital for the hip replacement, except it was a waiting game even though I was on the urgent list. I pestered admissions until I got a cancellation. The hip is the best part of me right now. No awful pain, and relying on that leg to keep me going. I dread the shoulder op though. I worry about being pretty helpless doing the normal things, showering, dressing, especially because the left shoulder is giving me so much trouble. Did you have proper Physiotherapy after op? I say proper, because it was offered, no physical contact, just an info sheet of exercises, which I could get from the Internet.Are you free of AVN now? Do you need regular X-rays or MRIs to monitor.? Very best wishes to you. Joan

[Tony-LakeDistrict]

Hi

no problems, just the normal aches for someone of my age .

I did find the shoulder easier to deal with than the hips

You should find the information on the sheet of exercises all you need, after 6 weeks I could lift my arm horizontally above my head, just don't overdue the lifting.

you be surprised at how quickly you feel normal.

I'm not the "god like figure" I was 50 years ago, my wife says I never was, but the shoulder looks fine .

All the best Tony

[Carriacou1937 in reply to Tony-LakeDistrict]

Thanks Tony