Osteoporosis: I have finally got the results from... - PMRGCAuk

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Osteoporosis

kingharold11 profile image
5 Replies

I have finally got the results from my GP re Dexa scan that I had last year and like he said did they only scan one side?

AP Spine(L1-L4) -2.9 osteoporotic

Femoral neck (left) -2.8 osteoporotic

total hip (left) -1.8 osteopenic

They have put lifestyle advice as avoid smoking (I never have) excess alcohol (I don't drink) take regular weight bearing exercise I have walked reasonable distances all of my life I still manage 4 miles a couple of times a week sometimes more. The recommended blood tests that the rheumy did ESR, 9 CPR normal, Calcium normal, Vit D normal, and a thyroid test which I can't remember the full name but my doctor said it was normal.

My GP has agreed to my having denusomab if I want it has anyone got any gen on it? The main thing now as far as I am concerned is to get off of steroids I am on 8 1/2 at the moment, I am not happy with it but I have tried to reduce quickly as I was on 5 before the nasty water infection that I had which knocked me for 6 but it didn't work. We are going away on the 12th July for a week so I want to feel well then and when we come back I have a colonoscopy to look forward too after that its serious steroid reduction. I feel as if the PMR has receded (dare I say it) Wendy

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kingharold11
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polkadotcom profile image
polkadotcom

Hi Wendy, I've been on Denusomab for 3 years now, no discernable side effects at all and in that time it has completely reversed the osteoporosis in my spine.

I was given it because for various reasons I couldn't take any of the biphosphonates or other types offered and although I was worried (obviously, due to previous experience) I went ahead with it and I'm glad I did. It's given as a sub-cutaneous injection, usually into the thigh, twice a year. You can check it out if you want to, the brand name is Prolia.

kingharold11 profile image
kingharold11 in reply to polkadotcom

Thanks for replying I will look into it. Wendy

kingharold11 profile image
kingharold11 in reply to polkadotcom

Do you have this injection at your GPs or at a hospital? Wendy

polkadotcom profile image
polkadotcom in reply to kingharold11

Initially at hospital, but the last 3 have been done at the surgery. No real problems, I just need to make an appointment for bloods (kidney function and bone profile), order in the injection and take it with me to the surgery for the jab. I usually arrange this appointment when I go for the bloods to be done.

paddyfields profile image
paddyfields

I have done more exercise than ever in the five years since being dx with PD and don't smoke or drink alcohol The only cause I can come up with for my losing ground,from above average into osteopenia, in relation to my sex and age group is the fact that I have during this period had several steroid injections and limited courses of prednisone for my as yet undiagnosed hip problems. I am way past the menopause so that's not it. Rheumy doesn't think I have PMR. Steroids are a known risk factor for osteoporosis and this is borne out in my case even although I have not been on anything like the doses others have been

By the way what part of the statement "I am 100% better mechanically (as opposed to vague aches and flu' feeling)

24 hours after starting steroids - real throwaway my stick magic effect" -does anyone suppose is so difficult for medics to get. Similarly "can only get upstairs one step at a time hanging on to the banister" might as well be in Martian for all the notice they take of me. They will not record this miracle effect of predisone and persist in recording slight improvement and the like. I must say the second rheumy I saw has given me a very thorough going over, neurological tests, bloodtests etc. she has written a great deal else is based on my medical diary which she asked for a copy of.so we live in hopes.

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