Osteoporosis

[Skodadet]

Does anyone use any drugs for osteoporosis other than biphosphonates? I have osteoporosis. I don't want to get into a discussion about biphosphonates as I'm allergic to Alendronic Acid anyway. But I would consider another type of treatment if anyone has had any success with anything. Due to see rheumatologist for advice but not until June. (And that's the first appointment ever with a rheumatologist after five years of PMR)

[polkadotcom]

Hi Scoda, you could ask about strontium ranelate, calcitonin and denosumab.

I was on Strontium for a year, a bit of a hassle to take, but worked well. I had to stop when I had a DVT, which was a nuisance.

Calcitonin I don't know on a personal level, but have heard it's very good with few side effects. Comes as an injection and/or a spray.

I'm currently on denosumab, have been on it now for 4 years and in that time it has reversed my spinal osteoporosis. It's a sub-cut jab every 6 months, nurse at the surgery does mine.

[cezzie5 in reply to polkadotcom]

Hi Polkadotcom I was put on the prolia injections for osteoporosis as i don't absorb foods and meds very well due to short small bowel syndrome. I was told that it was one injection every 6 months for 3yrs which i completed over a year ago with no follow up. I note that you have been on prolia for 4 yrs and am interested to know if you had any dexa scans or why 4 yrs of ongoing treatment. I am seeing rheumy on Monday and it would be very helpful to have some questions at the ready for him. thank you x

[polkadotcom in reply to cezzie5]

Yes, I have a history of DEXA scans - it's a long story.

The one done 4 years ago showed spinal osteoporosis and it was then that denosumab was suggested. I have been unable to tolerate conventional bisphosphonates ever since I started on this PMR/GCA route.

It worked for me, reversing the osteoporosis and I have been left on the denosumab for now as I have been taking steroids in varying doses for 15 years and will now be on them for life.

Now that my steroid dose is stable (for the moment) it may be that this is my last year on them but apart from the PMR/GCA I have multiple other medical conditions and I don't think anyone wants to rock the boat!

[cezzie5 in reply to polkadotcom]

Hi Polkadotcom thanks for your reply, l will ask my rheumy on Monday about having a dexa scan xx

[Sheila39 in reply to cezzie5]

What is short bowel syndrome ?years ago I had Bariac surgery.. My small bowel has been shortened,I must be really slow on the uptake,it didn't occurre to me to question the absorption rate of the drugs I'm taking for Osteoporosis ....I have manage to reduce Pred to 4 from 20.

[cezzie5 in reply to Sheila39]

Hi Shelia, i was misdiagnosed in my early 20's with irritable bowel, however the pain got so acute that after 12 hrs the Dr's took me to theatre and they had to remove 2/3 of my small bowel as it had gone gangrenous. I have a 1/3 left so they call it short bowel syndrome. I have had numerous ops since for adhesions causing the bowel to obstruct. So I pass a lot of tabs and food out. Well done for getting your steroids down i've got down to 12mgs from 60 but am finding this low dose is only just keeping things at bay.

[cezzie5 in reply to cezzie5]

I should of mentioned that 2/3 of short bowel is approx 12 ft. i hope your bariatric op has gone well x

[Sheila39 in reply to cezzie5]

Thanks Chezzie,it went very well...from 21st -11st in 12 months,I have managed to keep very healthy until this vile,PMR took hold last year.it was 1977 when I had the op. I'm hating the moon face ect do you have any idea when my adrenal glands will start working on their own?. I am on 4mg at mo.,

[PMRpro Ambassador in reply to Sheila39]

if you are feeling well on 4mg then your adrenal glands are obviously producing some cortisol to make up the difference to what your body requires. Your adrenal glands won't work on their own until you are no longer taking any pred and won't work perfectly for probably at least a year after stopping pred - so care in stressful situations will be advisable.

[Sheila39 in reply to PMRpro]

Thank you for that information...this horrible PMR+Osteoperosis,is really getting me down...I'm a very active 76 yr old,with a very large garden + house to look after. Do you think it will ever leave me,I find it more exasperating than depressing,it's horrible to see everything deteriate.

[PMRpro Ambassador in reply to Sheila39]

There is a lady on another forum who was in a very similar situation to you and originally about the same sort of age I think, she's now well over 80 though. Her "garden" is a good 2 acres in a VERY rural position and they were self-sufficient with livestock too I think. She had PMR. it went away, it came back. The second lot was far worse than the first in terms of longer and more fiddling with the dose. Towards the end of that second lot she had a hip replacement. She recovered well from that and got off pred - and was back to helping her partner run the property properly. Just recently the partner had a heart attack out of the blue and is really still very frail and unable to do anything. The decision has been taken to make the place far more user-friendly.

She too found it exasperating to be unable to do what she had done - but you must remember that, never mind the PMR, none of us is getting any younger. Yes, it is possible that you may well manage to get back to doing much of what you are used to doing at some point. But no-one can expect to feel the same at the end of PMR as they did at the beginning, PMR is a law unto itself and will last as long as IT wants to and if you are already well up in your 70s you must consider that maybe it is simply annodomini as well.

[cezzie5 in reply to Sheila39]

Hi Shealia sorry for delay in reply but came out in shingles last week so very tired at the moment. Well done you for losing such a terrific amount of weight you must be very chuffed with yourself! Yep the moon shaped face is horrible. It's difficult to predict when you're at adrenal glands are going to Kick in as everyone is different. I am stuck at 12 mg as the temporal headaches come back. I've been yo-yoing between 12 and 20 mg for over a year. Currently on 12 but PMR/fibro pain has kicked back in. Rheumatologist thinks that the PMR is now fibro. You've done well to get to 4 mg my GP says to do 1 mg every three months. Sending you gentle hugs xxx

[PMRpro Ambassador]

There have been people on the forums who have used teriparatide (Forsteo) which is identical to a naturally occurring substance the parathyroid glands secrete and actively builds bone and a monoclonal antibody medication (a biologic) called denosumab (Prolia). There are fewer of them on each of the forums because not everybody uses all the forums of course but also because these substances are used a lot less as in most cases there is a list of "bone protection" substances which starts with alendronic acid followed by other bisphosphonates and then goes on to the other things in order of cost. You start at the beginning and work through as you "fail" each medication either because you can't take it for some reason or they don't work. Not tolerating one means you should be offered the next - whatever medical system you are in.

[Celtic PMRGCAuk volunteer]

Skodadet, in spite of being on Fosamax for many years for osteoporosis, my aunt still developed a spinal fracture. She was then prescribed Forteo daily injections for two years. It is the only treatment that actually builds new bone, and this treatment proved so successful for her that she no longer needs further bone protection.

[HeronNS]

Well, every pharmaceutical treatment for osteoporosis comes with its portfolio of warnings and side effects. If I were you I'd try to find out what the latest findings are for Forteo before proceeding as this is how it was viewed when first introduced:

webmd.com/osteoporosis/news...

It's possible that after some years of use there has been no statistical increase in cancer in humans, but as we do like to use animals as the model, extreme caution is warranted.