Your thoughts/ experience would be welcome please.
My situation: diagnosed with PMR Dec2019. Pred dose 15, increased to 17.5 for a couple of weeks, now symptoms controlled at 15 hoping to decrease to 13.5 next week.
Blood tests also indicated I am pre-diabetic, just overweight with BMI 26. Now signed up to pre diabetic program.
My bone scan has shown that I have osteopenia , lumbar spine t score -1.2,femoral neck t score -1.8. Dr wanted me to go on Alendronic acid but I declined as I have a hiatus hernia (20 mg Omeprazole per day) and even with this I was getting reflux at 17.5 Pred. I’ve now been referred to a “bone clinic” to discuss alternative medication.
Also reading others comments about AA I’m not keen.I take Vit D and have been prescribed AdCal.
As I said I would be very grateful to receive the thoughts/experience of others particularly with regards to alternatives to AA. Thanks
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SurreyFlower
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Hello. I’m sure you’ll get more extensive replies but I’ll just say that osteopaenia isn’t osteoporosis. I have it and using the FRAX risk calculator it was deemed I only needed vitD and calcium. However, it isn’t as simple as just pills as you’ll hear about on here. Here is the FRAX tool to plug in the results and some details, just for starters. It gives a guide but does need to be taken in context of your medical history.
Lastly, if you are still having reflux and have a hiatus hernia, I’d say you are a very good case for coated Pred. It solved all my problems that meds couldn’t.
As snazzy says osteopenia is not osteoporosis. Your scores are similar or lower than mine and after my last dexa scan they said dietary calcium was enough calcium. I still take Adcal just to support me however.
HeronNS is very knowledgeable about managing bone density via diet and exercise. To be honest I would defo get coated pred and switch to a nonppi to see how you get on with that. I say this because a ppi leeches calcium too.
You might be interested in this article that was posted a while back...
Hiatus hernia and refux are direct contraindications for AA - and your doctor should have known that.
Two months after starting to take pred my scores were slightly better than yours (in particular the -1.8) and after 7+ years on pred, much of it at above 10mg/day, they were hardly changed. Loss of bone density is NOT inevitable when on pred - though in fact you have an added extra in the PPI but they never mention the risk of osteoporosis when they dish that out like sweeties.
Once the "bone clinic" pontificates - come back with their suggestions because even they seem unable to tell the whole truth about all their options!
The Royal Osteoporosis Society has a helpline and website:
Herons approach to bone Health may fit you perfectly , and AA free.
Not that we are against taking AA when it is definitely needed and the only option available to someone. For some people taking AA is like taking Prednisone , a necessary drug with a bit of a sting.
But we like to let people know that until the figures show that drug intervention is the essential option , getting the suggestions in Diet and Exercise from Heron and people on the Bone Health Forum that can help reverse those numbers naturally is definitely worth it ( you can join as many groups as you want on HU to get the help you need).
I’m on the horns of this dilemma too! My dexa results are worse than yours at -2.2 and I also have a hiatus hernia and silent reflux for which I am taking 15 mg Lansoprazole. I’ve tried alternatives to Lansoprazole but found they do not work for me, unfortunately. I also asked for coated Pred and was given it, but in my case it is not enough to prevent reflux problems. I too was initially prescribed AA but then asked for risodenate as I’d read it was easier on the oesophagus. Neither is probably good for anyone with oesophageal problems. Sometimes infusions are suggested instead for this reason, However, I have put off taking anything up to now except calcium citrate, Vit d and Vit K. It’s a difficult decision to make. The previous posters have given you very good advice - your results don’t seem too bad and after doing your research, you may decide to try the natural way, as advocated by Heron and others. Only you can decide.
Morning, I too am at logger heads whether to take the Alendronic acid 70 mg tablets or not. I've mentioned in my previous posts that I was refused a Dexa scan on the NHS, which in my opinion is disgraceful with being on Pred for the forseeable future. Again all about money, so just keep dishing out the cheapest option. I've now booked a private dexa for the 19th March and hopefully find my bone density is fine. A recent blood test to check it, came back satisfactory. I also take the prescribed Adcal-D3 twice daily and buy the K2 to take at the same time. I was prescribed Omeprazole 20 mg twice a day, but only take one of these
tablets as evidently, it's been shown to cause stomach cancer in some people when they've been taking it over many years. I don't suffer reflux but was told that Pred causes stomach problems so reluctantly take it. The Alendronic can cause eospophagus issues, as it's done for one lady on the forum. All these drugs help one thing and cause problems else where.
There is so much good advice given on the forum, it's all helped me immensely.
I too have an hiatal hernia. I was on Pred for three years being treated for PMR. Prior to diagnosis I was taking omeprazole 20mg twice a day for years. I had also been diagnosed with osteoporosis of the femoral head which had been stable for years on calcium and vit D. Because of the Pred, it was strongly suggested that I go on AA, and I reluctantly did, for about two years. The first week I took AA , I had some pain from an irritated esophagus for a day but it never recurred. My bone density was tested after two years and was stable.
The third year on Pred was a slow taper down from 5 mgs to zero. I stopped AA because of some fears about bone shattering after long term AA usage. After reaching zero, another bone density test again showed stable bone density
Over the last year, my osteopath has been maneuvering my hiatal hernia back down into the stomach. (Barral Institute method). The difference is dramatic and I’ve been able to reduce to one ppi a day, soon to try discontinuing it. I’d prefer to take Pepcid AC because it has fewer long term side effects.
Hi Surrey Flower. I have had pmr for 4 years. I was prescribed AA and ended up in hospital with suspected heart probs. AA can give incredible heartburn and I was taken off and put on to Risendronate which I was fine with, but the down side to these is that whilst they start out helping, after a few years they start undoing what they were prescribed for in the first place - and that is, make your bones brittle. I am not taking any of them now and my GP says fine as long as I have a diet of good yoghurt (preferably organic), cheese and butter. I also no longer take Adcal but do have vitamin D3. Hope this helps.
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