Saw a different rheumy (at same hospital ) who was a bit cross with me for not starting alendronic acid, when I did not realise I should have been on it. (Last rheumy had sent me a copy of letter to GP in which it said I needed a prescription,) and apparently I should have got a GP appt to request it... Anyway I hadn't cottoned on to that. Anyway long story short she feels I need to be on it, but I feel really uneasy about it.
I am taking calcium and vitamin D most days, and getting some weight bearing exercise (tennis) a few times a week, though on reduction to 10 mg pred I feel very much more tired than I was a couple of weeks ago. So finding a couple of sets a bit too much.
2 questions really
1. Pros and cons of alendronic acid
2. Might increased fatigue 2 weeks into a reduction from 11mg to 10mg be relevant? I started on 20 mg for PMR on 19th Jan. I had a VERY busy weekend with a large birthday party to organise which seemed to wipe me out. I have been v lucky so far and been able to work nearly full time, but have felt rubbish since the weekend.
Any comments will be gratefully received.
Thank you very much.
Mary
Written by
Mary63
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Have you had a Dexascan to check your bone density, this should give you a feel if you need Alendronic Acid or not. I don't think I would take it without having a scan first though.
I agree with piglette, do request a DEXA bone density scan to see whether you need treatment such as Alendronic Acid at this stage.
Although some medics hand out such drugs as AA automatically as a precaution alongside steroids, it carries its own risks and is recommended not to be taken for more than 5 years without a break anyway, so better to be reserved until if and when needed.
I was never prescribed AA in spite of a 40mg steroid starting dose and 5 1/2 years on steroids, and my bones remained intact. No calcium plus Vit D either due to a misunderstanding between my GP and rheumy!
If your bones are fine at present, then the daily calcium plus Vit D should suffice. But do request the DEXA scan in the first instance.
My rheumy said I should have this bone med and she contacted my endocrinologist to prescribe it. I told my endo hey, I haven't had a bone scan in years, let's see what's going on. She ordered the Dexa and the scan was compared to an older scan. My hip had improved and there was such minor deterioration in other areas that it was deemed "insignificant." End result: Endo told me to continue with my Vitamin D and calcium and I didn't need to start bone meds.
Your question about the pros and cons of AA. The more research that is being done, and the more people have been on this and similar drugs, the fewer pros and the more cons there seem to be. Personally I would not take this medication even if it was felt I needed it (and my doctor says I do, although I believe she's wrong). As long as you have no "fragility fractures", in which case I would not dare to advise you, there are alternatives to drug treatment for "bone thinning" which are safe and as long as not misused (too much calcium or too much of some other supplements for example) will help your bones and the rest of you stay healthy.
I think the key is a healthy, well balanced diet, including a few supplements, and as much of the right kinds of exercise as you can manage - specifically weightbearing, like walking, tai chi, Nordic walking. Swimming and cycling are good for muscles, which helps with fracture avoidance, but don't actually build or maintain bone very much.
As with PMR, avoiding stress as much as possible is also good.
And feeling rubbish? Of course you will after a combination of a reduction and a big do! Try to get a bit of extra rest. Coddle yourself. Really! And when you are ready for your next reduction, please consider the dead slow nearly stop plan, if you aren't already using it.
Thank you all for your comments. I will ask my GP for a Dexascan, and take it from there. I feel I cannot do anything but 'rest up' at the moment , so will do so, and be very careful not to overdo it then in the future. My next reduction is due at the beginning of August and I will do .5mg reduction by DSNS method.
My GP wanted to prescribe a medication to protect against osteoporosis, alongside Prednisolone. I had a bone scan that showed that my bone density was above average for my age (62). So I declined. I don't want to complicate my symptom picture, so that I can properly monitor the Polymyalgia Rheumatica. I rarely take Lansoprazole ( gut protection) for the same reason. All these medications have side effects. How can you know how you really are? It makes me feel pretty alone though and faintly irresponsible. I do think this senior GP tends to over medicate /prescribe and doesn't really listen. He was quite different 20 years ago, perhaps being a GP overwhelms you in the end. Who knows? Yet he makes me feel like an addict about Prednisolone because initially it was a wonder drug and I'm struggling to reduce my dosage 20mg -15mg. I do take Tramadol ( pain killer) every day, I find that it helps and does send me back to sleep in the small hours. It worries me though. I trained as a Homeopath years ago and for years took nothing chemical. What a trap this condition is. Moan over. Like it or not we have to be in charge, do research and fight our corner. Nobody else is going to.
How are you trying to reduce? If it is from 20 to 15 in one step it is no wonder you struggle - 1mg at a time is too much for some people even at this level. Spreading it over a few weeks can help a lot:
Same from me - no decision until you have had a dexascan. It is said that being on steroids increases your risk of a fracture whatever the readings on the dexascan but my bone density is OK and hadn't changed after 4 years on pred at above 10mg/day. AA is not without its own risks and I would prefer to keep it for when there is an arguable need for it. You shouldn't take it for more than 5 years without a holiday from it and there are 2 ladies on the forums who developed fractures after less than 2 years - one is definitely due to the AA, for the other it is likely. Other people have jaw/tooth problems and yet others gastric problems. There are other substances - AA was particularly well marketed at the start and is the cheapest.
As for being tired - I'm not surprised at all if you work full time AND then arranged a big party (and no doubt also went to it!). In that sense, yes it is relevant. In PMR pacing is essential:
You have to look after yourself now - if there is something to be arranged make sure you have help and you just direct. Otherwise you will feel wiped out for possibly weeks - your body takes much longer to recover from exertion than normal because of the autoimmune part of PMR. If you really overdo it you could find yourself unwell and unable to work altogether for some time - it is a possibility you must always bear in mind.
Right .....thanks to all of you. Will make GP appt to request Dexascan. Will rest. Can only work part time this week cos of how I feel anyway. Can't play tennis as usual so will wait a week or so and see how I feel. Then DSNS regime for next taper.
When I saw my hip surgeon he advised me not to take Alendronic Acid, he felt it caused more problems ....Rhuemy says take it...I am doing some research for alternative and have been told about twice a year treatment called desanabab ( or something like that). As soon as I have had my hip surgery I will ask for that...
Denosumab, or Prolia, works much like the older bisphosphonates by suppressing action of the osteoclasts. In fact I think it actually kills them. These cells are vital for healthy bone remodelling. There is also some thought that they play an important role in the immune system. Eat high calcium foods, and make sure you get Vitamin D3, Vitamin K2, magnesium and a few other things (some suggest silica, I haven't researched this yet) which will help with bone health. Weight bearing exercise is also crucial - walking, Nordic walking, tai chi have all been shown to help with maintaining bone density, or even increasing it.
I have osteoporosis and was diagnosed with scan. I have COPD and bronchectasis and had steroids from December 2015 to March 2016. I am meant to take AA but don't like the look of all the side effects and with research don't fancy taking. I take calcium/vit d and always looking for a natural alternative to AA. Good luck
I have osteoporosis, too, ol-ly11...and I won't take the Reclast or any other medication for it. I'll just take my chances. The side effects of these drugs are just too scary for me.
Yes I feel the same at the moment. I really don't like the sound of all side effects. I take calcium/vit d from GP and some other general supplements. We must compare notes as time goes on and see!
Hello Mary63. My spinal consultant referred me for a bone density scan, earlier this year. Result; very thin bones and put on Alendronic Acid, which was so awful, I stopped it . I now take Ibandronic Acid Mylan instead. I am 69 and been on steroids for 10 years, with 3mg, daily, at present. I have the start of Dowager Hump....something I have always dreaded, so I do need this tablet, as well as Calcium tablets. Lasrt week, I was diagnosed with Water on my lungs. I take very little exercise due to breathlessness, but we all do whatever our circumstances allow. Hope you soon fel a lot better.
I was put on prednisolone 10 months ago. No one contacted me for 6 weeks when I got a letter that was written 5 weeks before. The GP had received it electronically 4 weeks before me but hadn't contacted me. It was from rheumy I hadn't met and said I should be on AA as well as ameprozole and calcium plus vit d. I started on them then. Am also on blood pressure tabs. I don't think I get any side effects from any of them, but ever since I reduced pred to 40mg I have gone back to getting head aches and eye pain every morning, which I have to take co codamol to clear. I am now down to 8 mg pred but still getting pain. Rheumy and GP don't seem to have any answers. I get the impression that they can't be bothered to help.
Trying to get a Dexa Scan here is a mountain to climb in itself! If you can get the GP to agree to it the hospital then refuses it deeming it is not necessary!
Two friends have both had dexa scans in the past and were advised on their original reports to have follow up scans 3 years later. That time has arrived and the GPs sent off their letters only to be advised by the hospital that they no longer met the criteria for having them done. Another friend needs to have one before starting Pred and her cancer nurse has said we will have to word this application very carefully as the hospital are turning lots of requests from GPs down.
Anyone on pred should automatically meet the criteria for one every 2 years at least.
If all else fails it is possible to have one done privately - amongst other places, Southhampton for example offers the service for £55, as does Bristol for a similar cost I think.
Despite some bone density deteriotion at 2 yr scan, I am still dubious Alendronic acid will be beneficial given the known risks and have personally decided not to take it. At a meeting of our support group I did get opportunity to talk to the speaker,a Pmr researcher at Keele. He told me the recommendation now is to only take AA for a maximum of 2 years.
Article in NY times about how exercise doesn't help bone density - actually quite positive because it says exercise may (studies show it does) improve bone quality. And an admission that the bisphosphonates don't improve bone density. If what we want is improved bone quality, then exercise and nutrients are the way to go! Research has already proved this. But we have to do our bit, too, by actually doing the right kinds of exercise, and eating the right kinds of food and taking appropriate supplements - all of which appear to be moving targets, but one does what one can....
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