Happy new year to all of us.
I'm a 59 year old male, started prednisolone on Dec 16th, 20 mg now on 25mg and still have very sore shoulders and arms but able to walk, did 3 and a half miles yesterday. Woo hoo.
my rhuemy prescribed Fostepor (alendronic acid) and after reading the warnings and side effects got a bit worried. Very common side effect was severe joint, muscle and bone pain. I've just started taking Pred prescisly because of that sort of pain. Has anyone got any advice or reasurance before I start taking this. I, like most people I'm sure, have always shied away from taking drugs unless nessasary so would like to hear as much as I can before I start popping pills.
Peace
Ron
Hi Ron
Welcome to our club. I have had PMR now for 20 months and am still on 13.5mg (down from a high of 25mg). Alendronic is one of the drugs I worry. Was prescribed them originally and told to take one tablet per week (70mg) but after reading what they can do and the side effects you can have I decided to have one month taking them and then one month off. Probably wasting my time that way but better than not taking them at all. On the day I take them my muscles and joints do tend to ache a bit more than usual but within 24 hrs I am back to normal. Hope this helps and good luck. Regards Dave (tavidu)
I hadf just started taking it when y dentist refused to do deep canal work whilst I was taking Alandronic acid, so I stopped for 6 months so the work could be done and changed dentist. The new one thought she was being a bit OTT but said he would sympathise with her had I been taking it for years.
Sorry about the spelling, touch screens don't go well with fingers like mine
Welcome to a new member. Hope your 'journey' won't be too long. Take care.
Most of us steer away from it, but the experts will be along to advise.
Ask for a DEXA (bone density scan) to establish a baseline number T score.
If you are not osteoporotic (or osteopenic) then you don't need it, where's the sense in taking something now that you don't need? Also AA can only be taken for 5 years. If you begin it now when you don't need it, what will happen in 5 years time if you do need it then?
A baseline for both osteoporosis and a chest X-ray should be given to all new patients diagnosed with PMR/GCA, it is in the guidelines for treatment.
Nefret has answered the question. I took AA for a month and felt so unwell that I stopped. My GP agreed with me as I mentioned I need a Dexascan to get a baseline but I have had no problems during my 19 months journey with PMR.
I started on 30 mg of Mr Fred and reduced down to 15 fairly quickly. It has taken me around 17 months to get down to 4.5 mg without any problems. I use the dead slow and nearly stop method.
Best of Luck - John (75)
Have you had a dexascan? I would not take alendronic acid until I had had one that showed I was close to developing osteoporosis. I took a few at the start because they were handed out to me with the pred but I did my due diligence and decided I wasn't happy. When I had the results of the dexascan my bone density was fine and after discussion with a different GP I stopped taking AA. Well over 3 years later I had a follow-up dexascan and the readings hadn't changed at all in the meantime despite being on well over 10mg for almost the entire time. I could have been taking it without needing to for all that time.
It was marketed to a generation of doctors as the perfect drug - no side effects and it would stop everyone from running the risk of hip fractures. Needless to say, that was marketing hype and once it was being used for many thousands of real patients for a long time it started to emerge that with time there were things that develop. There are 2 ladies on another forum, one developed shin splints after about 2 years and the other has bilateral femoral fractures after 18 months - the doctors think that in both cases it was due to AA, which they had both taken for less than 2 years. The FDA warning is it shouldn't be given for more than 5 years as after that the risk of spontaneous femoral fractures becomes unacceptably high.
The recommendation from the British Society of Rheumatologists is that bone protection medication in the form of calcium and vit D supplements should be given pretty much automatically unless there is a good reason not to (renal problems or too high a blood calcium level for example). A dexascan should be carried out in the first few months of pred treatment. If the bone density is OK, it should be repeated after 2 years more of pred. In patients who are over 65 (so post menopausal) they assume they will be osteoporitic and say AA should be given. In fact, these days that is an assumption that is far from correct! Only a dexascan can tell you if your bone density is low. And men are not going to suffer from post-menopausal bone density loss! They can have osteoporosis - I'm not denying that - but it is far less likely.
Many of us don't/didn't take AA for all these reasons - and more. Or because we just weren't given it. But it is NOT inevitable that you will develop osteoporosis - only about half of patients on pred do and unless you have had a dexascan done, it is impossible to know whether it was the pred or because you already had low bone density.
If you google "alendronic acid patient.info forums" you should get a set of links to previous threads discussing this topic - here is what you'll probably get but not as links (it would take me ages, I managed to cut and paste this...)
Bone pain with Alendronic acid.Thread discussing Bone pain with ...
26 May 2015
Alendronic acid losing teeth.Thread discussing Alendronic acid ...
24 Sep 2014
Worries about alendronic acid.Thread discussing Worries about ...
17 Jun 2013
Alendronic Acid and side effects - useful reading.Thread ...
23 Dec 2007
More results from patient.info
Then come back and ask any specific questions you may have.
I'm glad I asked😃
Thanks for taking the time everyone. Lots of useful info as usual Eileen. Will do a bit of reading and see where I stand.
I haven't had a Dexascan but have just had a chest X-ray on Monday. I think that I will hold off on taking it until I see the Rhuemy, possibly in two months time I think..
Ron.
I just had a DEXA 3 days ago; the MD's nurse called and said I had mild osteopenia (which I've had, I'm an older woman), and the MD said I could start on 35mg. fosamax once a week, or wait until my appt.in March and discuss it with him. I'm waiting, and I do NOT intend to take it, there is too much negativity about it. I do not take calcium due to a high calcium blood level, but do take 1000mg. D3, and eat a fairly well balanced diet. I would like to add that in Sept. when we went to a tour in Spain, I tripped and took a very serious fall, big bump on my head, 8" black bruise on my hip, etc. Xrays showed NO broken bones, all though it was painful, of course My PMR dx was Nov. 1..
I strongly believe there is no reason to take a pill for everything, too much hyipe on this. Let our bodies heal as naturally as possible in many cases. Too much pharmacy! Prednisone? Yes! I can fully function and have a life! Yea!
Mild osteopenia is only a reason to take Fosamax because the manufacturers of the stuff say so and have convinced far too many doctors that it is safe/a wonder drug/the saviour of the lady who might have a broken hip. And it is none of the above IMHO.
As the others say don't take Alendronic Acid until you have had a Dexascan and it is proved that you need it. However do take vitamin D and calcium supplement if your doctor has not already mentioned it. Did the pred act like a miracle? You may find that you are overdoing things PMR is very unforgiving and if you feel fine it can come back and bite you for being too active. It is life changing in how you live day to day. Although men often seem to be better off than women, so you may be lucky.
Hi Ron,
I contracted PMR the same age as you and now into year three and finally made it to 10mgs of Pred, albeit with a little pain still. Much like you, I took Alendronic as prescribed by my doctor and had the same side effects. I always felt ill after taking it, so I stopped. I am very diligent in taking a daily dose of Calcium (1200) and Vitamin D (800) and my bone density is holding up very well. If that were to change then I would likely try Alendronic once again.
Good luck with whatever you decide,
Shawn
I'm pretty much not going to take it until I have some new information. I am taking a calcichew and am more aware of my diet.
Yes the Pred did work like a miricle but I don't think I have been overdoing it. I'm walking about three miles a day which is fine for the moment. I was fit before running and cycling so have always been fairly body aware. I'm on 25 mg but my shoulders and arms are still a bit of a problem. I'm wondering if increasing to 30mg for a couple of weeks to see if they improve would be benificiial or whether I have a "tandem" problem similar to my bad back.
The trouble is you often do not know you have overdone it until after you have! 30mg sounds quite a high dose as PMR tends to improve things at fairly low doses unlike other ailments. The normal starting dose is 15mg and sometimes 20mg. Improvement at higher doses can mean it is possibly something else.
I would like to say that we all have different chemical body make ups. I started at 40, am now 30, doing well. The dose has to be individualized
accodring to my knowledge.
I agree the dose can vary, but normally people are given 15mg and sometimes 20mg for PMR, if you start on a higher dose it may improve the symptoms but you may not have PMR. The thing about PMR is that it does react miraculously at a lower dose while other things do not. Of course GCA is started at a high dose.
When my MD suspected PMR he put me on the prednisone deceasing dose pack, 24mg ths first day gradually down to 2 mg. the 6th day. Thke first day did wonders, the 6th day I could feel more stiffness. That seemd to clinch the dx of PMR,
That sounds good. Another method is to give people vit C for a week, then pred for a week, then vit C and see the results. I think your doctor's system is better though.