I have a great rheumatologist!

Hi oregonjohn, I had no concerns about AA until I visited this site and read other contributors concerns. I took it simply because as you've said it was prescribed by my gp following my diagnosis from my rheumatologist and I dutifully keep taking it. I've taken it for 11 months but not any more!! I haven't been prescribed vit d, calcium and magnesium but I did some homework and decided this is what I should be taking. Rheumatologist agreed and so I'll stick with that until hopefully I get better soon - well, at least another year I think if my reduction method goes to plan, then I can be back out there playing tennis and running although I still manage to keep myself fairly fit now what with walking the dog and as I live in cornwall there are some of the most beautiful walks in the world. Oh yes AA stays in your body for a couple of months so if I need any major dental work done, extractions etc I must inform the dentist, other than that so long and good riddance to AA. Christina

Hi christina. I recently visited my dentist in Surrey and had 2 extractions (ugh) and asked him about AA. He advised that as long as they were tablet form and I had'nt been on them for years all was ok. I am a fairly fit 64 year old and my doctor advised me to stay on them but I now wonder if I should drop them. I am currently on a course of Anti-biotics as well as the gum has now swollen so not feeling my best today.

Bisphosphonates remain in the body for far more than 2 months - it becomes bound in the bones and in 2007 it was estimated the HALF-LIFE of AA is at least 10 years - that is the time to get rid of half of the load! Why "at least"? Because they'd only been in use for a bit longer than that. I imagine it would now be more like "at least 15 years"

And beware - whatever reduction plan you are using does not mean you will get to zero in a given estimated time. Your search is for the lowest dose that manages the symptoms. If the underlying autoimmune disorder is still active - removal of the pred altogether will lead to a flare, something that has happened to several people on the forums. They got to zero and within a couple of months the symptoms were back. 

Hi tavidu, sorry to hear about the extractions, in the past I had 2 extractions that took 10 minutes and a wisdom tooth that took in excess of 2 hours as the root was hooked and when they took he tooth out the hooked root stayed in and they had to fish about to find and remove it. Couldn't open my mouth for the rest of the day as my jaw was semi locked. As you and oregonjohn have pointed out the length of time with regards to taking AA is key here. 5 years max as they then have the opposite effect and weaken your bones including the jaw bone. I'm no Dr but as steroids do suppress the immune system it's easier to fall foul of infections etc so hence the antibiotics for the swollen gum. If you really have concerns re the AA some users of this site have spoken about bone density tests, perhaps you could ask your gp for one and that could tell you if you really need the AA but as I said I'm no Dr so listen to them and not to me. Do get well soon. Christina

Thanks Christina, am seeing the doctor in 2 weeks time for a checkup so will ask him again. I know what you mean about wisdom teeth, my wife came up with me and also had a wisdom tooth out which was a bit of a struggle. Good luck and best wishes for a smooth recovery (one day soon). Dave (tavidu)

Hi Eileen, you are quite right re the reduction. I got caught out reducing from 9 mg to 8 mg. but forever the optimist I can but live in hope although I realise that recovery time may take longer. but I am hoping that when I start my reduction plan of 1/2 mg it works! Regarding the AA I'm now glad I'm off it.

Were they lower ones? A dentist in the UK refused to remove an upper wisdom tooth because he reckoned it would cause more trouble than leaving it. In retrospect I think he didn't think NHS remuneration was worth the bother. Since PMR started I have had recurrent neck and shoulder problems which came to a head a couple of years ago. Initially they were improved a lot with various treatments, in the event too complex to go into here, but just before Christmas last year it all returned with a vengeance. A local dentist here was perfectly happy to remove the tooth which was still erupting (it started to come through over 30 years ago) and wasn't opposed by a tooth to bite onto as it was squint.  I have to admit I was terrified, being on pred and warfarin-like stuff, but he was totally blase about it so I decided since he was opposite the entrance to A&E I would trust him. It was a doddle - the longest bit was having the injection and waiting for it to take. He showed me the tooth - a simple single root tooth - and said upper ones were rarely a problem. 

And the best bit? The shoulder and neck problems have gone! There is a bit of tension still there in the shoulders but nothing like it was before and it is improving.

That tooth was interfering with my bite and the neck and shoulder muscles were under tremendous strain. I knew it could happen - just didn't believe it could be that bad and anyway, that dentist in the UK had scared me enough not to ask any of the dentists I've had since (who were MUCH better) about it.

Hi Eileen. I had 2 upper teeth removed, one was an old crown and the one next to it, and my wifes wisdom tooth was a lower. I was advised that there may be a bit of tooth left in hence the quick inflammation and anti-inflammatories. Since the doctors mess up 2 weeks ago I have had to up the preds to 25mg again but feeling a lot better now so may consider a 2mg cut in a weeks time and stay at that till the end of the year. Hope you are well. Dave (tavidu)

I'm going to bang on about Bowen therapy again - I'm not going to claim it will "cure" the PMR problems but I really do think it would be worth a whirl if you can find one locally. Releasing tight muscles can make a big difference to certain bits of PMR - sessions approximately every 6-8 months kept me going for 5 years with no pred. When they were no longer available it got steadily worse and I really don't think it was coincidence.

I am going to look for a "Bowen" therapist....anything that will help I say!  I went fron 5.5mg, after pain returned, (dizzy, feeling faint also) to 6mg, and still pain, so for last three days upped it to 7mg, I am still in pain, but hoping it will ease soon.....What we can read, can be confusing regarding Polymyagia, some say, after steroids, it `s gone, some say it masks it, and others it returns...no wonder we are all confused about lowering steroids, and even worse doctors don`t advise correctly either.  I should be used to this having had ME/Fibrmyagia for 20 odd  years, but it still angers me....yes steROID rage I`m afraid!!

Anyone who says that PMR has gone after steroids has no idea what they are talking about. Nor is it really correct to say the pred "masks" it. 

PMR is the name given to the symptoms of an underlying autoimmune problem - and the pred acts as the only effective pain killer to manage it. The pred deals with the cause of the pain, the inflammation, but not the cause of the inflammation, the autoimmune disorder. But because of the possible side effects of pred you need to find the lowest dose that works for you instead of using a sledgehammer to crack the proverbial nut. I felt great at 15mg, could happily have stayed there for years, but it isn't a good idea!

But if you say you have had ME/fibromyalgia for 20 years then I do think you might well benefit from Bowen. I had what was probably the "herald" illness of ME when I was about 29 and although after the typical 6 months I did recover pretty well, I had ongoing back problems and pain issues which, when the PMR appeared as an identifiable entity, meant there was a toss-up between PMR or fibro as the options. Pred worked its miracle on a lot of it, the definitely PMR component, but Bowen had worked for a lot of the other things in the meantime.

Thank you for that, when I was on 15mg, I felt the best I had felt in 25 years, my friends and family said "like a car with a new engine" but alas as you said, can`t stay on pred at that dose......it took away ALL my pain of fibro as well......but made me realise also what I was missing!!   So will try anything to give me a painfree life and just a little energy would be welcome....especially with xmas coming!  Thanks again....

Hi linda, I'm no Dr but this is what I think about PMR. The PMR whatever it is causes the inflammation that in turn causes the pain. Pred is used to reduce the inflammation and once the inflammation is reduced the pain reduces. PMR is self limiting but once burnt out we are not cured. PMR, whatever it is, lies dormant and can be re activated under certain circumstances, the experts are unsure of what causes / triggers PMR or its return. Because the condition is self limiting its current flare could last for many many years and that's why it's so difficult to get the pred dosage just right because if your flare is taking a long time to burn out then it goes that you will have to stay on that higher dose that is controlling the flare. So does pred just mask PMR? Well as I said it reduces the inflammation that causes the pain, so I suppose if I put it like that I suppose it does just mask the current flare. But as I also said, once the PMR has burnt out it lies dormant and may never, never return. Hopefully, Eileen knows more. Christina

That confirms my suspicion - pred doesn't deal with true fibro pain, it has a different cause. It isn't uncommon for patients to be told they have fibro but it isn't - and I suspect that is why under-50s get labels other than PMR, they aren't properly diagnosed.

And I suspect too that fibro is the lazy doctor's answer when faced with a patient who doesn't tick the right boxes. I'm not saying fibro isn't a real illness - I'm saying a lot of people are told that is what they have when it isn't.