Does everyone take this to protect against osteoporosis when taking prednisone?
GP suggested it when discussing steroid ( which I have not taken yet) but a few people have suggested I should have a bone density scan before taking this.
I have mild symptoms at present so have put of taking anything yet.
Before you decide:
1) Ask your GP for a Dexa Scan to check bone density
2) Go to the Royal National Osteoporosis website and check other meds.
3 Hopefully HeronNS will see this post.
My mantra is NO dexascan - NO AA.
Not sure what you mean by mild symptoms - there are none of reduced bone density, the only way to know is to have a dexascan,
I had a dexascan within the first 3 months of being given pred. It was fine and nowhere near a level that required more than calcium and vit D supplements. After nearly 12 years on pred - it has hardly changed and is STILL good enough for the local osteoporosis expert to express amazement and tell me to continue as I had been, In the last 2 years I have increased the amount of dairy and other high calcium foods and take 4,000 IU vit D because I was having problems with the calcium creating grit in my urine which wasn't a pleasant effect! I am not the only person who took only calcium supplents and a few of my PMR/GCA friend never even took calcium.
AA has its own downsides. I don't have a problem with it being used when required - but it should never be used "just in case". Keep it for when there is proof it is required.
By mild symptoms I mean no severe pain which I can not cope with as yet - so I have not taken any drugs or decided whether too.
What I meant really is that there ARE no symptoms for requiring "bone protection" as they put it, it happens in silence without any evidence until maybe you have a spinal fracture or other broken bone after a fall. Most side effects of pred are manageable without medication - a low carb diet can help with avoiding weight gain and developing steroid-induced diabetes. There aren't many that medication is required for - the medication I take, other than pred, is for other problems.
Where are your 'mild symptoms?
Sorry probably not a good description. I have left shoulder and arm discomfort and some in right arm. But quite liveable with so I am unsure whether to take pred and alondronic acid
How long have you had symptoms? Have you had imaging done to show what inflammation is present and where? It is possible to have both LVV (large vessel vasculitis) and GCA without many symptoms but the inflammation is there and causing ongoing damage to the tissues.
No I have had blood tests and one phone conversation with GP when he told me I had PMR and was going to give steroids and alondric acid. I had never heard of either condition or treatments so I declined until I researched into it all. Hence I am here. I am not confident about taking these very difficult drugs unless its essential.
So has the GP actually done a physical examination? Is there anything besides the shoulder problems and a raised ESR/GCA?
What you seem to be describing isn't entirely typical of PMR and if the symptoms are livable with I would want rather more evidence I needed any of the drugs. I lived with PMR for 5 years unmanaged by pred. It was no fun and it really disabled me and affected my life. However - had it continued as it had been in the first year, I too would have said pred wasn't worth it. It didn't - and when I was finally given pred the relief was unbelievable. I have no desire to go back there.
There is no evidence - but quite a few of us who had very delayed diagnoses have ended up with what we are starting to call LongPMR and struggle to reduce our pred dose. It may be coincidence. But maybe it isn't.
Has the GP diagnosed PMR? Has he given you steroids? If not I should wait for a diagnosis and go from there.
My rheumatologist suggested it after a dexa scan of my hips but the possible dire side effects just did not seem worth it to me
As soon as I started with PMR my niece who is a GP said I should go on to Alendronic Acid. My Rheumatologist pooh pood the idea and so for two years I did not take them although I was struggling to lower my Pred . I asked for a Dexa scan after a while and guess what , I now have Osteoporosis . I have had no side effects from the AA though it is a bit of a pain remembering to take them each week at the same time and make sure I stand or sit for half an hour and drink lots of water .Tiny tim
Did you have a DEXA scan first to see if you already had it or were on the way before taking Pred?
Hi TURQ8 have taken AA for 4 years and had no problem ,I have ostoprinia so a milder form and my sister also takes it for osteoporosis and she has had no problems I'm also on prednisone but I know you can only take it for 5 years and just to say dentist hate the stuff can cause a problem if you need teeth out .take care.
Thanks, I have been told about dentists so not sure how that will be handled, but will forewarn my dentist. Thanks for replying - its really helpful. I am about to start taking it.
The advice is to see your dentist before ever starting AA, discuss any potential future need for invasive work and get it done if appropriate. Personally, I think it is preferable to be sure you need AA before even discussing the AA.
Well if it helps my bones ill take it x
AA comes with its own problems which is why you should really research and decide whether the risks outweigh the benefits. Depending on condition of bones, your starting point, you may well be able to improve bone density with no medication. Doctors don't believe this is possible, but it is. You still need some supplements (D and K2 - not K1) and a healthy diet and appropriate exercise. But the only side effects from that are overall improved health. No risk of jaw necrosis, atypical femur fractures, gut problems....
Thanks HeronNS all good to know thy just give it to us as soon as we start pred but asked Rheuy if I could stop it she said no not yet,but I have done for a few months my sister has same as me ostoperina and she doesn't take it its because of steroids I know that,so thats 4 years on it think I can stop now, take care x
Actually, yes, I believe you should stop it after four years. Best. 
So glad you are doing your research! Have you tried physio for your physical conditions? Or, really, any sort of non-extreme exercise? I ask because back in 2014 I thought I needed to exercise more, that my pain was caused by being in poor condition (although in retrospect there was no reason to believe this). It didn't help, and physio made it worse. In fact the physiotherapist I was going to at the time gave up on me and recommended massage therapy, which I disliked and it did no good. My then-doctor thought it was just osteoarthritis getting worse. I googled my symptoms, actually came across polymyalgia, but dismissed the idea when I saw it was treated with steroids, surely I couldn't have anything so serious! By the following year when I finally saw a doctor who recognised my symptoms right away, I stopped at the pharmacy on the way home and took my first dose as soon as I was home! If it's not PMR, physio likely would help.
That's pred dealt with. Now for alendronic acid. My doctor did want me to take it, but was a bit equivocal. Not so much, you must take it as her thinking out loud that she should prescribe it. She became a bit more definite after she attended a physicians workshop on treating OP (go figure 
) I did ask for and got a DXA scan. Was told I had osteoporosis. This was a mistake, the report provided to the physician was actually not very clear and she misinterpreted "low bone mass" as OP when they really meant osteopenia (more accurately called low bone mass, but there you go, language changes). In any event I was completely freaked out. I insisted I needed to know my t-score, and this was an adventure in itself but finally got it two months later. By then I'd done so much reading, and talked to friends, I'd decided I wouldn't take bone meds even if I was crumbling into dust. I might not say the same today, but I haven't needed to take anything. The story I wrote about my osteoporosis adventure is here. Some of the links may be dated but the gist remains true:
Thankyou for your detailed reply and I have read your story too. I have had a diagnosis of PMR from blood tests so I am assuming it is accurate. Now we only get phone consultations I think it is more difficult somehow to get a good feeling from the GP.
After talking to many people, I have decided to take pred as it seems the only route to getting over it. As much as one can. I will ask for a dexa scan which would seem a good idea anyway.
I am pretty active now though I had a few bad months in lockdown. Walking, tai chi and swimming when possible. Thanks again.
There is no definitive test for PMR - diagnosis is on the basis of the clinical presentation (symptoms and history), blood tests are just part of the clinical picture and both ESR and CRP are so general markers of inflammation that there are many causes of them being raised. In up to 20% of cases they remain within normal range - though that doesn't mean they aren't raised for the patient in question.
When the doctors told me that I was to go on alendronic acid I asked for a bone scan as a base line and was told I did not meet the criteria? Having then discussed it with our local group they generally came out against it. Having suffered from bony Spurs in the past I did not want to take something that added to this problem. Finally I discussed it with my very knowledgeable young dentist and this gave me the confidence to refuse the medication. Two years of pred later I had an X-ray after a fall and received an unprompted comment that my bone density looked really good.
We are all different and I think we are (with the wealth of knowledge and experience available on the forum) sometimes the best judge of our own health issues. Doctors often follow the generic route, but one size does not fit all of us.
Good luck and best wishes.
They were wrong about not meeting the criteria for a dexascan - being on pred is a risk factor. Of course, underfunding is to blame for a lack of the machines - the one in the department my husband ran needed a new one and he had charitable funding for the capital cost of the machine. This was a replacement for a service already funded by the NHS but the funding was rejected because it didn't cover disposables and operators. sheer nastiness on the part of a CEO trying to dismantle the biggest medical physics department in the country. He's been caught for fraud now ...
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