I would really appreciate your views on taking these meds. I went to see my rumy 2 weeks ago and unbeknownst to me he prescribed them and Ad-cal, the doctors rang me and said my meds were ready for collection but I will need to see my dentist before taking them and to make sure you read the leaflet CAREFULLY. Well that was enough to scare me. I've started taking the Ad-cal as I've never had a lot of calcium in my diet but not happy about the AA. I'm going for a bone scan in a couple of weeks.
I've never been higher than 20mg of Pred, reducing to 15mg on Monday 😁
Thanks
Ange
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Angex05
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Don't even think about taking AA before you have the bone scan and the results from it. If there are no signs of problems (i.e. osteopenia) then I wouldn't touch it with a barge pole. It can be taken only for 5 years - if you don't need it now where is the point in taking it? It will leave you with nowhere to go if you do eventually need a biphosphonate.
Angex, wait for the results of the bone scan before taking AA. Some doctors give it out automatically when prescribing steroids for fear of the steroids thinning our bones. But if your DEXA scan shows normal bone density now, then the Ad-Cal should suffice. I was lucky to get away with not being prescribed AA automatically, and nor was I prescribed a calcium supplement due to an oversight between my rheumy and GP. I just had the smallest amount of bone loss, just into the osteopenia range, and that was in spite of a high starting dose of 40mg Pred. There has even been a slight improvement showing in my latest scan a couple of years after coming off steroids.
You would be wiser to reduce to 17.5 rather than going straight to 15mg in the first instance by the way.
I know there's a lot of people on this forum, and others, that are very anti AA. But for some of us it is a necessary evil. I am one who is susceptible to osteoporosis having had a hysterectomy at the age of 37. I also saw how my mother's life was curtailed when she broke her hip in her 70s, and did not want to follow in her footsteps.
It is recognised that Pred can increase the risks of osteoporosis and can, in some cases, affect the strength of muscles. That muscle wastage can of course increase the risk of falls, and therefore the possibility of broken bones.
I am not advocating that you accept AA, it is your choice of course, and for some people is does cause nausea etc, but don't dismiss it out of hand. By all means get a DEXA scan and discuss fully with doctors before you make a decision.
Sambucca won't mind me saying - not unavoidable at all: she had a total in her 30s, eventually developed GCA and was on high dose pred as a result. Her bone density was superb, never changed. She'd refused to take anything other than pred much to her doctor's concern. They've given up trying to change her now!
Know you, Celtic and Sambucca are anti AA, (all with very good reasons, and I wouldn't argue with you) because I don't think tablets should be handed out willy-nilly, just because you are on A you should be on B.
But as I said previously, and in reponse to another post, we all have to weigh up the pros and cons as individuals and make up our own minds re medication.
Exactly - no, I'm NOT anti-AA, I have no dispute with it being used when appropriate. Appropriate is NOT handing it out along with x, y and z just because you are on pred with no real background information.
First do no harm - and first you do a dexascan to see if it is likely to be needed and that should be done about 3 months after starting pred which is when the highest rate of bone density loss is thought to be. Some people will already be osteoporotic and then it is fine, they need something more than calcium and vit D. If they are osteopeneic and not borderline osteoporitic, book the recall for a follow-up scan for 18 months to 2 years and in the meantime give them calcium and vit D and appropriate lifestyle information - which is equally important.
And for goodness sake, please read the contraindications for each of the options AND ask your patient about family history. My friend was told to take AA after herself having had a gastric bleed because her GP told her to use ibuprofen for PMR. In response to her repeated refusal to take AA on those grounds the rheumy told her to take another bone protector, risendronate I think. She went home and then - luckily - checked. Contraindicated where there is a familial history of cardiac disease and personal history of DVT - both of which were clearly stated in her notes.
I don't have a problem with them being used where there is need - but with care.
Thanks for the response. I don't intend on taking meds just because they've been prescribed to me. I'm going to wait to see what the scan reveals and if they say I need AA I'll ask if there is a possible alternative.
Yes, DL, a very valid point: everyone does have to make up their own mind regarding their personal treatment. Unfortunately, most of us are not aware of the facts when different medications are put in front of us, but with Alendronic Acid and the findings that came out a few years ago, it is not a drug that should be dished out automatically just because someone is put on steroids that have the potential to cause bone loss. In an ideal world everyone being considered for AA should have a DEXA scan first of all to show the state of their bones, then if they are found to already have bone loss they may need treatment with a bisphosphonate such as AA. If their bones are normal, then AA and the like should be reserved for a later stage if and when a further DEXA reveals that the steroids are resulting in some bone thinning. The latest findings have resulted in the recommendation that it should not be taken for more than 5 years without a break, so definitely should not be taken earlier without need.
I was never prescribed AA in spite of a high 40mg starting dose. I wasn't even prescribed the recommended calcium supplement due to a misunderstanding between my rheumy and GP. I was refused a DEXA on the NHS at the time, so I sought a private scan in order to have a baseline reading. My results showed normal bone density. A couple of years down the line, a second DEXA showed slight thinning just into the osteopenia range but not needing treatment. I considered myself blessed especially as I hadn't been prescribed the recommended calcium supplement. My latest DEXA, two years after stopping steroids, has actually shown a slight improvement.
So yes you are right in saying that we do need to stress that it is an individual decision, and, hopefully, each of our personal experiences in our replies to posts will prove helpful to each individual in making their choice.
I am not anti-anything, I just think that people should never ever be given something that they do not need on the grounds that they might need it.
I, and others have always said: 'You make your own decision based on what you have discussed with your medics and being given all the pros and cons'.
What does happen, is that you are handed a prescription as a 'just in case'.
I was handed and took Calichew - as a result I developed pseudo-gout (caused by calcium crystals) and grit in the gall bladder (which has since formed stones). Why did this happen, well nobody checked my calcium levels and as it happened, pred did not make me leach calcium. If those levels had been checked it would have been found that I did not need extra calcium.
My Vit D levels where not checked, however I did develop Vit D Deficiency and needed high doses of pure Vit D to rectify the problem.
In an ideal world this would not happen, but it is not an ideal world and we need to listen, learn and ensure we do the best we can for ourselves when dealing with a long-term chronic illness.
Look at what has happened with anti-biotics. Professor Colin Garner, Chief Executive of Antibiotic Research UK wrote in the Observer this week:
'Seventy years ago Sir Alexander Fleming, the discoverer of penicillin, in his Nobel Prize acceptance speech warned that the inappropriate use of antibiotics would give rise to resistance'.
Anti-biotics have been handed out like sweeties and for illnesses that do not respond to anti-biotics and the result is what Sir Alexander Fleming predicted all those years ago.
Yes, I would take AA, if I really needed it and none of the other bio-phosonates available did not work for me.
PS: I had a bi-lateral total hysterectomy at 31. I still take 0.625mg of Premarin every day.
Simple - you have a bone scan booked, wait until after that to see if you need it at present.
If the readings are reasonable there is no point taking it until at least 2 years down the line when you need to have another dexascan and see if the readings have changed. Mine didn't budge at all over nearly 4 years, most of them on above 10mg pred. It doesn't happen to everyone and it is now being realised that AA is NOT the benign answer to hip fractures the manufacturers claimed and should be kept for when it is needed and not used "just in case"
I don't have a medical degree no but I worked in the medical science side of medicine in the NHS doing both routine work and research for a long time. My degree is in physiology and I have also studied medical biochemistry and lab sciences as well as having worked in medical marketing research for many years. My husband also worked in the NHS as a clinical scientist and I worked with him then and in a lot of his research work before and since. I've had PMR for over 10 years and have worked with one of the UK support groups for the last 6 years. You don't have to have a medical degree to read and understand textbooks and publications.
As Celtic and Sambucca have also said above - we see our role as being to present the side to the patients that they aren't shown. I have broad medical scientific knowledge, they have, like me, met many doctors in the field and even more patients. We don't present anything that isn't medically backed.
I was very interested in the three months period of greatest bone density loss, if you are going to suffer it, as it ties in with my medical history. I am on a maintenance dose of 5 mg pred. until I see the rheumy in nine months time and I want to come off ibandronic acid. I've broached the subject with two of the GP's only to get a standard "five years on it and then off" reply and even that is out of date - they now say 3/4 years. Needless to say there was no take up of my suggestion of a dexa scan so I suppose I must go private - costs about £125 which might be worth it as I shudder to think what my travel insurance might be now at age 76 with Parkinsons, underactive thyroid and B12 deficiency and my atypical PMR. I was going to see if the rheumy would consider a dexascan but my appointment has been put back to nine months time.
I wouldn't mind but nobody would know my increased rate of bone density loss (which coincided with my first taking prednisone for my symptoms) had put me into the osteopenia range had I not had access to cheap dexascans through a research project, now ceased. Looking on the bright side, keeps the old brain working all this!!
Where do you live? Both Southampton and Bristol at least do dexascans for about £55 last time I looked and I'm sure there are other places. In some places the GP can request them for patients at risk but obviously yours are being pigheaded.
It's true - they now have patients presenting with fractures after only being on AA for a couple of years. It does at least seem as if the red flags are being noted. And they are thinking laterally a bit more when a drug company comes up with their latest offering and claiming it is totally safe: you cannot possibly know what will happen over more than a few years in a large population who are taking other medications for other illnesses. Clinical trial subjects are never fully representative of the rest of the world.
Thanks for that PMR PRO. Does the £50 include the report/interpretation? The one I looked at was a n outfit that do a lot for the NHS and they also do it for private patients at certain locations, namely Milton Keynes which is under an hour from me in Northants. I pointed out to the second GP that the "this is wonderful" honeymoon phase of these kind of bone strengthening drugs seemed to be over. Both GP's reassured little old me that they had never come across jaw necrosis which I hadn't mentioned. What I'm bothered about is the spontaneous fractures. These are very strong drugs to be handing out because a person might be one of those susceptible to losing bone density. I could likewise have taken HRT fir years had I not had access to regular dexa scans. to establish I did not need it to ward off bone thinning . I want to be informed about me personally not the statistical cost/ benefit ofigures for the the nation.
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