Hi Everyone, I was so tired this moring I was sorely tempted to cancel my drs. appt. Anyway, it was to see how I was getting on with A Acid, which I haven't taken. So that was the so called "new medication". I didn't get off to a good start this morning, I was so tired but I pushed through it and drove to drs. My appt was 10am but they didn't have me on the system at all for appt. Then I had to wait ages and ages, then after an hour I was called by the locum dr. The so called new medication was to see how I getting on with A Acid and then I informed her that I wasn't taking it and the reason why. She told me the pros and cons and that there were 3 ways to take it. The weekly one, or a daily one or a yearly one through a drip (that may not be right, as I was too tired to listen) She was nice enough and told me that the steroids would definitely lead to osteoperosis even if a dexa scan was taken and bone density was normal, because of the long term use as well as the high dose. I told her I would considerate it sometime when my dental work was finished.
It's either take the AA to prevent loss of bone or don't take it and let PMR damage the muscles (I think) I was just too tired to care about what she was saying. She gave me two websites to look up - this being one of them and another electronic medicines compendium (PIL) Patient information leaflet. Just thought I would keep you all in the loop about the new medication which is not new. Is anyone on this AA? What is the dosage? Also woke up with a red dot in my left eye. She said it was subduc (I cannot think straight) Sorry to disappoint anyone about the not so new AA. Any comments welcome and thanks in advance.
Pat like you I refused to continue taking AA after about 2 months ito starting preds as I felt so bad on the day I took it. Have improved but had a word with my GP insisting it was not worth the hassle as I had not had a Dexascan as a ref. You can only take AA for up to 5 years!
Hi John, I have never taken it, even though consultant rheumy prescribed it. I didn't know you can only take it for up to 5 years. Thanks for the info. Pat
Pat, she's so wrong. I took steroids for five and a half years, starting at 40mg. Not only did I not take anything along the lines of Alendronic Acid, I wasn't even prescribed calcium or Vit D. My privately arranged DEXA at the outset showed normal bone density, and a couple of years later a repeat DEXA showed a tiny deterioration just into the osteopenia range (the stage before osteoporosis), but not needing any treatment. Now 3 years since reaching remission from PMR and GCA, and zero Pred, my latest DEXA has actually shown a small improvement.
My advice would be to walk every day without fail, even if you can only manage 10 minutes. Even at my worst, I didn't fail to have my daily walk, sometimes having to stop and sit on a wall for a few minutes to recover for the return journey home. It is one of the best weight-bearing exercises you can do to help your bones.
Also, including plenty of oily fish in your diet for its Omega 3 will help you bones.
The red dot in your eye: subcongunctival haemorrrhage (burst blood vessel) - probably due to the steroids thinning the blood but absolutely nothing to worry about.
Still insist on having that DEXA scan some time though.
Hi Pat, what a wasted appointment.
I was prescribed AA by a locum at my old GP surgery when he read that I had PMR. I dutifully took it every Sunday prior to church. I never experienced any side effects and was very happy taking it until I came across a discussion on it on this site. I immediately got on line and looked up the drug and its side effects. I have never been offered a scan and I am now 54 (52 when diagnosed). I am very precious about my teeth and it was the information about the jaw bone disintegrating that scared me witless.
Patients that have or are receiving medication for cancer are at the most risk if they take AA and the problems can be especially bad if you are taking the AA yearly by intravenous. As oregonjohn says these drugs can only be used for a maximum of 5 years because at that stage they actually have the opposite effect for what they were intended for and begin to crumble the bones.
following the decision on the subject I asked my rheumatologist if I could stop taking them and he was only too happy to oblige saying that he only prescribes AA to his patients that are over 75.
AA takes about a year to actually have any effect, but once the drug is taken what you have taken will stay in your body for an estimated 10 years, please someone out there please correct me if that's wrong. My rheumatologist has advised me to always tell my dentist that I took the drug and for how long because of the possible side effect of the jaw bone disintegration which could pose a problem if you are having a tooth extraction.
but I say, if it is proved via a scan etc that I require the drug then I would take it, but yo have been prescribed it willy nilly has really annoyed me.
good luck Pat, regards, christina
I also was prescribed it shortly after starting preds, and used to take it every Wednesday at the sametime, but when a post came up on this forum last year about side effect, which I also had, I decided to stop and speak to my GP. He was not that happy with me stopping but understood my concerns. The drug hangs around in your body for a long time and can build up over a 5 year period so it's not recomended to take any longer. In my case I don't really want to start unless I have a dexascan to confirn I need AA. I'm down to a low dose of preds - 7.5 mg and as it gets lower this side effect of osteoperosis is reduced and I hope will never be there!!
Hi pat,
i take AA ,I was diagnosed with osteoporosis in right femur and osteopenia in left femur ,before I was diagnosed with PMR,so I take it as do not want to,fall and break hip etc. not happy taking it but as pred can cause osteoporosis decided I should. Definitely not new drug a friend has taken it for 5 years,she now has injections as was told 5 years is max time one should take it.
she has very bad oesteoporosis ,can break a bone very easily.
hope this helps
Jenny
Hi
I had GCA for 5 years, now in 4th year of remission.
Six months into GCA - Rheumy ordered Dexa Scan - result Bone Density normal.
Two years down the line - another Dexa Scan - bone density, no change.
Five years - after finishing pred - Dexa Scan - bone density no change.
It does not have to be AA, there are other meds available. Visit the National Osteoporosis site and look them up.
You can also look up the side effects of AA.
Then make your own mind up which route you want to take.
PS: A Dexa Scan takes about 20 minutes and the approx cost to the NHS is between £20 to £25.
" She was nice enough and told me that the steroids would definitely lead to osteoperosis even if a dexa scan was taken and bone density was normal, because of the long term use as well as the high dose."
Well really? Lodger, MrsO and I are all longterm users of pred at over 10mg/day, they had far higher for much longer than me. None of us has osteoporosis and none of us has taken AA. My dexascan had not changed enough after nearly 4 years of pred to make any of my doctors say I needed more than calcium and vit D. I'll consider taking it if they show me I need it - then and only then.
AA won't do owt to your muscles - it may increase the bone density but whether that will stop you having a broken bone is another question. It shouldn't be taken for more than 5 years at a go - so you get a dexascan reading as a baseline and then decide what to do. if you aren't osteoporitic you take calcium and vit D and repeat the scan after 2 or 3 years. Rinse and repeat.
Christina - "it's there after 10 years" - the figure of 10 years is because that is how long they have monitored it for. A similar drug has been used for some 50 years for patients with other bone diseases but AA has only been licensed for use in the general population for about 15 years (1999) and hasn't been used even as long as that for very large populations. The risks associated with its use have been emerging in the last 7 or 8 years - and the FDA have been adding warnings about its use at intervals. The likelihood is that as time goes on the time it remains in your body will simply increase as they have the evidence.
One lady on another forum told us she was asked by her orthopaedic specialist why she was taking AA - she told him it is handed out like sweeties if you are on pred. He just rolled his eyes.
I will take it if a dexascan shows I need it - then and only then. If I don't need it I won't take it "just in case" and because a drug company did a very clever marketing campaign and convinced a lot of doctors it was a wonder-drug that would prevent broken hips and had no side effects. It does have side effects, some are quite nasty and dentists are very wary of working on patients who have been on it.
Pat, If it were me I would stick to my guns and say you do not wish to take any drug unless it has been found that your body needs it. SO - DEXA SCANF FIRST to see what your bones are like. This sounds obvious but GPs now tend to use bone meds. as a preventative measure - the GP "rule of thumbt" is - if a patient is on a Pred. dose of 5mg. or greater for more than 3 months, they are AT RISK of developing OP (most bone damage done in the first 3 months) or if they already have OP and do not know it (as 50% of women do), their bones will deteriorate further in this time. So we're back to the scan again, if it's normal I wouldn't take a med. as a preventative treatment but I would take a Calcium and Vit. D supplement if I was not getting 1200mg Calcium daily in my diet. And repeat the scan in 2 years - to be sure. If you have diagnosed OP I would take a medication for it and there's lots available with different frequency of administration - daily, weekly, monthly, 6-monthly or yearly. Something will suit. Don't go down the route of worrying about side-effects 'til you find if you even need to take it . . . Keep in touch.
Sounds really worrying. I have been prescribed Risdronate taken once a week. And calceos tablets taken twice a day. Your note above has made me question what I am actually taking, will ring my Dr and discuss with her.
I drink plenty of milk, make my own yogurts and eat dairy products, I have never had problems with my bones, never broken any. Eileen what do you think?
Dexascan first - do you have low bone density? Then you weigh up the situation against the options. But I don't care what they offer as "bone protection" other than calcium and vit D: you shouldn't take them until they are necessary. Only about half of patients on prednisolone develop osteoporosis - so there is no good reason for 100% of patients on pred to take anyhting more than calcium and vit D.
Polypharmacy (being given multiple drugs) is associated with all sorts of problems - avoiding taking unnecessary medications is a good start to avoiding all sorts of problems. Yes, if you are SHOWN to need risendronate (or whatever) that is fine. Otherwise, calcium and vit D are enough for many of us to avoid osteoporosis.
PROOF first - then discuss the options.
Just a small point as an addendum to Eileen's. I you drink plenty of milk, make your own yoghurrs etc, you may be getting very adequate calcium and may only need a Vit D supplement. I say this because you can overdo the calcium and more is not necessarily better at all. You need 1,200mg daily if you are female >50yrs. and it's better to get it from diet but, if not, supplements are fine. You can check out various charts online ( " Am I gettting enough calcium?"
and various foods are listed along their calcium amounts and you can check what your intake is.. . Now stop worrying . . . we all do - and it never helps! Kind regards.
Thanks for advice and thoughts. Regards to all for your input.
Hi Juno, you are quite right, I was taking a calcium, magnesium and vit d supplement up until 4 weeks ago. My last blood test revealed that my calcium level was a little on the high side so my GP suggested I stayed off the calcium (continue with the magnesium and vit d) for a while, at least until my next blood test. Regards, christina
I ran into problems after taking Calichew. Pseudo-gout in knee -caused by calcium crystals. Calcium grit in gall bladder. Calcium dropped quickly and never took it again. I had always eaten pure dairy products ie butter unprocessed cheese etc. Now lack Vit D was a whole different ball game.
I suggest you all read this link https://patient.info/health/vitamin-d-deficiency-including-osteomalacia-and-rickets-leaflet
Particularly this para: What are the symptoms of vitamin D deficiency?
I starteed with aches and pains and knew it could not be PMR as I was on a high dose of pred for GCA (I never had PMR). Luckily I was listening to a GP on Radion 4 and he was talking about the rise of Rickets in the UK and Vit D Deficiency. I came to this site, read up on it and off to GP - asked for Vit D deficiency test (and this should be done for everyone before they are diagnosed with PMR as the aches and pains are exactly the same). Lo and behold, on the scale used by my hospital trust anything lower than 140 was deficient, I came in at 43.
40,000 units of Dekristol per day for 10 days, followed by a blood test, still not up to scratch, so 20,000 units per day for 5 days - blood test up to scratch. Since then I take 1,000 units per day as that is the recommended maintenance dose.
Have GCA and osteoporosis in my spine.
Have been on AA for a couple of years now and knock on wood am not suffering any side effects.
Mrs. O. made some good remarks about the great helpfulness of walking, to combat many physical problems. She is absolutely right.
However, I am one of (I'm sure) many who have serious spinal conditions with accompanying pain which prevent any walking at all, beyond the bare minimum.
Accordingly, I try to do some careful calisthenics most days, but I cannot take walks. I think I'm not alone in wishing for some good instruction re non-walking exercises for people over 75. Ideas?
Barbara, I, too, have a spinal problem (spondylolisthesis) but whereas I can manage a good half hour walk, I don't think my spine would ever allow me to take part in calisthenics. It seems that my daily walk helps to keep my spine in check.
Another exercise is Nordic walking - I'm wondering whether the walking with poles would help your spine.
I also recommend a Tai Chi class - you can always then sit down between movements if your back starts to trouble you.
If you're looking for exercise other than walking, how about swimming? One of my orthopaedic consultants told me that the best exercise I could do was to swim but only on my back. Unfortunately, it won't offer any bone protection as it isn't weight-bearing, but it's still a very good form of exercise.
You're certainly right about swimming, Mrs. O. I went to a lovely indoor pool two or three times a week for a few years and loved it. Eventually, I stopped, finding that the dressing, undressing, driving there, etc., were all too much for somebody now in her mid-80's.
I am very careful about the calisthenics and find that if I skip two days, my body objects. On his way out the door after my PMR appointment, the rheumatologist told me emphatically, "Whatever you do, you must exercise." And so I do, and so far, knock on wood, my slow reduction in pred causes no pains whatever.