PMRGCAuk
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Oh boy! A New Med!

Went to GP last night and general alignment meeting after seeing the rheumatologist... I asked for a copy of the letter sent by specialist to GP Surgery. Was saddened to see (right there in black and white) that I do indeed have an "auto-immune" disease and "will be on treatment with steroids for 1-2 years."

I knew this of course, but to see it in writing was a bummer.

Oh... more good news! A new medication to take! Anyone want to relay the horrors of Alendronic Acid 70mg Tablets?

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oldestnewest

Seeing thing written down does make it seem more real. I had forgotten how new you were. Still in the shock but euphoria that diagnosis means you not bonkers and pred kicking in. Then down when you realise potentially a long road ahead. Hopefully we'll be lucky and go into remission early!

Please do a search on this forum. It's an issue things up much debate. I was prescribed AA ON DX. Over the course of first 9 months or so I took it 5 times and had excruciating hip and go in pain. After getting advice from the "aunties" and others I requested a dexa scan which showed no significant issues and re commended Vit d and calcium supplement. For me alendronic acid is far worse than pred. Last week recent research suggested it's use problematic. If I could link you I would (again!). On main page there is a more button ....drop menu down and press search and put in ALENDRONIC acid or biophosphates. Lots of experiences etc.

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So sorry the diagnosis became reality. Autoimmune is a b___h! Buy really nice lounge wear to soften the blow!

The experts will be along soon to answer your questions. Don’t take drugs without proof you have osteoporosis. I have it (severe) and have taken everything known to man.

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Mamaici

Have you had a DEXA scan which shows you have osteoporosis? I wouldn't agree to take any of the bisphosphonate drugs unless I knew it was absolutely essential. As Poopadoop says, research this, so you can discuss with your doctors and make an informed decision.

I can say this, as I did have a DEXA scan, which showed I do have osteoporosis and I am taking Risedronate, which is similar to AA!

Sorry if it's in a previous post, but have you had your vitamin D level checked? If that's low, it needs topping up. In any case, AA is not effective if your vitamin D level is low, so it definitely needs checking before anyone starts AA.

A daily calcium and vitamin D supplement is recommended when we're on pred.

Others will be along, I'm sure, who are taking AA or not!

Yes, seeing things in 'black and white' really does bring it home to us. However, I keep reminding myself there are far worse diagnoses and treatments. The prediction of '1 - 2 years' could be optimistic. The condition will leave you when it decides to, however long that is. I decided I would be off steroids by this Christmas (lol), which would have been 2 years since onset of symptoms and 19 months from diagnosis. However, I flared this summer and had to go back to 10mg from 4mg and now I'm tapering very slowly. Next Christmas, maybe, but who knows - not me? The best laid plans.....!

Happier New Year to you.

Me: PMR 19 months - 7mg pred.

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Thanks All, A DEXA Scan it is... This med was suggested by the specialist and just prescribed by the GP as a "precautionary" measure. No tests were done at all!!!! I am NOT keen on taking anything I do not absolutely need!

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Absolutely do not take it without a dexa scan. I am in osteoporosis and I refused to take it. It does some very scary things I believe and research has shown. There is a book which was recommended to me called

Your Bones: How You Can Prevent Osteoporosis and Have Strong Bones for Life―Naturally

Pizzorno, Lara

which I found most helpful. Walking. light weights and some yoga and wearing a weight vest is what I am going to do instead. I don't believe my bones are necessarily brittle just because they are osteoporotic! I think balance and flexibility is key. Good luck. The plus side is the prednisone should make you feel better right away!!!! and this forum should make you feel even better!! I'm fairly new and like you NEVER dreamed I'd be in this situation. But here we are. And thank goodness we have eachother!!

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Hi yogobonnie

Agree, a very interesting read. In fact I am following the vitamin and minerals recommended in the study carried out referred to in the book. I tried AA 3 times and felt absolutely dreadful. After reading up about AA there is no way I would use it. 😵

Pete 😎

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Hi mamaici1, so sorry you have been diagnosed with PMR. A lot of doctors seem to be transfixed by Alendronic Acid with steroids. They must have read it somewhere and decided we should all have it. I am not sure how many of them have actually checked on the product. My local doctor gave a friend AA and has left her on it for thirteen years!

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I hope there's been regular scans. My sister been on it a few years but closely monitored. It seems to be a lottery as to whether you get bad side effects as with most drugs.

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They recommend five years max for taking AA. Recently there has been research which suggests this time should be reduced to as little as two years.

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I agree with all that’s been said. I also was given AA as a precautionary measure and no dexa scan. At the time I would have taken anything the GP prescribed. However after a year my body and mind have shown great reluctance to taking this poison so have decided to take a little rest from it. Feeling soooooo much better. Next thing is to tell my GP that unless I have a scan I will not resume!! Best of luck Mamaitic.

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Hi mamaici1,

As previously said, 1-2 years may be optimistic- 2 years minimum, maybe more is more realistic.

As others have said check if you actually need AA, some do, most don’t!

I did need it, and took it for 4 years with no problem whatsoever, but it doesn’t agree with everybody, and why take another pill if it’s not required?

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Hi DorsetLady

I definitely did not need it, but my Rheumy ignored my protests and prescribed it anyway. ( I think the book says everyone on Pred must have it!) It made me ache all over as well as the PMR ache so I have told my GP (but not the Rheumy!) I'm not taking any more. Good decision!

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Have you had a dexascan? Do you REALLY need AA?

At the top right corner you will see a box with Search PMRGCAuk - type alendronic acid into that and a few thousand threads will appear as if by magic. Read to your heart's content - or otherwise.

I have been on pred for over 8 years, I took 4 AA tablets before doing my homework and discussing it with a different GP who agreed that it was beginning to be questioned as to whether blanket "just in case" was a good thing. My dexascan was fine, very mild osteopenia, and so I took no more, just calcium and vit D supplements, and in over 7 years my bone density had barely changed, it is still very mild osteopenia.

And now questions really are being asked about using AA for more than a couple of years - so why take it if you don't need it - you may never need it like me.

PS - if you have to have an autoimmune disorder PMR is a pretty innocuous one to have. It may be a pain in the anatomy in every way - but it doesn't kill or main (like RA) and for 75% of patients it has gone away in about 6 years. Only 5% of us have to deal with it for life - but by then you have learned to live pretty well with it and some of the problems would have appeared with advancing age anyway.

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Perfect!

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I was prescribed Fosamax. It messed with my stomach. At the advice of others, I asked for the results of my Dexa scan. I don’t have osteoporosis. Discussed a more natural preventative measure (COMB protocol) with doc and he agreed. Lots of discussions here on this topic.

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Many GP'S and Rheumy's automatically prescribe AA. Mine did, but both Mum and sister had / have Osteoporosis, took AA and had to come off it. I had had DX scan every two years for past 6 years. Very slight difference in Oesetopena status since taking pred when compared with previous tests, so am sticking to my guns at present politely refusing AA. Strongly advise insisting on DX scan so that you are better placed to make an informed decision. Best wishes.

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I was worried about some of the things I'd read about it so also Insisted that I have a dexa scan - a bone scan, that shows the amount of calcium in your bones, My Gp was very surprised when I was told there was no need for the alendronic acid however I've had such severe problems with the polymyalgia that I'm wondering if it would have been better to accept the AA. I've asked for another dexa scan but apparently its too soon to have it done, and being a sceptical sort of person I checked this out with a radiologist, and as I had it done in May they definitely won't do it. So I'd say press for a quck appointment for the scan and see what happens. Another Gp to my own practice has said he wouldn't hesitate taking AA if told he needed it and there are various ways to take it. I believe one way if to receive it once a month from the pharmacist or GP and it's bettee digested. if you take it yourself in tablet form then You have to stand or sit upright for so long afterwards. Plus some people only need Calcium tablets. So do the research ask around to see if you know anyone else who needed or didn't need them and if you know other medical professionals than your own GP or Consultant speak to them.

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My dentist is horrified by the side effects of AA and said definitely do not take it. And my doctor also said he would take it when he suggested I take it but I think he is being swayed by this group. But he never ordered it without the scan first.! I think just giving such a strong drug willy nilly without cause is practically malpractice.

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The COMB mentioned by Insight329 is a study done which showed that micronutrients and exercise can be as effective as drugs in improving bone density - with the added benefit of over all improved health and no side effects.

hindawi.com/journals/jeph/2...

You wouldn't have to follow exactly what the researchers did (I didn't) but take on board the fact that there are some micronutrients we need more of, like D of course, but also Vitamin K2, and a handful of other minerals besides calcium. The K2 may need to be supplemented, like D is, as we don't get much in the modern Western diet, but most other things can be got from a well balanced diet. I do, in fact, take a special strong bones supplement which has calcium hydroxyapatite (supposed to be better absorbed by people on pred) as well as extra Vitamin K2, Exercise I've added to what I used to do includes Nordic walking (upper body strength) and Tai chi (sense of balance, flexibility, strengthening muscles).

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The shock of the diagnosis and the long road ahead on tablets for me has been the hardest. I was expecting my doctor to say you have a virus and it will go away. At 56 and with no other health problems I’m now a card carrying steroid user 😔. Hope you keep well. I’ve found the advice and support on this forum invaluable.

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YES! That is exactly what I thought! Even though GP was sure it was PMR & GCA, I fully expected the rheumatologist to say exactly that, "It's a virus." I'm 63 (before this I felt 40!, but not anymore!) and I now carry a steroid card and if I don't take a nap, I'm quite CRANKY!!! WTF? You're 100% correct the advice and support on this site has been INVALUABLE. So glad I found it. I hope you keep well too.

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It must be a shock but at least you know what you are dealing with. Electronic Acid was TERRIBLE for me. I was violently sick all day, chronic diarrhoea, the mother of all migraines and lost 4 days in nausea, pain behind my eyes and loss of appetite. Apart from all that I was fine! Some people are ok with AA but it seems that just as many are not. You won't know till you try. Wishing you luck. Dee

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Predictive text strikes again - but I love it: electronic acid!!!!!

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I forgot to mention prunes when talking about bone health. They give them to astronauts to help their bone density when weightless. Studies have been done on women that have shown an improvement in bone density when eating prunes every day. I and others on the forum take 5 prunes a day - in my porridge, or however you like them!

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off to the store for Prunes!!! doesn't that Scottish Cakaleekee sp? soup have prunes???

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Yogabonnie

I don't think that traditional Cockaleekie soup has prunes in it, but some 'chefs' do put them in - whatever tickles your palate! I prefer them in my porridge or with custard - not a fan of fruit with savoury foods. Moroccan tagines have dried fruit too.

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It isn't something I'd ever come across BUT:

"Cock-a-leekie soup is a Scottish soup dish consisting of leeks and peppered chicken stock, often thickened with rice, or sometimes barley. The original recipe added prunes during cooking, and traditionalists still garnish with a julienne of prunes."

It's an all in one dish - so covers pudding as well it seems!!!!

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eeew

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Prunes = great. Prunes in cock-a leekie - what??? Very odd.

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Wiki says so - so it MUST be true ;-)

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Remember Vitamin K2 is a must to take beside Calcium and Vitamin D.

The K2 is the one that incorporates the Calcium and Vitamin D good effects on bone building.

Missing K2, Calcium deposits in the arteries , kidneys (stones), .etc.

Take Vitamin D+Calcium+K2 Vitamin together.

Avoid the Alendronic Acid, in order to avoid bone necrosis It prevents the old bone to break down, and you and up with old bone with less new bone, Old bone is more brittle, not stronger! Bone formation is a balance of old bone removing cells and new bone building cells

Also exercise with weights as much as you can. Walking is the most doable weight baring exercise, but you need extra weights for your arms, abdomen etc.

Have a great start in the New Year!

Lets remember how positive and strong we can be.

Lets demand the best of ourselves

It is our time

2018 Here we come

My wish for everybody is a healthy, happy, New Year!

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After a dexa scan I was diagnosed with severe osteoporosis. Put on AA , plus vit D3 (?) tablets and did try to increase my consumption of dairy products - too late, I guess. After a second scan I was put on 6monthly injections of Prolia .

Has anyone got any experience/results of that? I've had two falls at home recently and the first thing I dread is a breakage! Quick check has thankfully pointed to none.

Next biggest prob. is getting upright again! After 6.5 years on Pred. muscle wastage, no easy task. It took about 15 minutes each time but I did it!

My newly-cleaned furniture is blood smeared because I 'skinned' my forearm in the fall but 'tomorrow is another day'. I'll deal with it then

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Tomorrow IS another day.... hang in there.

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