Re outcome from my last post ' a tablet too far ' - PMRGCAuk

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Re outcome from my last post ' a tablet too far '

Jud666
Jud666

I have just come from a consultation with my rheumatologist, amongst other things i asked about the dreaded weekly Alendronic Acid tablet my doctor insisted i took. She checked my dexa scan results, which i knew were normal, and my family history and eureka !!!! "There is no need for you to be taking this tablet". If it hadn't been for attending my first support group meeting last week i wouldn't have known to ask. Thank you Ilkley group. Happy easter everyone.

23 Replies
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This is good to know AA cannot be taken lightly. I was asked by a GP if I would like to end up in a wheelchair when I refused it. My DEXA scan showed and I quote “ the bones of a 30 year old”. Glad I stood my ground. That is not to say that many may benefit hugely from it with no adverse effects. I just wish it wasn’t pushed so hard. Not everyone needs it.

Yes Jane, I was subjected to similar 'Constructive Discomfort' (scare / guilt) tactics from a temporary GP too, around the consequences of not taking AA in conjunction with the Preds, but with no reference point on which to make an informed recommendation - and no acknowledgement of my previous fitness and lack of any fractures / family history overall.

On my insistence for a DXA scan to establish a baseline risk-wise, the results came back as 'borderline Osteopenic / relatively minor fracture risk in the next 10 years compared with my age adjusted peer group'. After further research I also learned that, for some people, relatively low bone mineral density is the norm. And so I felt much better about NOT being pressured to take the AA, with all its pro's and con's.

I'm not for or against AA ('Context is All') - but these types of patient stories make me wonder how often it is arbitrarily prescribed by medics one a 'one size fits all' basis. I guess they would argue 'Better Safe than Sorry'? But, of course, they don't have to live with the consequences for the patient of getting it wrong either way in the long term.

Mmm.. food for thought, and more power to PMRGCA / local groups' shared knowledge and experiences of these complex issues.

MB :-)

Greetings Jud, sounds like a positive result and it's nice to hear stories about medics (e.g. your Rheumy) exercising their professional judgement in context. Well done to your local support group too! :-)

Best wishes

'Uncle' MB

Hi Jud,

I'm pleased to hear that our 'lively' discussion around bone health has been of use to you.

Happy Easter to you too.

Good result!!

Doctors that follow the "functional" approach would rather prescribe Estrogen for bone protection than AA, for post menopausal women. I would choose Estrogen... at least it makes you feel better all around.

yogabonnie
yogabonnie in reply to Gaijin

This is interesting. I never thought about estrogen. I have heard a great deal of negative things about taking estrogen after menopause...but hadn't heard it might help with bone loss. I am in osteoporosis and have and will continue to refuse AA because I really believe it is not good.. and one can only take it 3 years.. so what to do when I'm 75?. but estrogen. Oh I would LOVE to feel like that again!!! anyone else have thought around this?

Jud666
Jud666 in reply to yogabonnie

Hi

I remember my stroke specialist back in 2004 telling me i must not go anywhere near HRT for the menopause as i had just had a TIA ( mini stroke) Anyway he said you're i big girl with plenty of bone !!! I may well be wrong but i understood Estrogen was the basis of HRT.

Hi Yogabonnie

Agree w Gaijin - oestrogen is preferable to AA for bone protection in post-menopausal women.

I've gone back to something like HRT for that very reason. (Am 71.) OH (endocrinologist) thought it might be a good idea under the circumstances. I'd been taking it (not standard HRT but a variation more suited to my physiology) since menopause, but stopped on diagnosis of GCA (Nov '16) - too much medication. However, long story short + relying on food sources of calcium (don't tolerate calcium supplements) decided to go back to taking it. It has no magical effect on how I feel, but no adverse effects either, and I'm buoyed by the thought that it'll be helping to protect my bones. That + vitamin D. That was the main reason I started taking it in the first place.

We think the negative aspects of HRT tend to be a little exaggerated, and the benefits should be weighed in the balance. Especially if considering AA and the like. Consider family history, amount of extra oestrogen taken over lifetime + other relevant factors - need to balance pros against cons. This is the way my equation came out. Worth thinking about.

PS: Am not considering stopping it any time soon! My mother had total hysterectomy at an earlyish age, and was on HRT indefinitely thereafter - certainly past her 70s. She's had many things wrong with her, but nothing wrong w her bones. Skeleton like a rock, no heart problems and no strokes. And, amazingly, is still alive.

I too was prescribed AA automatically at PMR diagnosis back in March 2016. Took it dutifully, not questioning anything at that time. Few months later after finding this forum and all the advice I told my GP I was stopping it. He didn’t argue and I suggested a dexa scan. Waiting list here in Edinburgh was 48 weeks!! Got one within a month as his referral letter said I was post menopausal 56yr old on steroids and not taking bone protection. Clearly set off alarm bells so lucky me I was prioritised. Turned out the dexa showed all was well and I was very low risk. Recommended I did NOT take AA. However GP surgery never contacted me with the info until I chased several weeks later.

I’m glad I made my own decision and it proved to be right. Never liked the automatic prescription of extra drugs because I was on prednisolone.

Now I need to work out how to get onto the dexa scan waiting list again as it’ll be two years in the autumn so needs to be updated. Will pursue my GP again! Poor man.

Jud666
Jud666 in reply to Lochy

Hi Lochy

You are so right, it's such a shame we have to try to help ourselves, and cannot rely on the professionals all the time. But i suppose we should be grateful they are there !!

Lochy
Lochy in reply to Jud666

Exactly Jud666! My GP is a lovely man and we do get on very well although I do think he sometimes must see my name on his list and know immediately his schedule has gone to pot 😂😂 At least he listens to my theories and despairs with me how little support we get from rheumatology. I suppose a lot is just luck if you have a rheumatologist in your area who has an interest and knowledge of PMR.

Hi Jud, I was also at the Ilkley meeting. I think we got a lot of useful information. I am seeing my GP on Wednesday and hoping to come off Alendric Acid. I have had a 5 year course of this 2010 to 2015 while taking Letrozole for breast cancer. I was prescribed AA again in Dec.2016 after starting on prednisolone for polymyalgia. My last dexa scan showed osteopnenia so I am not sure what the outcome will be. This is my first post, but I am finding the chat really helpful.

mngirl
mngirl in reply to Mave15

Hi when my doctor prescribed AA she told me the protection lasts beyond the 5 years you are supposed to take it. I have taken it for a year. With all that I have learned from the forum I intend to discuss it at my next dr visit. If I remember correctly she said they really don’t know how long beyond 5years after you stop taking it the protection lasts. I believe you should still have years of protection from your first 5 years that you took it

Jud666
Jud666 in reply to mngirl

good morning

That is very interesting, You don't mention if you were diagnosed with osteoporosis, that would make a big difference. I had a normal dexa scan with no family history. I have also been lead to believe the side effects of AA also continue long after the tablet is discontinued. Good luck with your Doc.

mngirl
mngirl in reply to Jud666

Only osteopenia. I hope my dr is open to the suggestion. I intend to go armed with all I can find. Thankful for the information I get from the forum. I really appreciate it.

PMRpro
PMRproAmbassador in reply to mngirl

The presence of the stuff in the body lasts for life - it is trapped in the bones. But whether that also retains the claimed protection against fractures is another matter because, as I understood it, it stops working to attract calcium once it is incorporated into bone, that's why you have to keep taking it. And there is also dispute as to whether denser bone also equals bone that is less likely to fracture

Mave15
Mave15 in reply to mngirl

Hi mngirl, Thanks for your reply. That seems quite positive. I am off the AA for the moment and have,this morning, received a dexa scan appointment for 16th May. So I hope that shows good results.

Good morning Mave

I wish you luck with your GP i hope he is understanding and explains him or herself well. I hope the outcome whatever it is makes you feel comfortable. Like you after months of PMR it's great to find support from here and from our local group.

Hi Jud,

I saw my GP last week and I am having a break from AA for the moment. I am to have a dexa scan and if this shows osteoporosis she wants me to return to taking AA, but if it shows osteopenia I can stop!! I don't know what the waiting list is for the scan so I shall have to be patient. She also agreed to me going on a tapering regime from 4mg to 3mg. I have had 2 months on 3mg but had to go back to 5mg because the beast returned. So that was 2months on 5mg followed be 2 months on 4 mg. Not tried tapering before, this a 38day plan, so hoping this is successful!!

Jud666
Jud666 in reply to Mave15

Good morning Mave

You read my mind !! I was just wondering yesterday how you had got on with GP. It sounds as if you both had a really good conversation. I didn't have to wait long at all for my dexa scan, my local hospital is Airedale General. I too have had to go back to 4mg it's amazing the difference 1mg can make. Looking forward to meeting up again before too long. Jud

Hi Jud, received my dexa scan appointment this morning for the 16th May at the LGI . Strangely enough the letter was addressed as coming from Wharfedale Hospital, so I was pleased the appointment was for Leeds. As much as I love Otley it is a long way to go from Garforth for a scan!! Hope all is well with you. I had a couple of hours in the garden yesterday, so taking it a little easier today. M.

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