I had a GP app this am to review HRT ( for recurrent UTIs). While there, she said I should be taking Alondronic Acid. That Calcium/ vit D was no protection on its own for bone density. Concudering I was on Prednisolone all last year for PMR, and saw Rheumatologist at least 3 times, I was pretty shocked. I am now on 2 nd week of 9 mg Pred. I read the enclosed leaflet on Alendronic Acid and it looks a pretty toxic drug! . Had Dexa scan a year ago, and was fine. Are you all taking Alendronic Acid?
Alendronic Acid: I had a GP app this am to review... - PMRGCAuk
Alendronic Acid
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Breconblue
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•
No not at all and nor would I if my Dexa Scan was fine my two in a row ( 2 yrs apart) were fine.
Thank you! Any idea how often a Dexa Scan should be repeated?
• in reply toBreconblue
When you have the Scan they tell you when it’s to be repeated. Sooner if any issues, longer if normal.
I was told 2 years apart.
Some doctors say 2 years, some say once a year. Depends where you live.
I was told I would need AA, but after seeing my scan, and some good advice from this forum I refused..
My doctor actually agreed with me.
My last two dexa scan hardly changed, and that was enough for me to decline it.
My Consultant arranged a Dexa Scan one after six months, then every two years. I had GCA and it took me the first year to get to 20mg after a couple of hiccups.
5 years down the line, remission, bones still fine and no change from 1st scan 97%.
Talk about over prescribing...............and it always is AA grrrrr
If my dexa was fine I wouldn't take AA, it was and I haven't. It was recommended I have another in 18 to 24mths. I have had the second one and no change re osteoporosis/penia...all within " normal" range. They recommended I came off calcium supplements. I am entering 4th year and at 6mg of pred. I will actually still take adcal as I don't eat much dairy at the moment. You need to ask for your t scores so you can make decision based on information. But if no osteoporosis no AA for me.
Don't take AA if you don't need to - if your bone density is ok, you don't need it.
My dexa scan showed low bone density so I was told to take AA; but my next scan isn't for 5 years - there's no way I'd take AA for 5 consecutive years!
There is a HUGE difference between taking things like supplements to " top up" your nutrient base as a preventative measure to various conditions and taking a drug like AA .
AA , PPIs and Statins are not drugs to take " just in case " in my book , especially when your body is already having to cope with the job of processing drugs like Steroids and repairing itself.
If you have a normal Dexascan , or don't have pre existing issues for other side effects like stomach trouble or Cholesterol that you have not been able to reduce by natural means , I think you should be given the right help and information to try and maintain your bone , heart and digestive health by natural means first.
You only need to look at the history of members like the Mighty Heron on this forum to see that if given the chance,, and the right tips , you can improve your bone health , osteoarthritis issues and scan results by the right changes in lifestyle , diet and appropriate types of exercise.
Prevention is better than cure , but it doesn't have to come on a prescription.
• in reply toBlearyeyed
Apparently you are twice as likely to develop type 2 diabetes if you are on statins. Just read it so it was on my mind. 🤣🤣🤣
Blearyeyed• in reply to
I know , it makes me fume , as it isn't great to use with Type 1 long term either as it can make regulating your diet more complex , yet the GP is constantly trying to force it on my OH , to the point that he gives up and just accepts the prescription then puts it in the bin.
It's this sort of inappropriate prescribing and unwillingness to accept the patients choice that must be making a huge dent in their budgets.
I know so many people with long term health issues whom feel forced to do the same rather than waste valuable energy and time on having the same old battle on the same thing each time they have an appointment .
It is also an issue when you have certain drugs that you know you need , maybe three times a year, and are on your repeat prescription but need to be ordered each three months (even when you don't need them) so that they don't get removed from your repeat list , then force you to have to try and get them on again with a new doc.
If they wasted less money on " just in case" medicines they may actually be able to afford the better pharmaceutical treatments for many illnesses without forcing you to jump through as many hoops to access them.
• in reply toBlearyeyed
I finally managed to get the drs "blessing" to dump the statin. 2 months or so after I had done it. It's the fact that there is a difference in its relevance to women and men too. Dr admitted she wouldn't take one....17yrs after I had been out in it by the practice.
My OH was told and prescribed statins he refused, but still had them prescribed.
He never took them and at his last check up was told what a fit man for his age 75 he was, the nurse said all his test results were brilliant.
We have a good diet and he drinks like a fish,
My OH too - drinks far more than he ought but his cholesterol is enviable!
3.2 is my OH, not had mine checked, so maybe will ask next time i see the nurse.
My GP keeps saying I should take Alendronic Acid as I have been on steroids for a while. We then have a row about it which I always think I have won, until the next time he brings it up. My Dexascan is extremely good I keep telling him, but he seems obsessed with steroids causing problems.
• in reply topiglette
I was just wondering if drs gave up pestering people once their dexa was ok..... apparently not! Neither the rheumy or Dr have mentioned it since my first scan was ok.
piglette• in reply to
Mine seems to have got an obsession with Alendronic Acid, perhaps he has a second job with Merck! I have always had a really good Dexascan result.
• in reply topiglette
Well he is just a plonker then. Sometimes I wish I could make them take all the drugs and then decide which should be kept on my prescription. I suspect the ones that offer day to day pain relief, sleep and a good quality of life might come out top. Future me can take care of all the stuff in the future. I have done everything I can to help it along re bone health.
piglette• in reply to
It was not as bad as when he said I had one hundred per cent movement in my hip and refused an X-ray, I went privately and the orthopaedic surgeon said I had 5% movement and needed a new hip as soon as possible. The GP did not bother to read the letter from the orthopod. I phoned the GP and had a go at him for misdiagnosis, he said why was I complaining as I had my answer now. I said it had cost me a lot of money, he said he was free! I replied no he wasn’t as a U.K. taxpayer I was helping to pay over one hundred million pounds for him and the NHS. As you say - plonker.
• in reply topiglette
Omg. That's terrible!!!
It's the sort of responses I expect with some of our practice gp's. I now have a list called 'dont see unless dying".!!
I think it should be don't see unless dead! Mind you I am not sure they can diagnose that.
You should be right. The gp at the top of my list insisted that my shoulder was perfectly sound and didmt need any more ops but he would refer me just to prove him self right!! My consultant decided within 2 mins of being in his office that the shoulder was finally, after 8 previous surgeries beyond repair and I had a full depth rotator cuff tear as well and he replaced it two months later!! gp response wasn't must have happened after he saw me!!!
I wouldn't even let some of my GPS do an autopsy on me !
Perhaps I would let them chop up some carrots , but not choose the way to cook them.
😂😂😂
Suffererc• in reply to
Drs dont know how to talk to folks they just hide behind prescriptions
After reading the advice here I requested a bone scan...though it was on the 12th June...and result haven't come in yet...is this a normal time to wait?
Had a scan today ,first after 2.5 years on pred , as doc asked why I’d not been taking aa , we agreed I’ll take them if needed and forgot them otherwise. Fingers crossed . Told 2 weeks at the hospital for results
• in reply toDaisyfield
I think mine was 4 to 6 weeks...prob to give Dr a chance to get to it... eventually. I always ask to be sent a copy of hospital communications.
Daisyfield• in reply to
thanks...should get it soon thanks.
• in reply toDaisyfield
Ring the surgery and ask if results in and if they are ask for Dr to call you back or get an appt. In my surgery if no further action required by them via prescription etc. They don't even bother to contact me.
I was given my results straight away by the person who did the scan. She even showed me the chart. This was on the NHS but at a private hospital.
That's quick...it's so different everywhere...I can't understand why it's taking so long. but GP said to ring next week if they haven't come and they'll chase up.
I was prescribed AA along with my first prescription of pred! After advice on here and reading about it I didnt take it. When I asked if I could have a dexa scan a few weeks ago I was refused on the basis "pred doesnt damage bones" the doctor followed with I need to take AA to protect my bones from pred! When a gp can come out with such garbage in two sentences I dont feel confident about taking their advice. I still dont take it!!
You've got to laugh, haven't you?😂😂😂
Either that or sit sobbing somewhere!! The last time I called this particular gp out on his uselessness the senior partner threatened me with being removed from their list!! If it wasnt for having to go through my medical history with a new practice I would have told her where to go!! I get my enjoyment now from talking about bowel movements in the reception area when asked why I want to see a gp sometime this month!! Bowels have nothing to do with why I want to see gp but as i use my court voice it guarantees I get my appt!!
Hi, have you had a vitamin D test? It is always a good idea to know if you are deficient and easy to remedy.
Also, check out the Bone Health forum on Healthunlocked, it has some good info too.
Read about it and refused it
No we aren't all taking AA, or, for that matter, any other bone pharmaceutical. 😎
Hi Breconblue, i've had PMR since Oct 2017. In June this year via A&E visit diagnosed with GCA, so pred increased starting at 50mg, and was also prescribed AA. After 2 weeks I had seriously upset stomach with severe pain, I phoned my GP who said to stop AA, rheumie also agreed at subsequent appointment, I had a tooth extraction beginning of July, dentist was happy to go ahead because I'd only taken for 2 weeks. I felt so much better after I'd stopped taking it, I think the advice on this forum is wise, that unless you really need to, it's best avoided. Hth.
Because I had dexa early on we know I already had osteoporosis before going on prednisone. Drs want me to go on boniva i.v. but I 'm waiting to get a little stronger, ? lower dose pred, & need to see dentist. As a moderator said, there doesn't need to be rush to add another toxic rx. I want to be compliant with DRs & don't claim to know more than DRs, but ultimately I'm the one to live with oxic effects of meds. Hard to know if one is doing the right thing.
• in reply toSpanky2019
Hi spanky, can you remind me your t scores please? We are very critical of AA etc but we always say if you have osteoporosis then consider your options. If I had osteoporosis I would want to take something that wasn't a once a year thing that once it's in its in! None of these drugs are "nice" , and of course it may take a while to settle, but neither is osteoporosis as it develops - my late father was severely effected by the end of his life .
That said if my t scores were borderline I would tend towards diet, exercise and supplements (vitd3, calcium and vitk2) and investigate weighted vests.
I have attached this link ....hope it helps🌻
health.harvard.edu/womens-h...
Spanky2019• in reply to
T scores R hip -2.9 & L hip -2.6. Think it said "hip flexor" Also said 39.3 % chance any fracture in 10 yrs. Thank you for reference artcle poopadoop. Good info. Think now's still not the time to do boniva. Not saying I won't take it but just not now.
• in reply toSpanky2019
That's very borderline on one side and may be helped effectively by following heronNS journey with osteoporosis. You may be helped on the bone health forum too.
healthunlocked.com/boneheal...
Spanky2019• in reply to
Thank you!
I have always understood that yourHRT will also be giving you some bone protection too. After 7/8 years on pred my bone scan was good & stopped AA after a couple of months years ago.
I took one dose and was paralysed (quite literally) with pain,I couldn't walk or sit down for five hours. The results of a subsequent Dexa Scan were excellent.
No AA for me.
I take it and don’t actually know if it has side effects. It’s weekly
I take it and I am ok with it
I also take AA (with Omeprazole). Both my sister and my mother had/have quite severe osteoporosis. So far, my bones seem pretty good -I have had three DEXA scans, showing only small deterioration over 11 years since menopause. I also take Calcium/Vit D, and also Vit K2 and Magnesium, and am on low-dose HRT. I haven't had any problems or side-effects from the AA.
No. My choice not to take. Did take for 9 months
Makes you wonder whether GPS actually care about patients just like dishing out prescriptions. Shame they don’t give us the steroids quicker instead of making us wait too see Rhuematologist. Perhaps we would be helped a lot faster
Fortunately not every one suffers "toxic" side effects from every drug offered to us. It's up to each and every forum user to make their own decision about what they are prepared to take depending on their needs. My needs mean I am.prepared to use HRT but not AA.
As a.moderstor I need to remind people it is a personal choice what medication you take and you ultimately need to make that decision based on what you have going on medically with advice from doctors, literature, internet and also forums like this. Every single case is different and one persons experience will not necessarily be yours. Please take this into consideration when making your decision.YBB
No, I'm not taking it. Wouldn't touch it with a barge pole - it's not all the medics and big pharma crack it up to be. Read the book "Your bones" for the best advice. Good luck.
Thank you for your opinion on my response but as a moderator I have to point issues out no matter how often they arise even if this means repeating myself.
My response does not affect yours and is just a reminder that people need to make personal choices based on their situation. Not everyone feels they can question things like others can as I am sure you are aware.
My personal opinion on any drug is just that "personal" and my comments as a moderator are not my personal opinions.
Thank you. I seem to have ignited a bit of a storm here. Apologies. As you say we have choices & with the help of a specialist GP it was agreed I should continue on with low dose HRT. Who knows if I have made the right decision? So far 3 dexa scans have been good & I try & keep up exercise, which now I am back on 5mg after discovering I have adrenal insufficiency is much easier! We have to weigh up the lifestyle choices/risks etc. Best wishes to all
I wouldn't worry about creating a storm. Its good to debate and that's what we have all done. Peoples opinions are as different as we all are ourselves. If your dexa scans are coming back good and you are helping yourself by exercise then that is all you can do. Good luck.
Thank you. Do hope to reduce ever so slowly from 5 to 3.5 eventually but just about to head off to South America so sticking with5 for the moment. X
Definitely dont do any reducing whilst travelling and even consider increasing slightly if needed. When you get back dont be in hurry to start tapering again give yourself time to settle. Good luck and enjoy your time away.xx
Thank you, we have quite a complicated itinerary & ofcourse long flights, so advice gratefully noted.
My fellow moderators are more than willing to moderate my comments should they feel the need. As I could do to theirs.
Thank you everyone for your responses. I don’t know what the values were on my Dexa scan of a year ago ,just that it was ‘ normal for my age’. Anyway I have decided not to take the AA, and take my chances. I don’t have a FH of Osteoporosis, walk the dog about 5 k a day ( in two walks) and try and eat healthy diet. As for the HRT , that was a bigger decision. I had my ovaries out at 32 so was taking HRT a long time, ( 20 odd years) stopped but after 5 years got the ‘ bits’ of an 80 year old, apparently and reg UTIs. A sister with BC, never gave birth myself or beast fed, a bit overweight, so high risk. But, at the end of the day we all have to decide what risks we accept for a reasonably health life.. good luck to all, it’s great we have each other for support and advice 😆
Hidden
Alendronic Acid is always a difficult topic & on the whole l never take part.
1. Because l’ve taken it
2. Because it may very well may have saved Breast Cancer Cells from travelling to my bones.
This is now accepted as Adjuvant Treatment following Breast Cancer particularly for TNBC in Post Menopausal Women.
Everyone’s Opinions on here are respected but we must remember they are only Opinions & not Fact......
Moderators on the whole are Self Moderating but we are over viewed by The Director of PMRGCAUK & her Deputy.
However, if there was a difference of opinion that would be discussed.
Hoping this clarifies the situation for you.
Kind Regards
MrsN
Ambassador/Moderator
Yellowbluebell• in reply to
Thanks mrsnailsx
Oh believe me, I don't need back up but I was actually thanking mrsnails for her view on AA, which coming from someone who not only used it but needed it was relevant to my earlier comment of everyone making their own decisions.
No we’re not, although some do. I was given it when diagnosed with GCA/PMR (hadn’t found this forum then) and only took one dose!!!! I felt so ill and my BP went through the roof so refused to take the second week. I take calcium/vitD and my second dexa scan shows within normal limits again - have the scan bi-annually. I’m over 5 years since diagnosis. Do you still see a Rheumie? If so share what you’re GP has said but don’t take it if you don’t want to, I wouldn’t.
Nothing terse about my comment. I was responding to mrsnails and not you with my thanks.
PMRproAmbassador
She's wrong. Studies showed that calcium plus vit D was protective in patients on pred. After over 7 years on pred at above 10mg/day for most of the time my bone density had barely changed according to dexascan. I took 4 AA tablets before the discussion with a different GP!
No dexascan showing a need - no AA.
Thank you, I will discuss this further with my GP at next review appointment. I believe that up to 2 years on AA could help me to avoid both genetic- and Pred-related bone loss, which is why I am also taking calcium, magnesium and vits D3 and K2. I have never suffered from heartburn or acid reflux (lucky me), so might be able to avoid the PPI, but my GP will not prescribe AA without a PPI. I understand there are several different PPI's available in UK. Is Omeprazole any worse than any of the others? And should I ask for blood tests for calcium, magnesium and Vit D3 levels? My most recent DEXA scans were spine -1.7 and hip -2.1.
Hi, On my 3rd visit to my rheumatologist she was & had been suggesting my PMR was gone but I had Psoriatic Arthritis & wanted me on methotrexate. I had got down to 2.5mg pred. Not keen to introduce another drug. I asked for a test for the adrenals as I still felt so tired. She agreed. I then swopped to 15 mg of hydrocortisone for 6 weeks & had a blood test, followed by a synacthen test some weeks later. The GP was not involved at all I’m afraid & so I don’t know if she would have referred me or not. The 1st blood test was taken by the GP’s nurse but was in a very specific phial supplied by the rheumatologist. Hope this helps. It was certainly worth doing as I now know how to deal with it. X
Should have said how sorry I was to read of your diagnosis. I remember well my discussions with the specialist GP & those figures! It really brings you up short to “meet” someone who became the 1 in 5000. My very best wishes to you. Xx
Yes, positivity is the key. My son, at 29, was diagnosed with testicular cancer. He was incredibly positive all the way through the treatment. Family & friends were very proud. He still tends to find the positives in life & certainly knows how to aim high. Not sure who he inherited that from 😉😉. Xx
My chiropractic son advised me to take Vit K2 with Vit D sometime ago as it enables the Vit D.
I take it weekly and the truth is I know nothing about it. I need to learn more
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No problem - lots of people don't realise which is why I say
GP has acceded to my request for Dexa scan before taking any AA. Gosh, we really need to be fully ‘with it’ and informed with our lovely NHS
Hi
I am taking Fosamax (Alendronate Sodium) and have been for approximately 2.5 years. My first rheumatologist said that since I had a very recent bone density scan that was normal, I didn’t need to worry about bone loss from prednisone. She said taking calcium tablets would be enough. Two months later, I changed to a different rheumatologist. He recommended it on my first visit. He scheduled a bone density scan before I began taking Fosamax. I already had osteopenia. My previous bone density test- which was taken just a few months before I was diagnosed with GCA and PMR was normal.
I haven’t had any difficulties with it at all. My most recent bone density scan shows that my bones have returned to normal- no more osteopenia. I worry about a lot of things with this illness; I do not worry about Fosamax. This is of course, my point of view. Everyone must consider the risks and benefits based on their own situation.
Do you mind saying how old you are, Lauren?
Hello, I used to take Alendronic Acid (AA) but started having serious problems with my teeth. My dentist screeched when I told him about my intake of AA, and was not at all pleased. Since then I've learned that GPs (mine anyway) have been told to stop prescribing AA. Over to you.
Greenheath
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