I am new here, I just want to warn other people about taking Alendronic Acid 70mg tablets. I had my 2nd dexa scan about 2 weeks ago the one i had two and a half years previously showed i had osteopenia i was perscribed calcium and vit D at the time. The 2nd dexa report was sent to my gp it showed i had osteopenia , and was borderline osteoporosis in my spine , gp called me and told me i should take this great new drug name mentioned above he wrote me a perscription , my pharmacist advised me to tell my dentist when i started taking it as it could cause damage to jaw bone teeth etc, and that it had to be taken a certain day of the week , and you had to stand up for half an hour afterwards. I went home with I then i started to read the leaflet that came with the tablets i could not get over the list of side effects another one of them being ulceration of the osephagus , my young brother died of osephagiel cancer a few years ago , i also went on line and read reviews i decided not to take them and made an appointment with my rheumatoligist ,I am so glad i did I brought a copy of the dexa scan with me i told him of my concerns about taking the alendronic acid , he was really annoyed my gp had perscribed AA he said there was no need for me to be on it , that all l i needed was a perscription for Vit D drink that i could take once monthly, he also said that he does not perscribe calcium for any of his patients. hope this is helpful to other people considering taking AA.
Alendronic Acid 70mg tablets my experience. - PMRGCAuk
Alendronic Acid 70mg tablets my experience.
My doctor has given up on trying to persuade me on those "acids"....it shocked me also of the side affects..I do now have Osteoporosis but will take my chances...the natural way. You seem to have a good rheumato!ogist, stick with him!....
Thanks for your reply you are right not to take the aldronic acid i would rather have osteoporosis too than all the side effects of it we wil take our chances and hope for the best best wishes
I take A.A.
There has always been a lot of discussion on here about AA.
General consensus of opinion is get a DEXA scan to prove whether you actually require it or not. If you don't, then decline it. Some do need it, I did for example, and took it for 3 years. Can't say it has left any problems, well not that I know of - and you don't have to stand up after taking it - just have to NOT lie down.
Most patients in the UK take a VitaminD/Calcium supplement daily (prescribed when Pred started) and that seems to be all the protection required for most.
I declined AA, GP wouldn’t give me a dexa scan, consultant did, and it proved I didn’t need it. GP prescribes VitD, but not calcium as we can’t find one that isn’t full of artificial sweeteners (cause me nausea). But he says ‘I probably don’t need it’. I do drink a lot of FF milk and eat oily fish. I take vitK2 and prunes when I remember, and walk as much as I can.
My VitD is Fultium-D3, beautiful blue colour as it contains E133 (Brilliant Blue).....WHY? And you guessed it, my wee turns nearly blue too 😊
Really - WHY does ANYTHING have to contain artificial colour??????
Not a clue! I’d have thought natural ‘yuck’ colour would be preferable to tasty ‘sweetie’ colour.
When son number one was little, he couldn’t take Calpol, not because he was allergic to paracetamol, but because of the bright pink colour, it quite literally made him vomit. But try telling the medics that! He was left post op in pain because they ‘had no alternative’ Disgusting! Of course Mummy had colour free Disprol in her bag. Soon sorted that 😉
I have Accrete D3 on prescription and there are no artificial sweeteners listed as ingredients - just a little sucrose. They are a film coated tablet - pale yellow from yellow iron oxide (E172). I cut them in half on the score line to take them as I wondered if they might be passing through my gut - I'll spare you any more information!
Each tablet: 400IU colecalciferol and 600mg calcium as calcium carbonate.
Thanks for that Rugger. Both GP and pharmacist looked and said they couldn’t find anything. I shall enlighten them now, cheers.
They contain Macrogol, that’ll be your gut issue 😮 prob wise to halve. I’ll bear it in mind if I get any.
I stopped taking AA a while ago because of what I read on here. I don't like how it remains in the body for years. I take VitD supplement instead.
Thanks for posting. Your GP sounds great.
I like the sound of your rheumy. The only thing I dislike about mine is that she is angry with me for refusing to take AA or any alternative. I have osteoporosis but I'm willing to take whatever risk I run by avoiding this medication. There is so much evidence out there that the hard bone created by bisphosphonates is more likely to break.
I heartily agree......most of the time I think we are guinea pigs with drugs....
I am living as healthily as I can. I've bought a weighted vest and intend to start using it next week with just a few light weights to start. I practically live on fresh veg and salads and always take my calcium, vitamin D and vitamin K2 supplements. It makes much more sense than taking what is essentially poison as far as I'm concerned.
You are so right thanks for replying keep strong
I stopped taking AA in January this year after taking for a year. I haven’t had a dexa scan yet but am going to ask for one at my next GP appointment. There seems to be many anomalies the way we are treated with PMR. It seems we are given drugs without knowing if we really need them and blow the consequences. I have also halved the dose of the Adcal I am prescribed. Peeps on here know more of this illnesses then the professionals ie GPS and Condultants
I refused the AA because of the awful possible side effects, they were scary! Insisted on a dexa scan, which showed normal bone density apart from one - borderline osteopoenia, so I'm not taking AA. I was on the Adcal, but stopped them as it was giving me heartburn, so taking a Vit D3 spray and making sure I get enough calcium I'm my diet. Dr agreed with this. Seeing a rheumy for the first time at the end of the month, so it will be interesting to see what she has to say.
I refused AA as well, thankfully my doctor accepted my decision. She did prescribe calcium tablets. I’ve stopped taking them now because of the unexpected side effects. We have to be proactive with this disease, in all of our health problems, difficult when we feel so poorly. We need to question and research. I’m thankful I’ve a wonderful doctor who listens and understands it’s my body. Hang on to your rheumatologist he/she sounds incredibly sensible.
I too declined the AA and both my GP and Rheumy respected my wishes as my Dexa scan was good. My concern is with taking too much calcium now, I take Adcal-D3 twice a day. You say that you’ve stopped taking them because of the side effects, can you tell me what those side effects are please?
Extreme exhaustion, bowel problems and lack of appetite. Originally I was prescribed calcium in 2010 after a bone scan showed osteopenia, 6 years before the onset of PMR. No one told me not to take it at the same time as my Thyroxine so I presumed, in my ignorance, the symptoms of exhaustion and very dramatic bowel problems (doctor sent me for a colonoscopy, what joy) were from mixing the tablets. When I discovered I should have been leaving 4 hours between Thyroxine and taking the calcium I decided to hell with this and stopped taking the calcium. I’d had enough and thought I’ll do this with diet and exercise. Which I’ve been doing, exercise since PMR isn’t as good. I had a recent bone scan and the results were similar to my last scan. I told my doctor I wouldn’t take AA, which she respected but did ask me to consider calcium. I agreed, thinking my previous problems were caused by taking them at the wrong time and the calcium reacting badly with the Thyroxine. No it wasn’t, suddenly the exhaustion was dreadful, the worst I’d suffered from during my three years of PMR, my bowel became interesting shall we say and I lost my appetite. I stopped taking the calcium five days ago and I feel so much better. Yes, it could be my imagination I’m going to leave it a week or so and try again with the calcium but my gut feeling, in more ways than one is forget it. The information leaflet that came with the tablets listed the possible side effects. I’m going to have a chat with my doctor and see what she says but no way do I want to feel so utterly exhausted, could hardly move some days. It was beginning to really depress me. I hope this rambling explanation helps!
Side effects include muscle and bone pain breast cancer prostrate cancer heart attack and stroke frequent urination excezive thirst high blood pressure are just a few symptoms of too much calcium in your system hope this helps i am just going to stop taking the calcium and continue the vit D eat healthily continue walking and swiming and take my consultants advise and hope for the best
This is very interesting for me. I too was told I have ostepenia and was prescribed alendronic acid. Within days of taking the first pill at the beginning of January this year, I got terrible pains in my muscles (bottom, thighs) and the bones in my lower legs started to ache. I also experienced heartburn. After taking them 4 times, I stopped (against the wishes of my rheumatologist) to see if my pains would improve. They did and continue to do so, gradually.
Morning!! I have had the same battle with my GP and to a lesser extent with my Rheumatologist. My dentist doesn’t want me to take AA and I’ve previously had an ulcer. I take Ranitidine at different times of the day to my calcium supplement to protect my stomach and duodenum from the effects of the Pred without decreasing the effect of the calcium. I also take Vit K2 with my calcium. My GP prescribed a sweet calcium D3 supplement, but I found a good over the counter similar supplement at Boots the chemist called Osteocare {it’s without sugar}. The downside of course is that I have to pay for it! The Osteocare has some minerals magnesium, zinc, boron and selenium in it as well and these are all good for bone health as well as they have stopped the cramps I was getting as a result of taking Pred. The Osteocare provides about 800 mgs of calcium a day plus Vit D3 so I make up to 1200mgs calcium with yoghurt, milk, almonds, salmon etc. Can’t have another Dexa scan until 2020 so I’ll just keep walking as much as I can until then and cross my fingers. My mother had PMR and was put on AA to counteract the effects of the Pred and Omeprazole (which we now know is not a great choice of drug). She still suffered awful digestive discomfort and mouth ulcers and lost her appetite. She stopped eating properly, lost loads of weight and of course her strength and fell over several times as a result. She ended up fracturing her pubic rami, collar bone and hip over the course of 18 months and died as a result of complications following her hip op. Personally, I’m taking my chances until I get my DEXA scan result, then I’ll have another conversation with my Rheumatologist. He has offered me a couple of different drugs, but neither of them are without significant issues. He’s also suggested Methotrexate, but again that comes with its own set of problems. The joys............Xx
Thant`s interesting what you have written, especially having seen what your mother went through...horrible,....I will look into the Osteocare, and I do have the roughly the same things that you have said you eat...
It`s a worrying and difficult decision this bone health dilemma...….and I have read in the past many people have Osteoporosis and don`t know it....sometimes ignorance is bliss methinks...
Just a note that I took Alendronic acid for 20 years (!) stopped for a few months last year and am back on it again. Weekly tablet. No bad effects that I know of.
Thanks so much for your post about AA. My GP prescribed it for me and I have been taking it despite my dentist advising me not to. I shall discontinue it and see how I go but am taking a vit D supplement each day.
I'm seeing my rheumatologist in 5 days, for the first time since diagnosis of PMR and possibly GCA. So relieved that my appointment is almost here! I know that prednisone will become a part of my life, but would like to know if there are other drugs to avoid like Alendronic Acid?
I suggest you post the question as a new thread - more people will see it and express their opinions.
Thank you. I thought about that after I replied.
I do despair sometimes. Years ago, an Adcal Rep obviously called at our GP Surgery because every woman of a certain age received a letter from a GP on Adcal headed paper, telling us that we needed Adcal D3 & to call in to see a GP. At that time I wasn't ill & didn't question doctors. I tried the Adcal D3 for a few days & felt ghastly, so stopped it & told my GP why. She said several ladies had said the same thing.
Fast forward a few years! I now have an obscure autoimmune disease & am under several Clinicians. My Vit D was tested in 2017 & found to be deficient, so I was prescribed 1000iu cholecalciferol daily for life but I don't need calcium. It is interesting how people always assume that you have to take calcium, you don't! It is the Vit D3 that is important but don't get carried away, the body is a very finely tuned machine & as we know, it's grteat when it works well!
My Vit D was 17, it then rose to 51 & my one Consultant said she was happy with that. A year later & it is 73, the GPs are happy but, I am not! I am feeling yuk again & even thought I would go to an Endocrinologist privately. I made an appt. He told me to save my money, my PTH level was elevated because my VitD was still too low.
I have done some more reading & it appears that I can double my dose of cholecalciferol without causing problems, so I am trying that until I see one of my other NHS Consultants.
I was prescribed AA when I first went on Prednisolone & I took it for a while but stopped it because of dreadful pains in my joints/muscles. That was in about 2010.
There is a tremendous amount to learn & GPs don't have the time any more because of the pressures they are under.
The reasoning behind the calcium supplementation for us is that when you are on pred you lose more calcium through the kidneys. Making sure your intake is a bit higher means there is more calcium around in the blood and so there is less likelihood of calcium being leached from the bones to keep the body working properly. A study found that it DID protect from loss of bone density in patients on pred. You are quite right - calcium is not needed for the healthy. But we aren't normal healthy adults.
Just as an aside, a friend of mine who is battling cancer was prescribed Adcal like me and everyone else it seems on here, she has never taken it as she couldn't stand it and they keep giving her a box of tablets each month or so, which she adds to her collection at home which is now building up. She hasnt told the Dr she's not taking it. Each time she has her bloods checked she asks about her blood calcium levels. The answers are always the same..... Perfect!! Proves you can do it through diet and healthy eating.
Hi Lonsdalelass
Re your friend who has Cancer & has been prescribed Adcal, what type of Cancer does she have?
MrsN x
It's now in her lung and bones. Originally breast, this is the third attack, she's been so unlucky poor thing.
Ah, Bless Her 🙏🏼
l was just wondering as l’ve had breast cancer & was started on a 3year course of Zolendronic Acid every six months, making six in total. It’s a fairly new protocol just over 3years old & l was actually the first to finish out of the Starting Group. I’m just at 3nhalf years, which is not the best time for my sort of BC but fingers crossed l’ll get to Five Years without any setbacks.
Has your friend been prescribed AA by the Hospital Team, as they may be recommending it to support her bones? There are other options like the Zolendronic Infusion which l had, without issue as when you have Cancer you are inclined to do a deal with the devil.
Maybe you could encourage her to ask her Team why it’s necessary for her to take AA then explain that it doesn’t suit her & maybe they would consider a different option.
It was just a thought & hope you don’t mind me mentioning it.
Kind Regards
MrsN
Hi thank you. She does have an injection once a month but it's not the AA I don't think. I'll mention it to her. She's brilliant at trying alternative medicines and is doing so well.
Ah OK just wouldn’t want her to be missing out on anything, the ZA is every six months.
You’re a Good Friend xx
drugs.com/drug_interactions...
This is a very useful website because you also need to know when to take your drugs & what to avoid taking at the same time
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