My GP is not very happy that I have not taken it! How many of you have taken it? Has it caused problems with your oesophagus??
I am worried about taking it so would appreciate your feedback please.
ALENDRONIC ACID - To take or not to take, that is... - PMRGCAuk
ALENDRONIC ACID - To take or not to take, that is the question! M
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Lee1945
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DorsetLadyPMRGCAuk volunteer
Hi,
Do you actually need it? Have you had a DEXA scan to prove it’s required? If not, then don’t take it.....most manage on VitD & Calcium supplement plus full fat dairy products.
I took it for 4 years because I needed it and never had any problem. But it’s your choice, don’t be bullied into it if you don’t need it.
Thank you! I am having problems with my hands, feet and legs but have not been offered a DEXA scan!
I hate taking questionable drugs which can cause damage to the oesophagus especially as I already have some damage
We are all different, but yes I gave up on the bisphosphonates early on. I was first prescribed Risedronate, which caused pains in my knees and in raising my foot from the road surface to the kerb surface. I went upstairs on my bottom. I gave up after about 5 tablets. Alendronic acid had worse side effects and I gave up after 3 tablets. Weakness in my knees still exists, 3 years after giving these tablets up, nut recent;y I've felt that soon I'll be able to get out of a chair without having to press down to lever myself up.
CelticPMRGCAuk volunteer
Lee, AA was never suggested for me so I didn’t take it. My bones remained fine for the duration of steroid treatment starting at 40mgs daily. As DL has mentioned, if you haven’t already had one you do need a DEXA bone density scan to find out the present state of your bones. If you are then found to have normal density, you don’t need AA.
Thank you for your feedback! It looks like I need to wait until June 15th when I see my rheumatologist to ask for a DEXA scan then. Meantime I need to have more blood tests done. GP was not happy I have not taken AA but I already have problems with oesophagus. Surely there must be an alternative treatment
If you have oesophageal problems then that is normally regarded as a contraindication meaning you shouldn't have AA - and that is something your gP should have borne in mind. There are alternatives - not least infusions which avoid the gastric aspect.
I have now been referred for an infusion that takes 15-20 minutes and will only need it once a year!!
Today I was also diagnosed with RA and have to wait for a scan of my neck which is crumbling!! Also bejng referred for physio. Oh how my life has changed in one year!!!
Took their time didn't they!!!! What did your dexascan say?
Yeah - seems to be all downhill from a certain point!! Worse still when both of you in a couple get to that stage...
My Dexa scan shows osteopaenia. Now my rheumatologist says I also have RA and the bones in my neck are crumbling!! He has referred me for a scan! Also referring me for physio as every.part of my body is aching so I get very little sleep!!
I will just have to wait for my appts and then I will see my rheumatologist in April.
Meanwhile I will see my GP. I.am.so nervous because of the condition of my neck.
My mother suffered with a degenerative neck and spine and my younger daughter who is 43 also suffers with it as well as fibromyalgia.
Only time will tell and thousands have worse problems to deal with!!
Lee, whilst waiting for your June appointment, if your pain allows try and do regular walking - it’s a good weight-bearing exercise for the bones, as is using stairs. Also, eat plenty of oily fish such as sardines and mackerel - not only is it anti-inflammatory but it is also good for our bones. I assume you are taking calcium plus VIt D?
Hiya Cedric, I live upstairs so am up and down them numerous times each.
I will increase my fish intake - I love fish.anyway - just don't like the smell left around.
My rheumy advised walking so I walk a fair distance even though it exhausts me.
I am taking Adcal two times a day.
I will ask about or perhaps insist upon a DEXA scan.
Thanks for your help
PS I have had falls but never broken any bones. One day I fell from standing upright and went down like a mannequin - straight down onto my face and not even a fracture!!
Well it's looking good on many fronts, Lee, not least that you have had falls that haven't resulted in fractures - that's a very promising outlook for the DEXA result. Far better not to have any falls at all though!!
Well done with already eating fish - especially if its oily.
And another well done with the daily walking. However, try not to do it to the point where it "exhausts" - not good for the PMR inflammation. Splitting the walking into a couple of shorter ones, perhaps morning and evening. might leave you less exhausted.
Do come back and let us know how you fare with the DEXA, and good luck!
I received an appt for my DEXA scan at Kent & Canterbury Hospital on Sunday 17th June
Not too long as appointments go, Lee. On hols at the mo but will be back in time to hear your results! Good luck!
My DEXA scan showed that I already have ostopaenia! My GP said it is because I have refused to take the Alendronic Acid.
I have asked her to be given an infusion instead and she has sent a request through to our local hospital.
Does anyone on this forum know of any alternatives to Alendronic Acud??
Would agree with this. Lots of green veg and turmeric, too.
Especially the turmeric, Pym - we had many a yellow-coloured meal during my PMR/GCA days! A little bit of 70% plain chocolate as an anti-inflammatory treat, too!
Hi lee1945. It was my doc that sent me for a dexa scan. He wanted me to take AA but I refused (he was not happy) and asked for a scan to see the state of my bones. He agreed. The report from the hospital said I should have it repeated in 2 years which I did. So my suggestion is to start by asking your doc for one as he is the one pushing the AA. Once you are in the system the hospital will decide when to have your next one and they make lifestyle suggestions depending on the results (ask for a full copy of the report). All the best cc 🤗
PMRproAmbassador
I didn't take it but have taken calcium/vit D supplements the whole time. In over 7 years on pred my bone density had barely changed and remained in the acceptable range without any AA.
You need a dexascan - to see if you need it at all at present. If you need it - even I would consider it. If you don't currently then there are ways to improve bone density that don't require heavy-duty chemical management. HeronNS is the expert on that.
Thanks for feedback. I really do not know why my GP was so "off" with me because I am worried about taking AA.
Because he has been brainwashed it is essential and that bone density loss is inevitable with pred. No it isn't.
I am having a lot of problems with my legs since starting steroids - walking is painful and I am in constant pain all over! I cannot find any way to be comfortable asleep or awake
Hi, Lee1945. Here is how I came to my decision and the journals I used to support it.
healthunlocked.com/pmrgcauk....
Thank you - I will read it and see how I feel. I am so confused. It seemed that my GP felt 'insulted' that I had not just taken something that worries me
Doctors have those things called 'egos'. They don't like to be challenged.
I was prescribed Prednisolone together with Alendronic plus Calcium & VitD all together at the start. It was a couple of years before I was sent for a dexascan. It showed borderline osteopaenic (sp ?). However I will never know what my bone density was before. I am keen to stop Alendronic but Dr insists I should not referring to fracture stats for older folk. Dubious stats I think. However I have not been aware of negative effects of taking Alendronic for me personally. I am now having 1:1 sessions at gym to try to build up muscle loss. And walk more!
Lee 1945, I am in the same boat but I know I have osteoporosis after a DEXA scan. My dentist is dead against it and my GP just doesn't understand that I won't take it. I have already got bad gastric problems and the thought of making it worse frightens me. The articles I have read show that these medications do not allow the natural process of rebuilding to happen and you end up with bones that could fracture more easily. I would ask your GP to arrange a DEXA for you May
I'm in a similar situation to May10 in that my DEXA scan showed that I have borderline osteoporosis. I tried AA for 4 weeks and was crippled by terrible oesophagus pain and food sticking and refusing to go down. My rheumy booked me in for an intravenous version but in the meantime I read the articles that May10 read, decided not to go ahead and cancelled the appointment. Subsequently I was persuaded to accept a prescription for Risedronate sodium, an oral alternative to AA, which I was told might not cause the digestive problems, but I haven't taken it. I prefer to live with the risk of falling and having a fracture mend naturally, rather than the risk of breaking a bone because of the medication I'm taking that then takes much longer to heal.
Hi. Drs these days prescribe in accordance with the NICE guidelines. This fairly fat book! details what they should prescribe for each diagnosis together with add on drugs. If they don't follow the guidelines and have not indicated in the patient's notes that the patient has refused to follow their treatment, if there is a health issue later, they are vulnerable. So in essence they are covering their a##es. NICE makes its recommendations based on research and what we now call Evidence Based Medicine. BUT the pharmaceutical industry drives much of this research so I am always sceptical about validity of the results. It takes years for guidelines to be established but also years for changes to happen. There was an article in last Sunday's Mail on Sunday explaining how GPs are paid and the pressure to prescribe. It's scandalous.
I used to take it but I developed gastric problems and made the decision myself, but the rheumy was understanding and I am waiting for an appointment for an infusion at the hospital which will be the only way , that will be once a year hopefully it will not cause any problems .
Dear Jamie345
If you're having an infusion presumably it is Zoledronic Acid. You should be aware that it has 112 side effects. I had 10 including 24-hours amnesia on the day after, my GP reckoned it was my body shutting down to absorb the Bisphosphonate; a fearful cold, a 2-month long cough and spread over my legs a series of open sores and blisters. These last two may have been particularly bad because I am also having Testosterone Replacement Therapy injected for my born with Klinefelters Syndrone every 28-days, which seriously thins my skin.
My Rheumy has taken me off the Zoledronic Acid because of so many side effects and replaced it with a Denosumab injection every six months for three maybe 10-years. I am not a normal GCA patient having other conditions at the same time. Don't know when the Osteoporosis started, know that at 14-years 2 of my spine discs fused together giving me a permanent curved spine. Klinefelters diagnosed in 1996, when T.R.T. started and Osteoporosis changed to Ostepenia in 2003.
Of course if you're not having Zoledronic Acid but something else then sorry to have confused you.
Regards
Colin
Thank you for your information I was in complete ignorance as to side affects which sound frightening, but I will now look into it in detail! Don't want to have any more pain /illness bad enough as it is, I'm tapering down at present on 12halfm from 40mg each time I seam to get flare up for 4/5 days then settles, but I would not be able to handle any of those side affects as well, I hope your not suffering to much, and again thank you for the info.
I took Fosamax for the first two weeks (i.e. 2 doses) after PMR diagnosis and then developed an oesophagal reaction, a feeling of being choked or strangled. I've taken nothing to replace it since and now, 18 yrs later, I am only mildly osteopenic. I was offered Prolia after my last dexascan but declined.
I said no to my GP last week when he said I should take AA . My Dexa scan showed that I was ok but he thought I should take it ‘ just in case’ I fell and broke my wrist.
I told him I had read research papers that said AA built up bone density but not strength, that I was prepared to take the risk and I would try very hard not to fall.
I have three sisters who take it and don’t appear to have any side effects. They just do as the doctor tells them so I have no idea whether they need it or not,
Prescribed it - read the patient notes - no way would I take it. Don't know what the GP's reaction would be because I haven't told him! I don't take the calcium carbonate either - one dose had me on the loo all night with stomach cramps, diarrhoea and gale force wind - possibly the same effect that blackboard chalk would have if I chose to eat that - it is basically the same thing after all!
I know we shouldn't but like you i decided not to take my AA. I have enough problems with my health and already suffer from gerd which causes terrible pain. Also my dentist has shown concern about it. I do have to take Vitiam D3 as I have hyperpyroidism so hopefully that will help. Wish there was a herbal remedy that would do the same thing
Why shouldn't we cefnonn? AA causes more problems than it solves creating overly strong areas of bone without removing the degrading weak bits and so makes us more vulnerable to fractures, not less. To say nothing of other possible/probable complications. Far better to take magnesium D3 and K2 and indulge in some resistence exercise.
Thank you. With so many concerns about AA why aren't they doing something about it 😕
Don't know, but problems such as this are rife across the medical establishment and the pharmaceutical and food industries. To do something about it would mean people would have to admit liability for irregularities and at the end of the day people would lose money. It is impossible for the pharmaceutical industry to make money out of making people well. We don't need processed food - it is known to be bad for us - but we are encouraged to eat it - if we don't eat it then many people would be out of jobs. Look around when you next go to a supermarket - most of the food there is highly processed - remove all that from the shelves and think about how many jobs would be lost. People would be less ill and live longer but they wouldn't have jobs! One goes round in circles.
• in reply tocefnonn1
And calcium....can come with the D3. The is an old post so if you have questions it is worth opening a new post.
My DEXA scan showed that my hips and thigh bone were very strong, but that my backbone was weak and as such was diagnosed as having osteopenia. I stopped taking AA when I asked for and received a copy of the DEXA scan results. As for falling it's something I do, trip over my own feet, or slip on snow. My last major fall was when I had PMR. I fell at home, somehow cutting open my left shin. I'm on Warfarin as I have permanent atrial fibrillation, so was in hospital for 3 days while they largely stopped the bleeding. My last fall was a couple of months ago in icy weather. Fortunately there was a passer-by who helped me to stand up. I'm 6' 7" tall, and because of weakened muscles find it hard to get up from falling down, usually a matter of getting on to my knees, crawling to something I can press down on and levering myself up.
Exactly how I get up, but I've lost inches off my height i am always tripping up, banging into things so covered in the awful red bruises due to the predisinone making my skin so thin, looks like I've been beaten up, I'm female so vain! I'm trying all sorts of camouflage, anyway we have to be extreme care how we walk, hshaha
I was like you
In the end decided to take it for 2 or 3 years been on them 8 wks no problem so far if you get side effects you can always stop
Prunes and blueberries are good for bone density
So I eat them too
Hi I was offered this but, following the advice given on this site, I queried whether I should have a Dexa scan first to make sure I actually needed it. My GP, who is open to suggestions (!!!???) said that was a good idea and he then told me (at great length) all about the new Dexa scan machine our local hospital had just bought and how good it would be if he could refer me to it. Somewhat dazed I said well let's go for it then and we did and it came through very quickly and turns out I don't need alendronic whatsit at all. I have the bones of a young woman apparently. Pity the face doesn't match ............ Good Luck with your not very happy GP!!!
Hi Lee1945
What a dilemma for you, without any evidence To back it up.
My Gp always says less is more.
I have been on steroids for almost 2 years now, gosh it goes quickly.
Started at 20 now at 4 mg.
In January they ordered a dexa scan , which showed osteoporosis in lower spine, but only just in the limits. So told to go on AA, not happy about doing so. Wish they did the scan at the beginning 2 years ago, so we had a bench mark.
Anyway I did after much pondering give it a go. And so far no detrimental side affects to report.
Although we are all different I know.
I also do on top of yoga , Pilates and lots of walking. I think it’s important to look after ourselves and do what we think is right for us at the time.
Good luck with everything
Carole
This morning I phoned my GP and asked for a DEXA scan. She said she would look into it and if appropriate refer me. I do not think she was aware of it - her instruction manual probably just goes 'prescribe AA'.
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