More about alendronic acid

Gilly - amongst the common side effects of alendronic acid are muscle, joint and bone pain (found in between 1 in 10 and 1 in 1000 patients). It's so easy with PMR to put any of these down to the PMR - but, as you say, they're different in some way.

One web site claims there are something like 1077 side-effects that patients have associated with alendronic acid! Makes steroids look pretty wimpy at 82 :roll: :wink:

The company that developed Fosamax (AA with an expensive brand name) have pushed it hard as a preventative so that there are very large numbers of women taking it and making big pharma lots of money. They actually provided the equipment and funded the studies to show how wonderful it was (in the gospel according to them). In my book that's like the face cream ads that say it is approved by the \"British Dermatological Council\" - a group set up by the face cream company and filled with its own staff. Independent? Non-biased? Conflict of interests? Call me sceptical if you like.

EileenH

Fifities girl

I have had cramping pains occasionally in my chest area. Lasted for about 10 to 15 mins (very frightening) - I could have thought I was having a heart attack but put it down to oesophageal spasm - I often get a tight chest, wheezing and a lot of mucus (sorry!) and the timing of these symptoms lead me to firmly believe it is to do with the steroids or some other tablet causing stomach inflammation. The AA tablet can certainly inflame the stomach. I wonder if it was this for you?

Beev

Hello all

I can also remember having muscular-type rib/chest pain in the earlier stages of PMR on two or three occasions and I'm sure at the time I read of someone else experiencing this. As PMR is inflammation in the muscles, I put it down to the muscle area of my chest being affected - I wasn't taking any medication other than the Prednisolone so in my case it wasn't AA-related.

However, for those of you taking AA with all its current adverse publicity, if you experience similar pain then as Eileen has already suggested, it would be wise to check this out with the Dr as soon as possible.

MrsO

Hi all,

I have been taking AA (Fosavance) for three years now as a dexa scan in 2008 revealed that I already had osteoporosis in my lumbar spine and osteopenia in both hips at age 50:cry: .

I had to give up my work as an ICU nurse as my GP felt that the risk to me from lifting heavy unconcious patients was too great & as I only worked part-time it was not worth jeopardising my own health

I was a bit unlucky in that I had a strong family history (my late Dad and several paternal cousins have it), a premature menopause at 39 (another family trait) and I was at the lower end of the weight scale for my height :roll: ......the up side is that I am at very low risk of developing daibetes :roll: :oops:

Although I find the AA an extremely inconvenient drug to take....all that waiting before your others meds and breakfast....I have not experienced any side effects that I am aware of except for itchy skin when I first started, and I do not get that anymore.

My last Dexa scan (last August) showed a very slight improvement in my bone density, so the AA does seem to be working for me so far....but that said, I will be talking to both my GP and dentist about the long-term effects of taking it :wink: .

I had a toothache after Christmas, and my dentist could not find any reason for it....so I now wonder if it is my jaw that was the problem...I thought the jaw pain might be associated with GCA, but never linked it to the AA??? It has gone away again for now, but i will not automatically assume in future that the problem is an abcess or loose filling, as it could easily be the start of osteonecrosis, and I have NO desire to lose my teeth as a side effect of a drug supposedly designed to strenghten bone :!:

I read somewhere recently that AA should be used with caution on patients who are taking steroids.....so WHY are our rheumy's and GP's not aware of this and warning us to be extra vigilant as regards dental health????

It is bad enough that we seem better informed about our own illness than the \"professionals\"....but we also have to be more aware of the potential side effects of the drugs that they prescribe without any care for the potential side-efffects and adverse interactions :oops: :cry: :roll:

How I wish that ,just occasionally, they could see things from OUR perspective.....what wonderfull doctors we would all have :wink:

Have just finished packing my suitcase for my trip to the Canaries with my daughter on saturday.....if there is as much as ONE drop of rain....I demand my money back :lol:

Love to all, Pauline.

Hello ! Good morning all ! Have'nt drawn the curtains yet...so do not know what the sky is like.....Anyhow: Pauline, me too have been taking AA and so far I do not notice any side effects. But I shall keep an eye on it, and if anything shows up, I shall get to the doctor and discuss it. Yesterday had a moment of madness... (moments of passion are well in the past...)and cut the grass ? :x :roll: and guess what ? I have no PAINS :P 8) Not yet, anyhow ! Hows that ? :P I am ansiously awaiting results of my infection. I do so hope all is OK :cheerup: I have been now,on 7mg Preds for nearly a month, and am anxious to take the next step down, to 6, if I can. I shall be very pleased when I can get down to 5mg. I shall really celebrate that with a nice Martini...stirred, not shaken.... :bubbly: Wonder if and when that will happen :roll: Dear girls, any clues on that ? From your experiences ? Pauline, Canaries ( is that where the \"canaries come from ?\" :chick: Have a wonderful time ! Am I gelous ? Of course I am... :P Like to hear all about it when you come back. Like to say hello to all the girls on this site, that in spite of having this miserable PMR, continue to give support with cheerful attitude. We CAN still find moments to enjoy and treasure, and we KNOW that we are luckier than some poor souls out there, suffering so many other more worrying illnesses. I drawn the curtains, and YES, the blooming sky IS GREY ! :x :shock: Have a day free from pain, and count the blessings that still remain ! :rose: Granny Moss xxx

Have a lovely time, Pauline.

I would like to say that having taken AA for 2 years I wasn't aware of any side effects, apart from the nuisance of all this sitting up straight lark, and feeling desperate for a cup of tea! OK there might have been odd aches and pains but it's very hard to pin them down. AA? PMR? Anno domini? Doing too much one day?

It was only when I went to the dentist that I was alerted and started really following it up. So, having apparently no side effects, doesn't mean that nothing's going on :cry: :cry:

I am paying incredible attention to my teeth, now, mouth wash etc, to try and avoid any more extractions once this one is done :cry: :cry:

Bit gloomy outside today but yesterday was lovely here. I rather needed it as was feeling very down due to dentist etc :shock:

Take care everybody, Green granny

Hi

If you feel that a symptom is due to a side effect of a medicine that you have taken then you may wish to report it to the Medicines and Healthcare products Regulatory Agency (MHRA) via their yellow card scheme - http://yellowcard.mhra.gov.uk/

Patient UK Admin

Hello Pauline

Have a great holiday We have had a few lovely days this week and it is definately getting to look a little bit spring like but yes I would rather be in th Canaries !!

To everyone else I have started to read more about AA ...... Not nice I shall be interested to talk to my Dr about it next time and the Dentist and the Hygenist I havent had any problems yet .... with fillings or extractions needed since I have been on AA but the hygenist did mention bone loss in the jaw but implied it was to do with my not doing enough extra cleaning between teeth and promply sold me all the extra brushes to do it !!

Two of the people I sat with a t lunch yesterday had osteoporsis one was on AA one had had side effects and was on a once a month drug and neither had had dental problems mentioned to them Is there an alternative to this drug for bone loss ( Eileen ?? )

Im glad I stopped it now but it was only because I didnt like the inconvenience of taking it and I was now on a low dose of steroids I looked at Cancer Help Uk and biosophates and it did say if you took them for less ( statistically ) than 13 months it wouldent be a problem and was most common in people who had taken it for 3-4 years

There seems to be something extra to think about every day !! I am next going to look into how long steroids stay in your body after you have stopped taking them and no doubt there will be a 100 different opinions on it !!

Have a good day

Mrs G

I was tried on all the biphosphonates when I first started taking steroids, but couldn't take [i:1603947725]any[/i:1603947725] of them due to increased muscle pain.....so marked that it was clear which pain was which. I also tried strontium ranelate for the first time, but again couldn't take the side effects.

I was diagnosed with osteoporosis of the spine and osteopenia of the neck almost two years ago. (I'm due another DEXA in the summer) and was put on SR again with the advice to hang in there as the initial side effects do wear off. It was a hard month, but they were right and I was able to continue with it for some time - until I had a DVT and was taken off it again (the risks of thrombosis are much highter with SR).

Since then have been taking Calcitriol tabs; absolutely no problems with them, but wonder if they are doing any good? I've refused to read the side effects until I have the next DEXA, will see what happens and review then. I gather that my only option then would be injectable Calcitonin if the tabs haven't helped.

In spite of it all, I'm beginning to feel rather glad that I didn't continue with the biphosphonates at the start.

Oh, Mrs. O - the ironing - I don't do it on medical advice. Having been continually told to pace myself, I find my self pacing [i:1603947725]away[/i:1603947725] from it on a regular basis!

Nefret

Hallo All. At last it's getting light here!. Wake up and look out in hope, like [color=green:cd4e107e2e]Granny Moss[/color:cd4e107e2e] but we seem to have been under a grey lid for days. My grass needs cutting, too. Isn't it strange that there seems to be such a variable reaction to big effort. I've just had the same experience as GM. Woke up today with NO groin pain. First time in months. And yet yesterday was very effortful. Took shingles patient shopping!

No rhyme or reason but glad of the respite.

Treated ourselves to a teasmade. Why have we waited so long? Magic machine

Lucky [color=red:cd4e107e2e]Pauline[/color:cd4e107e2e] to be going to the Canaries. Have a lovely time and bring some back with you, please.

Re AA, have posted before and, reading all the latest posts, am glad I had a bad reaction so soon. Also don't mourn my teeth. Thoroughly happy with my plastic ones. [color=red:cd4e107e2e]Mrs.O[/color:cd4e107e2e] ( I think ) They don't have to sit in a glass!!.I've always gone for the straight in after extractions option and was always told it was much better to only remove for cleaning. In case this does not appeal to anyone in need I can only say it really only feels as though the gums have been bandaged and, being a good healer, back to normal within a week.

My sister, no PMR and no AA recently had a couple of implants at four figures a time!! and had to have dead jaw tissue removed first. No pain, but the result of infection, she was told. She's delighted with them but I think I'll stick to my bog standard dentures. I'd need a mortgage!

[color=red:cd4e107e2e]Fifties Girl[/color:cd4e107e2e] Your expeience must have been so frightening.I think I'd have been dialling 999.The stupid thing is that, as you say, no one really has any evidence that you need AA. I'm afarid I'm with [color=red:cd4e107e2e]Eileen[/color:cd4e107e2e] where the motives of Big Pharma are concerned. I used to be trusting, too, but that was in the days when standards of behaviour and morals were much higher. What has happened? Better not quote names; might not be allowed. Famous for her handbag.

MrsO - yes there are other drugs which can be prescribed if the first line drugs (i.e. the cheaper ones!) cause problems. Nefret mentioned one, strontium ranelate. I believe there are others and also other formulations which may also pose fewer problems.

Nevertheless, I am strongly of the opinion that we should be monitored for osteoporosis first of all and the drugs only given when essential. Above all - and this is one of the things that concerns me most - if there is a presumptive diagnosis of PMR then you should be trialed with the steroids first of all and if that works fast and well that forms quite a concrete basis for a confirmed diagnosis of PMR. Then a DEXA scan should be done at an early stage of treatment to provide a baseline and be repeated a year or so down the line (MrsK and I have mentioned before that there are varying attitudes to this: she gets an annual one, I have been refused a repeat one after 18 months in the neighbouring Trust). If the scans indicate a problem with bone density then you can start talking about bone density medication. But I do not believe it is a good idea to start steroids and AA at the same time as it muddies the water if someone then has a response as 50sgirl has described (for example) because then it is impossible to tell whether it is the steroids not working for her disease or whether it is side-effects due to the AA. In science you NEVER change more than one parameter at a time for that reason.

Before it is given, however, both your calcium and vitamin D levels must be checked and corrected if low - unless both are optimal the bone density medication cannot work. And how many of us have a low vit D? Judging by the past discussions here, quite a proportion of patients will come under that heading and this need for testing is pointed out in the pharmaceutical company's bumph. As is the need for care with dental work and of reporting any discomfort in the jaw. Most jaw problems have been noted in cancer patients on chemo and steroids - so there is a question there as to how much the mixture of drugs is involved. If the hygienist noted bone loss they should have done more than flog you dental floss! It may be coincidence - but if you are on AA and friends then that needs to be checked out properly.

You can use HRT to combat bone density loss in many cases - MrsK swears by it! It has worked well for her. Of course - that was another miracle treatment until they found some downsides and were scared off using it. However - if I had the choice of HRT or AA as a means of bone protection I think I might plump for the HRT. Anyone who had osteoporosis before they were diagnosed with PMR was either suffering from the post-menopausal variety or had a bad history - the way to avoid osteoporosis is to start in childhood with a good full-fat, calcium-rich diet and plenty of body-weight bearing exercise in the sun. That is the current risk we have spoken about with the vit D story in combination with the modern sedentary life-styles. Even with steroids though, a good diet with plenty of vit D and calcium plus as much walking as possible may be enough to avoid the osteoporosis - since there is the means to monitor it I don't see why we should be stuffed with more chemicals \"just in case\".

EileenH

Eileen

[color=blue:f497be7a29]\"Before it is given, both calcium and vit D levels must be checked and corrected if low - unless both are otpimal the bone density medication cannot work\"[/color:f497be7a29]

You may have answered my lovely elderly aunt's reason for her bone protection meds not having worked. She is an extremely active and very fit 85 year old apart from being diagnosed with osteporosis many years ago (total hysterectomy over 35 years ago - possibly too early for HRT to be prescribed?)

The last drug she took for some years was Fosamax and the latest two DEXA scans apparently showed increased bone density!!! However, she suffered a sudden fracture of her spine (no fall involved) which stopped all her activities and she immediately sought the opinion of a highly recommended consultant in this field. He promptly stopped the Fosamax saying that it was doing her no good at all. After writing for approval (apparently it's very expensive and he told her that her GP would not have prescribed it!) he has now put her on the Forteo Pen (a daily injection) for the next 2 years, saying that this would prevent further fractures. She is now back to her 3 x weekly swims and gym sessions and her beloved sequence dancing also 3 nights a week........at 85 years of age!!!

One big questionmark remains over why the DEXAs showed increasing bone density yet she still had a fracture - maybe the density was so low originally that even small increases would not have protected her. When doing a bit of research for her I did discover that the DEXA may underestimate bone density if you are small - she is just 4ft 8ins and a size 10! Equally, apparently if you are 5ft 10ins or more the DEXA can overestimate.

So your comment about bone density meds not working if there is a Vit D deficiency would seem to have possibly applied in her case. I know the consultant organised the blood test and she is going to ask for the reading when she next sees him.

Sorry, I've forgotten how to precis and gone on a bit! Thanks for all the info though.

MrsO

Hello everyone and apologies that I have seemed to have disappeared from the discussion...... have been with my daughter and grandaughter today and actually took my grandaughter into the pool for her 'swimming lesson' :lol: :lol: Had a lovely time but then by the time my daughter drove us to her home, my grandaughter had had her lunch, this Nana was exhausted and has spent the last few hours with feet up, dozing :wink:

Have not had the time as yet to go onto the RA site Eileen H recommended but will over the week-end.... will also read all I can about AA. Have obviously discussed all of this with hubby and I will now discontinue the AA until I see my doc a week Monday when I will discuss it with her and hopefully she will have in front of her my bloods plus Vit D levels etc etc

I know that the forum moderator has asked that 'symptoms' associated with a drug be reported via the 'yellow card' system but as I am unsure as to whether what I am experiencing is due to PMR or AA will not do so until I have spoken to my doc and had her take on this.

I did speak to my daughter about all of this today and she is really worried on my behalf but wants me to continue with all the prescribed medication until I see rheumy and have my DEXA scan at the end of March.

Am also seriously thinking of seeing Prof Dasgupta privately AFTER my appt with my rheumy at the end of March if I am disatisfied with what he has told me etc

As my daughter so rightly says ..... I need a definitive diagnosis and 'proper' treatment for the disease I have.... not a hit and miss affair which leaves me in pain and despairing.

It will be interesting to see if my lower hip, groin and upper leg pain disappears with not taking the next dose of AA...... :roll:

Just feel 'all at sea' at the moment and don't know what to expect. Just want some quality of life and the ability to get out and about albeit in a limited way.

Thank you each and every one of you lovely girls and hope that everyone is feeling comfortable and happy :D :D

Hello Fifties Girl

Glad you have had a nice day with your family

I certainly would do what you are doing and not take any more AA I agree with Eileen that they should have Dexa scans done before they prescribe AA I first had PMR in 2002 and AA wasnt given then it was just Calcium and you had a Dexa scan to see what your bones were like As mine were OK no further action was taken My Dr said to me this time that opinion had changed and they were working on prevention rather than cure

There is so much on the web about AA you could sit on the computer all weekend !Didnt realise it was given to people with cancer There is lots under Biosophate side effects

Good idea to see Prof Dasgupta privately if he doesent know there isnt much hope !! I certainly wouldnt stop the steroids unless you have some really severe reactions then I would see the Dr immediately or go to A&E

Really hope you get some results shortly

Have a good weekend

Mrs G

Hello Mrs G.....certainly won't stop taking the steroids.....my lifeline! Just the AA......am still going to take my Calceos and my diet is rich in calcium too.

Wishing one and all a happy week-end regardless of what the weather is going to do to us!