Alendronic Acid side effects

Hi Beev!

Generalised muscle, joint and bone pain (not severe) has been reported with alendonic acid - according to Wikipedia, and the article is obviously derived from the official bumph, though whether it's from the company or the USA's drugs monitors I didn't check.

EileenH

Hi Eileen

Yes - I know - i've read it on the bumph - just wondered if anyone had had personal experience of it because i started aching and pains around rib cage and shoulders the day after the 1st dose - aches lasted a week. I didn't know if it was steroid reduction/pmr flare-up or the Alendronic acid pill - I had been on the same steroids for 2 weeks with no problems. Initially, I posted on here last week, saying it coincided with a drop in steroids but when I looked at my records, I had still been on the 3 day cycle of 10, 7.5, 7.5 at that point ( but had notionally gone to every day 7.5 in my mind cos I intended carrying on 7.5 from there) - if you see what I mean!?

Since then I have stopped the AA pill and increased my steroids to alternate days 10, 7.5 - intend to continue like that till blood test next Wednesday to see if I am stable.

It's just that the aches were not really like my original symptoms.

All the best

Beev

Hi Beev!

If the pain came on that quickly I'd have assumed it was something to do with the thing that had changed - i.e. the new alendronic acid. One of my GPs is quite unimpressed by the alendronic acid story and according to a review article I read there is certainly little evidence that it does anything positive for people who are not yet demonstrating a reduction in bone density and, in fact, possibly even fractures, so a better approach would be monitor bone density and wait with the alendronic acid until the patient is showing at least signs of progressing osteopenia. The market for the stuff was created by a campaign by the company that developed it in which they got all the equipment (I think by buying a company), did all the surveying of patients and then chose a point on the graphs where they said it was a problem if the density fell below here and there is no evidence that that really is a point where if it's a bit worse and you fall over you'll break something. After all, people fall over and break things even if they haven't got osteoprosis!

I hate being manipulated by big pharma (and politicians - but that's another story ;-) )

cheers,

Eileen

HI all

Is alendronic acid the same as Alendronate Sodium [ Fosomax] ? My doctor has prescribed it for me as they say I have osteoprosis but I am reluctant to take it, I think it has as many warnings and side effects as Prednison. I am wondering if I go to the gym and do weight bearing exercises that if I can reverse the bone loss without more pills.

Andy

Hi odiecass!

Yes, Fosomax is the brand name - much more expensive for our health system to prescribe by name than alendronic acid which is the name of the chemical.

If you google thedoctorsrheum you will find a blog by a rheumatologist which has some interesting links to the best exercise for healthy bones - look under the classification exercise at the righthand side. If you take a wander around the site you will also find some links to articles in the NY Times on both exercise and Fosomax whichmake intersting reading! ;-)

But basically - exercise is not just exercise and it must be weight bearing (i.e. on your feet and sending the result of your feet impacting the floor through your body, not using weights at the gym) to develop bone - walking briskly at least or jogging and jumping rope are thought to be ideal (see above) and they don't need a gym!

You also have to have enough calcium and vit D in your blood for your body to be able to store it in your bones - and PMR is associated with low blood levels of both. It's not known if that is because we aren't absorbing it from our diet, if our diet is deficient (most of us don't take in enough of either in fact however much dairy products we eat) or if the autoimmune aspect of the disease is having some sort of effect. Fosomax must not be taken until any such low level of calcium/vit D has been corrected.

My GP was also reticent about the Fosomax and the downsides so I stopped taking it as I really didn't like it. I've also posted elsewhere about the fact there are review articles and studies suggesting there is no evidence it helps prevent fractures in patients who are not already osteoporitic and have started to get fractures. The developers of Fosomax created an indication for its use in osteopenia - by taking an arbitary level of bone density as being the point at which you should \"treat\" what had, until then, been a non-disease. The greatest loss of bone density when taking steroids is in the first few months and then stabilises. I don't know if there is a link between the level of the steroid dose and the amount of loss of bone density.

Hope this helps, Andy,

cheers,

Eileen

[quote:5b5d28f40c] hate being manipulated by big pharma (and politicians - but that's another story )

cheers,

Eileen.

Hear! Hear! I wanted to join in this as soon as I saw your remarks but I've only just learned how to put in quotes. ( Thank you, Rick. ) As Mrs.O said, you ARE a good teacher and this is a wonderful site. Tea and sympathy and free IT lessons.[/quote:5b5d28f40c]

I obviously haven't done my homework very well; the whole post came up as quotes ( Sorry, Eileen ) but I think the intention is clear. I'll try again next time I want to quote.

It's still freezing here ( Norfolk ) I think I'd stay in Italy if I were you. Betty

Hi Betty - I'm sure Rick would still give you a 9 out of 10, although the quote from the old school reports comes to mind \"must try harder\" :lol:

I think if you'd just clicked the \"quote\" button again after displaying the highlighted text you'd have got 10/10 (says she who didn't have a clue how to do it last week :roll: !!!).

Sorry everyone - shouldn't really be using this forum for a lesson in IT but hey at least it helps us to forget our PMR woes (let alone this horrid weather) for a while! Don't cast any clouts.....keep those muscles well wrapped up still.

MrsO

HI BEV YES I HAVE LEG PAIN AND MUSCLE . DOC TOOK ME OFF ALENDRONIC ACID . BEEN OFF THEM 3 WEEKS AND STILL GOT MUSCLE AND LEG PAIN. DOES ANYONE KNOW HOW LONG BEFORE SIDE EFFECTS SUBSIDE. WOULD NOT TAKE AGAIN, SORRY TO HEAR ABOUT YOUR EXPERIENCE.

Hi Folks

We all know that steroids make us leach calcium like mad.

But, my GP and Rheumatologist when I was first diagnosed with GCA and on a high dosage of steroids, sent me off for a Dexa scan.

These scans cost the NHS about £20 and take about 10 minutes.

They were introduced so that any women past the menopause can be monitored for bone density and if it is going down, preventative measures can be taken.

The reason for this introduction as a preventative measure is that currently a replacement hip or knee op costs in the region of £17 to £18000.

I had the scan and result was 97% (which was good for somebody who was 68 and had a very early menopause at 32). So no treatment necessary, but I was advised to eat pure dairy products, ie Butter unadulterated, cheese again not processed, eggs (free range) cream and full milk (no I can't do the full milk - I have to have semi skimmed.

Yes, I leach calcium, now have calcium grit in the gall bladder - which only caused a problem once. Had pseudo-gout - yes caused by calcium crystals - but treated and hopefully will not return.

I do have osteo-arthritis in my right knee but Glucosamine helps that along.

Walking 45 minutes a day (or more if you can), is advised for stroke patients, heart patients, COPD and a whole host of other illnesses. I just wish I could walk more than two car lengths. Yes, I have a rare side effect, but as I come down it seems to be lessening. So weight bearing exercise is best. The other good exercise to help stop muscle wastage is swimming and swimming uses more calories than any other exercise.

The scans offered at various Chemists or Superstores only do the heel and this is not sufficient - so don't pay for one. Get a proper one on the NHS.

Hope this diatribe helps.

Hi MrsK!

Just a minor point - you don't need to worry about the full cream milk (I can't do that either, tea has to be with semi, my MIL used to save the top of the milk to put in tea and I dug my grave with her by refusing and fetching the bottom of the milk!!). I'm impressed however that someone was bright enough not to tell you the usual rubbish that \"skimmed has more calcium so it's even better\". The truth is that you have to have fat present to be able to absorb the calcium - if you drink skimmed milk you absorb 5% of the calcium present, if you drink semi-skimmed you absorb about 95% which is almost as good as with full-cream. So, no need for that opaque watery stuff!

I'll back the real dairy products line to the hilt: marg and all the other dairy substitutes have all sorts of things in them that are really not good for you. Don't binge on the real stuff and you'll be fine, eat eggs (excellent source of several things we need, especially vit D and most of us with PMR are very low on it) and it has now been shown eating them has no effect on your cholesterol level (all your liver's fault). And to bust another folk myth: if you live north of about Turin (and that is further south than I am) you will NOT get enough vit D from being out in the sun, even without sunscreen on and staying there all day.

And as MrsK has said - demand that dexa scan if you haven't had one. If you don't use it you'll lose it and my husband was denied funding for a new one when the one in his department was on its last legs even though there was a charity offering to pay for one. Some manager turned down his \"business plan\" (well, an accountant probably) - but a broken hip is rather more expensive than a scan for the NHS!

cheers

EileenH

Hi Eileen

Re your second paragraph - I'm confused :? (doesn't take much these days!!!).

Cancer Research UK's line on this is that we should be able to make enough Vitamin D through casual, 'everyday' sun exposures and before the point at which our skin starts to redden or burn.

I was told by a consultant rheumatologist some years ago that I should spend 20 minutes a day out in the sun with at least my arms and face uncovered and without sun lotion.

In view of what you have said with regard to most people with PMR being low in Vit D, I am wondering if perhaps I will ask for my levels to be tested especially in view of the fact that I am barred from taking bone protection meds because of my reduced kidney function.

In the meantime, I will keep eating my regular oily fish and recommend this to all of you as it is high in Vit D (mash those sardine bones and eat those as well - especially good for our bones).

Hope everyone is enjoying good days and that you all get a share of the sunshine that is promised for this weekend on those poor ol' bones!.

[/b]Margaretann[b:ddd52135e9] If you're reading this, just a little tip for you - if you and Jim can get out for a little walk in any sunshine over the weekend, no matter how short, then do so because this exercise is known to lift the depression and produce those feel-good endorphins which, in turn, may also help you to sleep better. Thinking of you both and wishing you well.

MrsO[/b:ddd52135e9]

Hello all

When I had PMR the first time I only had calcium tablets I had a dexa scan in I think 2003/2004 and all was OK With this bout of PMR starting in 2008 I was put on Alendronic acid straight away as my Dr said the new way of thinking was prevention rather than cure No side effects

I had another dexa scan in 2009 and some of my readings were better than before Im not sure when I get another My Dr did say the first time around that checks were only done when you were on 7.5 or above of steroids but I will ask her again

Seem fine on my non enteric coated steroids so far Now on the final run in of my 2 month reduction from 10 to 7.5 so now on 7.5 for a few days so really hoping this will work ( still crossing fingers !!!!)

Actually looking forward to my blood test as mine do seem to fall in line with how I am feeling

Best wishes for a nice sunny weekend to all

Mrs G

Morning MrsO!

Yes, you're right, it is VERY confusing. It has been thought for a long time that 20 mins in the sun a day with enough uncovered skin is adequate. However, they are now beginning to realise that maybe that wasn't so as the numbers of children and young to middle-aged people beginning to demonstrate signs of rickets rises! It is known as the \"English disease\" in some other countries. Some of the problem in Britain is the high number of people of ethnicities with built-in suntans (and they need more sun anyway) and who wear all-enveloping clothes. The skin-cancer lobby with covering up and high factor sun-creams adds to this problem - although I hasten to add that risking skin cancer is not a good idea and I don't do sunbathing! Some groups are adamant that use of suncream has no effect, others disagree. I don't know!

In addition, a further attack, if you like, on our dietary vit D was the insistence that eggs were bad for your cholesterol. I've always been part of the lobby that said dietary cholesterol per se has very little to do with blood cholesterol levels - your liver manufactures it and that is the new mantra. By removing eggs from the British diet that also removed a good source of vit D in the form of the yolks. Then there is the anti-cakes attitude - 3 eggs in a Victoria sandwich, for example. Lots of relatively small changes to the diet have reduced the amount we eat.

Be that as it may, it is now known that the sun, skin and vit D story also has a lot to do with the angle of the sun's rays striking the earth. The best effect will be achieved at the equator where the sun is right above, the lowest at the poles. Calculations have worked out that north of the latitude that is about Turin level (can't remember what it is offhand) the angle of incidence of the sun's rays is too shallow to have a big effect and you'd need to be outside with few clothes on for most of the day! Not a nice thought! And the further north you go, the worse it is, obviously.

It is now being noticed that many people with autoimmune diseases are showing low blood levels of vit D and calcium (I wasn't surprised mine was low as I do not eat flour which has added calcium due to my wheat allergy, and it IS an allergy, I get hives and a nasty rash) but it's not known which comes first. These low levels must be corrected BEFORE treatment with alendronic acid as it encourages uptake by the bones and that will lower the blood level even further - but how many of us had our bloods done, I wonder. And, to go even further, it is now thought that not only the amount we need in our body should be higher but we also need much more in our diet to get to that level.

So there you are - this is the information I have found during some pretty wide reading about fairly recent studies, most of it has appeared in the last year or so. Does that help?

must go to the shops before they run out of semi-skimmed milk!

EileenH

MrsG and Eileen

Just to let you know I have a Dexa scan every year my GP reminds me.

So now four years later - still holding at 97%.

Your GP, is incorrect with regards to who gets a Dexa scan. Any women past the menopause and nearing 60 is entitled to ask for one. It was not just introduced for people who are long term steroid users.

If and when I get the time I will have a read of the NHS Charter again.

For cynics on the dairy products, take a carton of not really butter or margarine and stick it in the garage - three weeks later - no mould. Stick the real stuff in the garage - mouldy within days. Same with other processed stuff.

And has anybody noticed, bottled water which has taken 10 thousand years to filter through rocks and is so pure - has a 'best before' date on it!!

Good luck all in our strange journey called 'life'.

Me, I am off to Scotland - yippee.