Alendronic Acid 70 mg

[Stroppymoo]

Considering some of the posts I've read I'm starting to get scared of the above drug. I asked my GP several months ago if I really have to take it. His response was that it 'locks in the Ical-D3' which I take six days a week, along with my steroids. The AA says about standing or sitting upright to prevent being sick. What I want to know is why is it so important not to be sick? Can the AA burn your mouth to tummy tube?

[HeronNS]

Have a look at the side effects listed here. This will explain the importance of following instructions about how to take AA pills to the letter:

drugs.webmd.boots.com/drugs...

Have you had a bone density (DXA) scan?

[piglette]

As HeronNS says have you had a Dexascan? This will give a reading of your bone density and whether you need a drug like Alendronic Acid. If you do not have bone density problems, in my opinion anyway I would not take AA.

[Stroppymoo in reply to piglette]

I had a blood test last July and no cancer, white cells normal, red bloods normal, c reactive proteins almost normal and not prediabetic anymore. BUT the steroids and cause brittle bones, hence the AA (I think). My pred reduction is now up to me, and haven't seen GP about pmr since last August. Foggy brain is one thing that bothers me though. Hope that will go away eventually as I'm studying nvq level 2 in health and social care.

[Stroppymoo in reply to Stroppymoo]

Forgot to say, bone density ok too.

[piglette in reply to Stroppymoo]

One of the side effects of steroids can be brittle bones, but like the other eighty odd side effects it may not happen. That is why you need to get a bone scan, ie Dexascan. Are you saying you have had one and your bone density is OK? If so personally I would think twice about taking AA. If you have not had a scan you should ask your GP for one.

It is also a good idea to have various blood tests every so often, eg U & E, Liver, Glucose, Full Blood Test, plus others. Also CRP and ESR more often. I just book my own blood tests with the nurse.

[HeronNS in reply to Stroppymoo]

I suggest that, unlike the bisphosphonates, steroids do not cause "brittle" bones. They may cause loss of bone density, but brittle bones are what happen when new bone is laid on top of old bone, as with bisphosphonates, etc, which stop proper bone remodelling. The bone thinning caused by steroids is better dealt with through nutrition and exercise to encourage healthy bone remodelling (i.e. removal of old bone and replacement with new).

[Griggser]

I've recently stopped taking the alendronic acid as I felt after 3 years it was time for a rest and never having had a dexascan. My rheumy didn't seem too happy but it's my choice. If he mentions it again I'll say I want a dexascan first.

[PMRpro Ambassador in reply to Griggser]

I have been told that the most recent advice is not to take it for more than a couple of years - though I haven't seen it in writing.

[Suetum]

I was on Alendronic (I am Osteopenia) but it made me feel awful on the day I took it. Had another Dexa scan which showed that since I have been taking prednisilone it has got worse so now have 6 monthly injections which will continue for three years. Oesteoporosis is not something I want sometimes it feels like being between a rock and a hard place!

[Marcy47]

I told my Dr I wasn't happy taking AA after being on it for over a year. She said I could stop taking it and she referred me for a Dexascan, which I am having tomorrow. I will see her again for the results soon, see what happens then.

[Jackoh]

I only took AA twice as I read about the side effects and also was due to have considerable dental work done.

I did therefore ask for a Dexascan and found all my readings were fine. This I believe I can have repeated after two year gap just to check there hasn't been any deterioration.

Best wishes

Jackie

[karools16]

AA didn't agree with me, so I stopped it. I am now on Ibandronic Acid Mylan, 1 a month, and no problems. You HAVE to do exactly what the instruction says...NO LYING DOWN for the first hour!

[Robert17]

After a Dexa scan I was pronounced "border line oesteoporosis" and started taking AA. I have had no problems with it but I am conscious of other comments on this forum. It has been over 4 years for me and when I mentioned this to my GP recently she told me that after 5 years she would recommend stopping it anyway.

[Hidden]

I don't usually comment on the AA debate, as it is a contentious issue.

I've had PMR for 5years & my Dexa Scan showed Osteopenia (my Mum had Osteoporosis) so l took my AA, never the easiest thing to take but you all know that.

However, following my Chemo for Breast Cancer l was taken off AA & put on a 6monthly Zolendronic Infusion by my Oncologist as following research it's been shown to help prevent Breast Cancer reoccurring in the bones which my type of BC is prone to do, so in some ways I'm kind of glad I was already on AA as it might prove beneficial in the long term.

I waiting for a date now for my next Dexa Scan so it will be interesting to see if there is any improvement or not.

[altywhite]

Hi Stroppymoo,

I have Temporal arteritis, not PMR, am down to 9.5mg pred and have been on AA for about 18 months. I have just made the decision to stop taking it after some of the comments on here prompted me to investigate further. I typed 'Fosamax FDA Warning' into Google (Fosamax is the American AA) and did a lot of reading. It is quite scary really but I decided that I wasn't at risk of some of the things as I have been on it for less that 2 years. But thinking about it....I have developed GORD in the last 2 years and have had some very vague musculoskeletal aches and pains...also cramping legs and tingling toes, which suggests low calcium!!

To top it all I have needed a tooth extraction this week which my dentist was very twitchy about, to the extent of giving me a second lot of antibiotics and giving me his own mobile number should I be worried that all is not well!!!! But it was more urgent to get the tooth out than wait for a rheumy consult...which is pretty hard to get these days!!!

So...I will no longer take the AA and will just stick with the D3 and calcium. There is something else recommended to take too but I will have to look back on posts to find out what that is. I am apparently due a Dxa scan in July.

In answer to one of your questions AA is very irritable to the oesophagus, that's why you have to take it with plenty of water and remain upright. Oh and don't have anything to eat or drink for at least 30 minutes as that alters the effectiveness.

It's a difficult one this because everyone is different and all the drugs affect people differently. The above is my personal choice and I wouldn't presume to advise anyone what to do on this subject. I hope you go on OK.

[Stroppymoo in reply to altywhite]

Thanks found the comment about oesophagus very interesting. Also, heard you cannot have root canal or extractions for 10 years AFTER taking AA. Will be asking doc about dexa scan on next visit.

[PMRpro Ambassador in reply to Stroppymoo]

I've never heard that - but there is no real logic to saying "for 10 years" as AA almost certainly remains in the bone longer than that and you will probably take it to the grave with you!

There are dentists who will do such things - but many are very reluctant and the risks are higher than if you haven't had it. The advice is to have all major dental procedures that appear may be necessary soon BEFORE you start on AA. But tooth problems don't usually advertise themselves in advance do they!

[Stroppymoo in reply to PMRpro]

I just don't know what the risks are! Have certainly got many questions for gp next week, only got a 5 minute appointment though AND he'll keep looking at his watch.

[PMRpro Ambassador in reply to Stroppymoo]

5 min isn't enough for ANY patient - and certainly not for a complex one as we are.

Suggest gently that if he didn't waste time looking at his watch he'd actually have more time for his patients...

[Stroppymoo in reply to PMRpro]

I'll have a dig. Luckily I've got the answers to several of those questions I was going to ask in the last 48 hours from this splendid website.

[altywhite in reply to Stroppymoo]

I had all my dental checks before staring the AA but you can't account for abcesses and other dental problems. I had my tooth out 2 weeks ago and saw the dentist yesterday...he's not particularly happy at the healing rate but I suppose that's down to the pred. AA has a half life of 10 years but as PMRpro says it probably stays with you forever!

[PMRpro Ambassador in reply to altywhite]

As I understood the paper - it is still present after 10 years, but it had only been in widespread use for less than 15 years at the time. In the data sheet it says it is "estimated that the biological half-life EXCEEDS 10 years". By how much we ask?????? It is firmly bound in the bones, that is the point.

medicines.org.uk/emc/medici...

If you read this and look at the nasty adverse effects they keep saying "rare" - but they also have the paragraph about reporting adverse effects:

"Reporting suspected adverse reactions after authorisation of the medicinal product is important. It allows continued monitoring of the benefit/risk balance of the medicinal product. Healthcare professionals are asked to report any suspected adverse reactions via the Yellow Card Scheme; website: mhra.gov.uk/yellowcard"

I've met problems with that - the patient has an adverse effect and the doctor insists it need not be reported as it is a "known effect". That isn't the point - it is the yellow card scheme that establishes the true rate of adverse events once a drug is in widespread use. The clinical trial populations are just hundreds, with a small number of adverse events appearing. The bigger the population, the more accurate the figure. It is in use in millions now.

I had a tooth out while on pred - absolutely no problems with healing. Maybe I'm just lucky. Except I did get the short straw after a few days of a quinolone antibiotic!

[Stroppymoo in reply to PMRpro]

Just read. A common side effect being pain. Can't win.

[PMRpro Ambassador]

I have been on pred for over 7 years - have only ever taken 4 tablets of AA and my bone density has only fallen very slightly in that time. I have always taken the calcium and vit D.

The guidelines say you should have a dexascan at the outset to see what your bone density is like. If it is OK you take just calcium and vit D and have the scan repeated in 2 years. The FDA have said for some years it should not be used for more than 5 years continuously because of the potential longterm adverse effects. It is also essential that your calcium and vit D levels are monitored and put right if you are depleted - because the AA will only work if they are in the right range.

The staying upright after taking it and the relatively large volume of water you need to drink is to avoid the tablet getting stuck on the way down or any reflux after taking it. It can irritate the lining of the gullet but it was said that people who had this problem hadn't been taking the tablet the way they are told you. It is important to do it the way they say for that reason.

[Stroppymoo in reply to PMRpro]

I have taken it correctly and thanks to this group have less questions for doc. Wonder how a dexa scan is done though?

[Hidden in reply to Stroppymoo]

nhs.uk/conditions/DEXA-scan...

[PMRpro Ambassador in reply to Stroppymoo]

You said on another thread you had a load of questions for a 5 minute appointment - why don't you write a post on here with your numbered questions and we'll answer all we can to save time at the doc. Preferably in a new thread so plenty of people see it