Androlic Acid????

Hello Maureen

I can't speak from personal experience of Alendronic Acid. It was never suggested to me at PMR/GCA diagnosis although many patients have had it prescribed routinely alongside their steroids. However, unless you are already suffering from osteoporosis or have had a bone density scan (DEXA) showing thinning bones, then you may not need AA. It is therefore important to ask for a DEXA at the outset of PMR, even if it is only to get a baseline reading as guidance for the future. With hindsight I am relieved that it wasn't suggested for me, having now read all the latest guidelines surrounding its use. For instance, patients must have a break from it after 5 years as there is a risk of osteonecrosis to the jaw. Dentists prefer to refer patients on AA to hospital for any extractions because of this risk and it has even been recommended that any proposed dental work is carried out before taking it.

During my years on steroids, I was diagnosed with cataracts and high eye pressures (am being treated for Glaucoma). Because of GCA, I was entitled to two eye tests a year and, in fact, was told by my optician to come in whenever I felt concerned, adding that all he had to do was fill in a form to claim for me. It is definitely a good idea to let your optician know that you are taking steroids, mentioning that as someone with PMR you are at risk of contracting GCA, so yes regular eye tests are wise.

hi maureen

I was advised by my support group not to take it as the long term effects are horrendous, and it is not necessary if you dont have osteoporosis,so I would also advise a bone scan. My consultant is going to give me regular bone scans. Also I dont take the stomach tablet " OMEPRAZOLE" as they also have awful long term effects,so I take 2 ZANTAC tablets daily. My eyes are fine at the moment but I have only been on steroids sinceJanuary.

I wish you the best of luck

gladys

Hello Maureen, AA is prescribed to post menopausal women. I take mine on a Wednesday! I take it with the copious amounts of water that we are told to drink and then have my shower. By the time I have finished with that, the 30 minutes or so have passed, I then take the next lot of pills!! I don't have osteoporosis but am taking the AA as a preventative measure. Have you read the insert that came with your AA? It gives you a lot of info. If you take other drugs with it, it isn't as effective and if you take it lying down, it can lodge in the wall of your oesophagus and cause an ulcer.

If you have wind etc., try eating a live yoghurt every day or so.

Regarding your eyes, your Optometrist should ask you what drugs you are on as a matter of course, so, yes, you should go and see him again.

I went to see my dentist before I started taking the AA.

Gladys, I had forgotten about Omeprazole! I have been prescribed that but rarely take it. I have found that I only suffer from heartburn or whatever if I don't drink enough water with my drugs and more than one of them tell me to drink copious amounts!

Good Morning Mrs O

Thank you for your quick response - where would I be without you and Eileen - I am always so grateful for your advice.

My father suffered from Glucoma(He was a type one diabetic) so I can claim free eye tests as I am over 40 yrs old, but not sure if that is only once a year, I will have to check with my optician. I actually spoke to his receptionist when I was first diagnosed with PMR and explained I was on steroids but she said that didn't matter (neither the illness or the medication) I will ring them later today when I finish work and ask to speak to the Optician himself.

As far as the DEXA is concerned I was not offered one by my Doctor, but I have had an MRI scan which shows wear and tear on parts of my spine that shouldn't be there at my age and also something to do with my sciatic nerve, but I had sciatia once many years ago and the pain I am in when walking is very different so I think this pain is due to my PMR. I really find not being able to walk very far so debilitating and depressing!

I just hope there are some fellow suffers out there that can help with Androlic Acid side effects - It always helps if you know you are not alone with what you are suffering.

Once again thanks for your help and I hope you are keeping well.

Take Care

If you have ANY gastric problems when taking AA you need to report it. I didn't take it either - and after over 3 years on pred, mostly at over 10mg/day my bone density is almost the same as it was at the beginning. I had a dexascan done about 2 months into pred, the rheumy said then that the majority of bone density loss occurs in the first 3 months and at the higher doses. No AA was necessary she felt. Knowing what I know now I'd be very sceptical about taking it - but that is another story. I disapprove strongly of it being handed out like sweeties without good reason - and the only way you know is after a bone density scan with a dexa scanner.

Omeprazole - now there is another thing: why are they so adamant AA is needed for pred when omeprazole also causes osteoporosis because it prevents the body absorbing calcium from the gut and they hand out pred plus omeprazole! It is all not very well thought out.

When you take pred you need at least annual visits to the optometrist to get eye pressures done (the glaucoma test). Pred can cause raised eye pressure - left without treatment that can lead to glaucoma (that is raised pressure plus other signs of damage). Eye drops are usually enough to prevent that.

Lots of people find their eyes change when on pred - my glasses have been used at many different nose positions in the last 4 years! Don't go mad and buy expensive new specs though - it will change again!

Hello Mrs Mop and Gladys

I am post menopausal so perhaps that is why he advised the AA, but he never offered me a DEXA scan

I too drink copious amounts of water and take the tablet on an empty stomach then I have my breakfast and take the rest of my medication. I cannot try yoghurt live or otherwise as I really cannot stand the stuff!!!!!!!

I just don't like the fact that it seems to be irritating my stomach and I worry in e it may be taking the lining off parts of my intestine and could cause ulcerative colitius - as the symptoms are very similar to what a friend of mine has, all be it mine are no where near as severe as hers as she does suffer from ulcerative colitius, but she hasn't got PMR. I feel the symptoms I am having must be down to the AA as they are only first thing in the morning - usually when I just get out of bed - and they only occur one or two days after I have taken the AA

Will have to look at the leaflet again when I get home -I was given the AA and the pred at the same time so I cannot remember if I read the AA leaflet - I know I read the pred one and that was bad enough!!

Thanks for your help.

Hi Eileen

Thanks for your advice - I will speak to my doctor when I see him on the 31st - might not take next Sundays and the one after that in view of the responses I have been getting - do you know if it is dangerous to just stop taking AA?

When you get time could you please tell me the "other story" you mentioned when speaking about taking AA

I will ring my pharmacy when I leave work later today I am sure the pharmacist should know if you can just stop taking it.

Once again thanks for your help - I am so grateful for all the advice I have been given.

Take Care

What doctor are you seeing Maureen? Is it just your GP or has he referred you to a Specialist?

Ask for a Dexa scan!

Oh and yoghurt, I couldn't stand it but have got past that now and have recently changed to eating Greek yoghurt, which is much less sour and you can add honey or fruit to it. You would be surprised at the difference it makes to your digestive system.

Thanks Mrs Mop - I will definetly think about it - and it is my GP who is treating me - I have never seen a specialist, although I must admit my GP is really a lovely man and cant do enough for his patients - but I have got more info off this forum.......................

Will let everyone know how I get on

Maureen - unlike Pred it is fine to just stop AA if necessary, however it will not clear from your system for ages (another downside!) If your DEXA scan reveals bone thinning and the need for bone protection meds, then there are many others available - for instance a friend who couldn't tolerate AA is now having a drug called Denusomab by injection and is fine.

Omeprazole and its relative, Lansoprazole, prescribed by my GP had horrendous effects on my bowel plus stomach pain and was given short shrift within days by my rheumy at my first visit. Shame you can't eat 'live' yoghurt as it proved a brilliant stomach protector for me throughout my years on steroids. I had it mixed into my muesli, chopped applie and Manuka honey each morning before taking the steroids. Still my favourite breakfast!

My favourite 'tipple' is a glass of warm water with a few squeezes of fresh lemon juice first thing - excellent for helping digestive problems as the acid turns alkaline in the body.

Yes - I love yoghurt and eat any form of the natural version, adding my own fruit, but even I find a few brands downright sour though it isn't as bad as it used to be. But Greek is a whole different matter - it's more like eating cream!

No - not dangerous at all to stop taking AA suddenly and it would be interesting to see if you still get the problems! I'm a great advocate of associating any such changes with something different in the run up - and changing that to see if it prevents the problem which gives a bit more evidence to the GP.

Don't worry too much about it causing ulcerative colitis - that is an autoimmune disease like PMR and is thought to have a genetic association too.

If you use the search box at the top right hand corner of this page you should be able to find a lot of what has been said by searching alendronic acid and teeth(make sure you spell it right) - we've had several threads about it and it is a massive subject to discuss again! I have nothing against it being used properly: when someone has osteopenia which is getting worse and heading towards osteoporosis and being used after all the appropriate checks have been done and contraindications ruled out. I do object to it being handed out automatically just because you are on pred and the company did a very clever marketing campaign which convinced many doctors it is the best thing since sliced bread.

Eileen

Good afternoon Mrs O and Eileen

Once again your advice is brilliant - you really do deserve a medal for all the help you give to people.

I too drink hot water, I don't like tea or coffee - but with nothing added to it. I also drink cold sparkling water and the occasional glass or 2 of red wine on a Saturday night .................

I think, when I go shopping later this week, I will get some greek yoghurt and try it if it tastes a little like cream and isn't sour or foul smelling.

I also think I will stop the aa for the next two sundays before I see my doctor and see what happens.

Thanks again

Take Care xx

Hello again Mrs O and Eileen

I have just looked at the thread on AA and I cannot believe what I am reading, after going into the discussion forum.

I cannot believe I have been taking this awful drug since last year and was not made aware of the problems it can cause.

On the discussion forum a lot of people have been talking about pain in their legs and not being able to walk since taking the drug, now I know this can be a sign of PMR but I actually told my doctor about this pain and I also said it didn't feel like the PMR pain I had before being diagnosed and nothing has been helping it - I still am having terrible problems with walking both with the pain in my legs and the breathlessness I get and I put the breathlessness down to the fact I cant exercise. I am nearly convinced the pain from walking is down to the AA ( it really isn't like the PMR pain I have) so that is it! Along with all the other side effects I have read I am going to stop taking the AA and take my chances.

Thank you to both of you - I have a feeling you have just saved my life!

Even if I am diagnosed with osteoporosis(have I spelt that right) I wouldn't take this drug

I am supposed to be working this morning but I was so worried with the few side effects that I thought AA was doing to me I have spent most of my time on this forum and am convinced now that it could be causing me more problems than I realised.

Reluctantly I had better do some work - will let you know over the next few days/weeks if I get any better with my walking - although some people on the forum have said it took them ages for the drug to get out of their system and I know Mrs O above said it can take ages - oh well small steps etc and the first one is to come off AA.

Take Care xx