Ale demonic acid

[margiebell4]

I had a DEXA scan last week and was told by the lady who did the scan that my bone density was normal but because I am taking prednisolone (I have been on it for 6 weeks) I need to start taking AA. After reading the Living with PMR & GCA booklet I am not sure I want to. What are people's views/experiences about this?

[margiebell4]

Sorry, predictive text changed the title it should be Alendronic Acid!

[DorsetLady PMRGCAuk volunteer in reply to margiebell4]

Some would say you were right the first time!

Although I have to admit that I have never had any problems with AA. Mind I have got the constitution of an ox according to my late hubby! He was always full of compliments.

On a more serious note, I am in the group that is prone to osteoporosis (hysterectomy at 37 blah, blah, blah), and having seen my mother struggle after she fell and broke her hip, and being a carer for said husband at time of diagnosis I was not prepared to take the risk of broken bones.

Others I'm sure will give their experiences, good and bad. As we always say, not everybody reacts the same to certain drugs, so sometimes, you just have to try and see what happens. Good luck in whatever way you chose to go, DL

[margiebell4 in reply to DorsetLady]

Thanks DL yes I did have a chuckle when I saw what it had been changed to!

[PMRpro Ambassador in reply to margiebell4]

I agree with DL - I thought how appropriate!

[PMRandRA in reply to margiebell4]

I haven't heard of this med. (In either guise)

[PMRpro Ambassador]

I have had PMR for 10 years, have been on pred for 6 years. When I was first given the pred I was also handed a prescription for AA and took 4 tablets before going to discuss it with a different GP in the practice after doing a lot of research. He agreed with me that at least I should wait until I had had a dexascan as the most recent opinions were that maybe it wasn't as innocent as the pharmaceutical company were suggesting, particularly for longer term use.

I had a dexascan about 3 months into taking 15mg pred and another a couple of years ago. They were done on different machines so cannot be compared directly - but the second was essentially no different from the original after nearly 4 years of taking pred. Neither had readings that would suggest a need for bone density protective medication if taken as a stand-alone. During that 4 years I was on 10mg or more of pred for most of the time and for several months was on 20mg Medrol.

The US drug monitoring agency, the FDA, has recommended that AA should not be given for more than 5 years at a time without a break in therapy. This is to try to avoid the more serious side effects which are much more likely to occur after 5 years of use. Had I continued to take the AA originally I would now have had to stop taking it because of the time involved. In fact, I did not need it for at least 4 of those years so that hasn't been a problem and since the last dexascan I have been on a much lower dose of pred. When I have my next dexascan the question will be reviewed again: if I need to take anything more than calcium and vit D that will be considered - and 5 years of AA remains an option. Had I taken it prophylactically it wouldn't have been. The mechanism of how it works is that it PREVENTS a deterioration in bone density, it does NOT actively build bone and INCREASE density so had I taken it I would be unlikely to have better bone density than I have anyway.

You have had your baseline dexascan, in your place I would now wait for the repeat in 2 years time - if your bone density has deteriorated you can take action then.

I now live in Italy - where there is not the knee-jerk reaction of handing out all manner of drugs to combat the possible side effects of pred. We get pred and calcium/vit D alongside our pred and are given a dexascan as appropriate. I have to say - I am heartily glad I do not have the problem of arguing my point!

[margiebell4 in reply to PMRpro]

Thank you, that's really helpful. Do you get vitamin D and calcium in tablet form and is it something I should have on prescription? I'm going to be speaking to my doctor about this on Monday. I'm also wondering if I should get a Prescription Prepayment Certificate

[PMRpro Ambassador in reply to margiebell4]

Yes and yes and probably!

In the UK they are Adcal or Calceos I think but you should be given them on prescription. If one doesn't agree with you ask to try another - though why calcium tablets should disagree with anyone I don't understand!

You are a young thing for PMR then? Prescriptions are free after 60! I had a PPC though when I lived in the UK but usually got a 3 month one, got stocks (the most the GP would give me, some are very kind) the week before it expired and then bought the next certificate when I had run out of the stocks. They are worth it for 5 or more prescriptions in a 3 month period so it depends how much your GP has put you on and what else you need.

[margiebell4 in reply to PMRpro]

Thank you, yes I'm very young! (55). My doctor has been prescribing one month at a time so far. I'll ask her on Monday. Am I correct in thinking that doctors are not supposed to prescribe too many on one prescription because of the cost to the NHS?

[PMRpro Ambassador in reply to margiebell4]

If that is the case it doesn't work - the NHS pays the same dispensing fee whether there is one pack or 5 packs on the script! My cousin needs thyroxine for life - her GP would only give out 1 pack at a time, even if she would be away on holiday when the pack ran out. Sheer stupidity - same as the concept that enteric coated pred is too expensive so they should use ordinary pred plus omeprazole. The two sorts of pred are pennies different in price now so it doubles the price of the drugs and costs 2 dispensing fees.

The trouble is the accountants don't know how the system works - they only see the price of the medication and not what hides behind. But if that is how your GP works - yes, PPC! Some of them think that is unfair too

In fairness though - they are so used to monitoring patients on pred so they don't stay on it too long and they don't get the idea that PMR isn't a case of a few weeks of pred and then stop. Be careful your GP doesn't try to rush you off pred - after 6 weeks it is fair enough to try a reduction but if you areon 15mg definitely not more than 2.5mg drop and preferably 1mg at a time.

I was only 51 when my PMR started - you're not that young!! Did you have any difficulty getting the diagnosis?

[margiebell4 in reply to PMRpro]

I just liked you thinking I was young!

I have been fortunate so far. I was diagnosed within months of symptoms starting and my doctor, who I is new to me, said last week that I should reduce to 12.5. When I explained that I had been on this site and would like to reduce more gradually she suggested 1mg a month. I did this on Tuesday and have had no problems.

[PMRpro Ambassador in reply to margiebell4]

Hallelujah!!!!!!

[PMRandRA in reply to margiebell4]

My Calcium/Vit D combi is called Accrete (a relative of concrete perhaps?) Any brand is available on prescription although some meds such as Aspirin 75mg are cheaper over the counter.

There are several lifetime ailments which will qualify you for free meds for life. I can't remember them all but Hypothyroid, Asthma and Diabetes are three that come to mind. You will find the rest online. I have worked out a method for getting more meds in hand. Our surgery allows re prescription 2 weeks before the 2 months is up. so after 4 months, I have 1 packet extra. After a year, I am 3 packs ahead. Right now, I have so many pills I am not ordering. to the consternation of my Doc, so I had to spill the beans.

I hope that all makes sense, pred scrambles the brain as you all know!

[DorsetLady PMRGCAuk volunteer]

Hi,

as most things in life, prescriptions are scrutinised more carefully than they used to be, now that most surgeries have their own budgets to control. When I was your age I was on 5 tablets for various things, and even allowing for a kindly GP who gave me two months at a time still found it was cheaper to buy a PPC annually; I guess even with the relative increases in both charges it would still be applicable today. Easy enough to work out...even on Pred!

[suzy1959]

PMRpro, your friend on Thyroxine should be able to get all her prescriptions free. I am on that and therefore have a medical exemption certificate, so pay nothing. I have been pretty grateful to have it considering how many drugs I am now on! I am also lucky that my GP gives me prescriptions for 2 months' worth of pills everytime !

[PMRpro Ambassador in reply to suzy1959]

This was a LONG time ago - but yes, it was less the fact it cost but more the total inconvenience of having to request the prescription every month (they were awkward and wouldn't do it automatically) and the fight she had every time they went away trying to get extra or get it early. It wasn't as if she was ever NOT going to need it!

[mega in reply to suzy1959]

Very similar with me, Suzy. I had to have a mastectomy when I was under 60 and had to pay for the Tamoxifen myself. I had previously had two rounds of treatment for a very overactive Thyroid which was brought under control by the treatment so I didn't need Thyroxine. A couple of years later the Thyroid had deteriorated to such an extent that I was started on a low dose of Thyroxine and, lo and behold, all my medications became 'free'.

Also like you, I am able to get two months' supply of any long-term meds. (again, quite a few!) and what a difference it makes.

[PMRandRA in reply to mega]

Hi Mega, Thyroxine or Levothyroxene as it is now known isn't used for Hyperthyroid or overactive thyroid at all. It is only used for Hypothyroid or underactive thyroid.

Also, see if you can reorder your meds two weeks before they are due so you can build up a reserve. Naughty but worth it for convenience.

[PMRpro Ambassador in reply to PMRandRA]

It is not uncommon for hyperactive thyroid therapy which first achieves normal production to later lead to hypothyroidism as the remaining tissue deteriorates - and I understood that to be what happened to Mega.

[PMRandRA in reply to PMRpro]

That is true PMRpro. However I read that Mega was a bit bewildered because she had to pay for the treatment when Hyperthyroid - (*Thyroid which was brought under control by the treatment so I didn't need Thyroxine. A couple of years later the Thyroid had deteriorated to such an extent that I was started on a low dose of Thyroxine and, lo and behold, all my medications became 'free'*). Yet Mega wouldn't have been given Thyroxine if she was Hyperthyroid but was as soon as she became Hypothyroid.

I may have read the post incorrectly and apologise if I inadvertantly did and especially if anyone was upset.

[Celtic PMRGCAuk volunteer]

Margie, as your DEXA scan has shown normal bone density, I echo PMRpro's advice to wait for a repeat DEXA in a couple of years time to see how your bone density scores are then before considering whether to take AA. I am much older than you and my bone density hardly changed throughout 6+ years on steroids starting at 40mg daily. I wasn't even prescribed calcium + Vit D due to a misunderstanding between my GP and my rheumy, I did, however, have a good daily intake of dietary calcium, by way of milk, yoghurt, cheese, plus several helpings of oily fish a week - excellent for our bones.

[margiebell4 in reply to Celtic]

Thank you. This support from everyone is great. X

[Hidden]

My visit to the Doctors this last week came with new prescriptions for VitD /Calcium -Calcichew Tabs Lemon flavour, quite pleasant?? and the AA. Read the instructions of how to take the AA and was a little perturbed at the palava needed to take them on top of the pro's and con's on taking them... think I too will wait a while? Am I also right in believing that diet and what you eat i.e. dairy products are not to be avoided? Read somewhere that diet etc has never had a detrimental effect on PMR/GCA sufferers?

[PMRpro Ambassador in reply to Hidden]

It depends on the person - some people find that omitting some things makes them feel better. Adding anti-inflammatory foods helps others. I almost don't eat carbs - I've lost weight and others have found by cutting carbs drastically they haven't put on weight with pred.

[Parijm]

Right from day 1 my prescription (no charge) was for daily Pred 30mg and AA 10mg. Also to take calcium which I paid for. A year on I asked Dr for bone density scan, since posts here led me to question why take AA if not necessary. My result is borderline..am advised to continue on AA for 5 yrs, which must mean for another 4 years as I see 5 yrs is total for being on AA at one time. Recommended another DXA in 3 yrs. Daily AA was a faff with all the palarva involved in taking 1st thing, not lying down (or going back to bed!) etc. At least AA weekly an improvement. Interested to learn about VitD, calcium. Now I take Calcichew D3 & aim to include dairy products, oily fish etc in diet but I know my wine consumption may not help. I am always looking for information on nutrition and eating well, preferably non-biased, and would welcome advice. What is not good about AA? Bearing in mind I would avoid medication if I could.

[mousebear]

I have so far refused AA, GP offered it asap diagnosed 2 months ago (I'm 51). I had to request a DEXA, which have just had, now await GP's view of results. I'm trying to decipher it myself beforehand can anyone help:

Z scores: -0.4 spine (normal) left hip -0.4 (osteopenia) right hip 0.1 (normal), mean -0.2 (oesteopenia)

That seemed pretty good, but am new to this, but what do you all think? Also, do GPs receive a radiologists report (I just got the actual scan figures, no interpretation, from the technician)? I'm worried if left to interpret it, GP is so risk adverse (ie my having to insist on a scan, despite my age) that she'll see words 'oesteopenia' and react, whereas I've read this term is a bit of a con (big pharma?) and a normal sign of aging. I've reduced pred with no problem to 10 mg in two months and want to wait to visit Prof Dasgupta's clinic in July. Thoughts please?

BTW Margiebelle4, 55 IS young! I'm with you and just want the doctor to realise what a blow all this diagnosis is at our age!! They don't seem to take account of this, that alone has rocket fired me into a kind of 'feeling elderly' depressed mindset that am trying to get out of now...

[PMRpro Ambassador in reply to mousebear]

The Z-scores are fairly meaningless - it is the T-scores that matter. Osteopenia is a T-score of -1 to -2.5, normal is greater than -1 and osteoporosis is lower than -2.5

If your T-score had been -2.4 that is osteopeneic and nearly osteoporitic so you could justify being told to take something. A T-score of -1.1 however is also osteopeneic but so far away there is no reason to say you need anything.

I have osteopeneic values - -1.3 in spine and -0.7 in hip. No-one has suggested taking anything other than calcium and vit D. But then - I live in Italy and while they care about osteoporosis they don't hand out unnecessary medications!

There was effectively no change in the reading over nearly 4 years of pred, mostly at above 10mg. I took 4 tablets of AA before doing my research. By no means everyone loses bone density when on pred - and you may have been osteoporitic before anyway. You need a dexascan within the first few months of pred - and another a couple of years later. THEN they can dictate whether you need more medication.

[mousebear in reply to PMRpro]

Hi PMR pro, apologies, I thought it was Z score that counted. T scores (same order) are -1.0, -1.4, -0.8, -1.1. Is that pretty far from needing meds at this point, in your view? I'm just trying to get clarity before facin GP again, many thanks.

[PMRpro Ambassador in reply to mousebear]

They are fairly similar to mine - I have one vertebra that is low density but the others and my hips are fine with normal readings. Your left hip is osteopeneic but not severely so and the other is perfectly normal. In your place I wouldn't take AA now, just calcium and vit d and try to walk as much as you can. Review in a couple of years would be the normal procedure.

There is little real evidence that slightly lowered bone density is the actual cause of fractures - people with normal bone density get fractures, people with low bone density don't. There are loads of other things to do to avoid hip fractures - good lighting where needed, avoiding having trailing cables, slippery floor mats or slippery floors, pets that hug your ankles, keeping muscle tone good, drinking plenty of water and so on. Dehydration and low vit D are big risk factors for falls! Oh yes - and wear shoes in the house not sloppy slippers!

[mousebear in reply to PMRpro]

Thanks so much, this is invaluable!

[margiebell4 in reply to mousebear]

I feel exactly the same.

[jinasc]

I had GCA and was 68 at the time. I was 32 when I had a hysterectomy - so early menopause. I was on pred for 5 years and then the GCA went into remission.

I had a Dexa scan six months after starting pred as a base line. Bones density was 97%. I had a scan every two years whilst on pred - no change at all.

It is a personal decision, but I would look at the National Osteporosis site and read up on it.

By the way, what did you think about the booklet?

[mousebear in reply to jinasc]

Hi Sambucca, sorry, which booklet?

[PMRpro Ambassador in reply to mousebear]

Mix-up between margiebell who started the thread and mentioned the "Living with PMR and GCA" booklet and mousebear I think!

[jinasc in reply to PMRpro]

You are not wrong about that - thank you

[margiebell4 in reply to jinasc]

The booklet is fantastic. It's useful for family and friends to read too.

[Hidden]

I think you were correct with the title first time, sorry I am in a cynical mood. Could not take the stuff, gave me more pains than I started with! But we are all different. My mothering law took it for about ten years, until l told her to ask the doc if she ciuld stop taking it.

[Cinka]

Where can I get PMR/GCA booklet, please?