Polymyalgia Rheumatica

Steve, I would be surprised if your DXA shows the need for AA, unless other factors e.g. family history or there are some prescription drugs that can cause loss in bone density. 2mg of pred is less than what your adrenals should be producing anyway. The bulk of your cortisol should be 'natural' by now. I wouldn't think 2mg is likely to compromise your bones, but only my opinion, of course.

Yes, we should all have the dexa early on in the pred journey to establish a base line, but not everyone does. Some are offered it automatically, like me. Some people get one if they ask - but not everyone knows about it, so wouldn't ask. And some ask, and their GP's refuse and patients have to kick up a fuss to get it.

Good luck with the scan. Let us know how you get on.

I had my 1st scan about 2 months after starting steroids and repeated a year later. The 2nd showed a worsening of my osteopenia but it did not require treatment with AA. And I have other negative factors; I'm still on a relatively high dose of steroids and other drugs that cause loss of bone density.

AA and the other drugs of that ilk, should not be prescribed unless there is definite evidence that you need it, I think Mrs E mentioned in an earlier post, it doesn't seem to work as a preventative.

Good luck with the scan.

Margaret

Hi Steve

Unfortunately many people are not aware of the need for a DEXA scan early on in long term steroid treatment in order to have a baseline figure to work on. I was aware and asked both my GP and rheumy if I could have a DEXA but both refused saying that at the time there was a 9 month waiting list anyway. My GP thought my suggestion of having one privately was a good idea! That scan was normal. Two years down the line and following a starting dose of 40mgs Pred, a repeat scan was agreed and this showed osteopenia. A further two years later and on just a tiny steroid dose a further scan revealed me to be still within he osteopenia range and therefore no treatment needed.

With any luck and providing you haven't got a family history of osteoporois, have a diet high in calcium and such things as oily fish, and plenty of weight-bearing exercise such as walking, then hopefully your DEXA will be normal so that you can discontinue the AA. Even people suffering from osteoporosis should have a break from AA after five years anyway according to the latest recommendations.

Good luck and do come back and give us the good news!

My family has no history of osteoporosis. We are decendents of farmers, fishermen and sailors (and land owners), who have led very physically robust lifestyles, so I imagine any genes giving me a tendency to osteo' might have been somewhat thinned out by now (no pun intended).

I should think my adrenals are pumping out cortisol again nicely, by now. I'm certainly not suffering any symptoms of low cortisol.

Will let you know what the DXA shows up. It does seem odd that people are not offered a DXA routinely after starting corticosteroids. Is it expensive? I might be able to find out from a friend, who has worked in the relevent parts of rthe NHS, just what the incentives might be for GP's or rheumatologists to offer this sort of test. With the NHS structures in turmoil from government interference, this sort of question will arise many times, I believe.

Steve: It's sort of in the guidelines for diagnosis and treatment issued by the British Association of Rheumatologists but our experience has been that the only persons who've read them are the rheumatologists involved in drafting them (and us!). The diagnosis is fairly well defined for the majority of patients with criteria to suggest contemplating the dx but many of us don't quite fit - my clinical dx (on symptoms) was fairly classic by the latest recommendations where the age has been reduced to "over 50" but having no abnormal blood tests and, at the time, being under 55 it was missed for about 5 years. But the guidelines say:

"Individuals at high risk of fracture, for example, those aged >65 years and those with a prior fragility fracture should be advised to commence a bisphosphonate with calcium and vitamin D supplementation when starting corticosteroid therapy. These patients do not require measurement of BMD prior to commencement of bone protection (Grade A).

Other individuals should have an adequate intake of calcium and vitamin D (Grade C). We recommend

co-prescription of calcium and vitamin D supplements when starting corticosteroid therapy. Measurement of BMD to assess fracture risk is recommended in these individuals as well. A bone-sparing agent may be indicated if T-score is 1.5 or lower.

Those at the risk of higher cumulative corticosteroid dose due to higher dosing should also be advised to commence bisphosphonates at the time of starting corticosteroids. Please see the Royal College of Physicians’ guidelines on glucocorticoid-induced osteoporosis [22] for details."

So you and I - and (if I remember rightly) MrsO at diagnosis should have had a dexa and calcium and vit D - no bisphosphonates although by the time they got round to it MrsO could have been classified under the high dose group as she had GCA by then. It isn't particularly expensive, MrsK quotes £25 but my husband says he thinks his department reckoned about £75 in their costings (he was head of a Medical Physics department with a dexa scanner in the room opposite his office ;-) ) Here I paid 38 euros towards the cost of mine this year which was done in a private hospital that provides some services for the state sector. But it is an hour and a bit drive and I had to get there. There is an excellent train service there and a bus to the hospital from the station so it isn't difficult.

The problem with dexa scans is there simply aren't enough available in some areas and the machinations of the funding approval were crackers at the time he retired. His scanner was one of the early ones and needed to be replaced so he submitted an application - to cut a long story short, it was turned down despite them having full funding for the machine itself from a charity and it being a replacement meant they already had the staff and the service up and running! All politics. Some GPs are busy trying to save on their practice expenditure - and unless it's high on their tick box priorities you won't get it offered. In some areas the demand led to the waiting times being 9 months or more - and that wasn't allowed so no doubt they were told not to order them to reduce the waiting times. When I had mine the normal waiting time there was 6 to 8 weeks I think - ex-bosses privilege got it done in a few days (we were in the process of moving at the time). There are, of course, the mini scanner things that look at heel density. They'll possibly find the patients who are very osteoporitic - maybe, but I wouldn't guarantee it.

Part of the problem is also the fantastic sales pitch of the makers of Fosomax, the original bisphosphonate, telling a whole generation of gullible medics how wonderful it was and there would never be another fractured NOF (neck of femur) if only they would give all their patients this great pill prophylactically. Like statins and HRT. But don't get me started on statins ;-). Now there are beginning to be reservations about AA - but all too many doctors don't read the upgrades sent to them and remember that story from their training. By the way, the figures collected by the pharma company were on the basis of heel bone density measurements in those mini scanner things - which they developed and handed out to the medics involved in the trials. Mmmmm!

I'm not saying AA should never be used. What I am saying is it shouldn't be handed out like sweeties. Think about what they DO hand you when you get a dx of PMR: pred (which causes bone density loss or BDL in about 45% of patients), a PPI for stomach protection (which can cause BDL), calcium and vit D tablets. Most patients are older and are almost certainly taking medication for hypertension, possibly heart conditions, other conditions. It isn't unusual for patients to have 8-10 or more tablets to take a day. All have potential side effects. That have been anticipated on the basis of a person taking one or possibly two medications at a time. The potential for serious interactions is mind boggling and even worse when a side effect crops up - what do they often do? They had out ANOTHER medication to deal with the symptoms of that side effect! There are some estimates that up to a third of patients, especially the elderly, in hospital are there because of DRUG INTERACTIONS!!

I said on another thread - once younger patients and more men who are still working are appearing on the lists of victims things may change. Though what I see in the media about the NHS at present doesn't encourage me. We said in 2004 when the GPs were offered the option to give up OOH for a bit less money that it was a recipe for disaster - was anyone then listened to? Were they thump!

One is left to feel that if you don't know about your disease yourself you may be left at the side of the road. I'm NOT criticising the NHS per se - most of my family has and still does work in it. It's just the wrong people are in charge - far too many Tescrosebury managers. It isn't a shop and it isn't a factory - there are cuts you could make - mostly in drugs! Best thing that happened to a relation was being taken ill in Spain some years ago. The medic had a fit at the 10+ drugs he was on - stopped them all and started from scratch. He left hospital on 1. The rest had been added to deal with incremental side effects - instead of changing the first one when it didn't agree with him. He was about 87 when he died.

Grrrrr! - Eileen

Hi folks

just wanted to ask if anyone else has dizzy problems with prednisolone, I know that it is one of the side effects but I have been taking it now for over 2 years and I doesn't get any better. At the moment I don't have any specific symptoms of PMR they seem to have gone into remission so I don't know if its because I still taking pred, maybe \i don't need it. I had a blood test at the beggining of June when I last had symptoms, CPR was 17, I had been off pred for a month but had to go back on it. I am currently taking 6 mg a day and will slowly cut them down Wendy

Hi folks

I had a dexa scan a few weeks ago and when eventually the rheumatologist informed of the results she raised merry hell because I had stopped taking AA. I can't get out of her or my GP where I am on the scale re osteoporosis but I have always walked a lot have been reasonably fit, I can still walk 4 miles and above PMR allowing with no family history osteoporosis. I am on currently 5.5 - 6 mg pred daily trying slowly to reduce to about 3mg. I have been here before (on 3mg)but an endochronolgist I saw insisted I should not still be on preds(this was last summer) and I must stop taking them immediately and take hydrocortisoid all that did was make me ill the pmr came back in a big way so I had to go back onto a higher dose and consequently I am still on pred now. I am convinced that if he hadn't interfered (I can't remember what I saw him for) I would have pottered on quite happily and eventually everything would be hunky dory. Wendy

Wendy

I can't quite understand why you can't get your DEXA result from either your rheumy or your GP. I have requested and received exact readings from each of my three DEXA scans. You are on a low steroid dose now and will only need AA or the equivalent if your DEXA has shown thinning of your bones. You need to be aware of that result, so do ask for it.

Of course the "PMR came back in a big way" if whilst on 3mgs of steroids you "stopped taking them immediately" as advised. With your CRP reading of 17, it should have been obvious to the experts that you still had inflammation in your body - the normal reading should be below 5. You will have read sufficient on these forums to now know that the only way to achieve success is to go very slowly with the reductions especially when at the very low doses.

Hi All,

An update n' stuff. I had my DEXA at last, a couple of months ago, though had to chase up my GP for results. My femur head T score was -0.6, so not bad, but my lumbar spine was -1.5, so not so good. But this is, apparently, fairly usual for T1 diabetic men and I've probably had low BMD in my spine for decades. I've decided to discontinue AA anyway, in spite of the low spine score, and simply continue the D3 + calcium. I am unaware of T1 diabetics being treated routinely with bisphosphonates or that there is any evidence that doing so is beneficial to us T1's. Also, my pred is down to 1.5 mg/day and should drop to 1 mg at the end of this month, PMR still permitting. I am aware that even pred as low as 2.5 mg/day can take calcium from the bones to an extent measurable by blood tests. My personal calculation is that I have taken AA for the best part of 3 years and its half life in bone is about 10 years. After 10 years, 50% of what is bonded to my bones now will still be there in 10 years. In 20 years, 25% will still be there. So, assuming AA actually does protect from fractures, I should be well protected for a long time. I just do not like the increased risk, even if quite low, of spontaneous fracturs of my femur caused by AA. I wany any microfractures to heal normally.

Eileen, on the marketing of new drugs I know sales pitches can be, shall we say charitably, imaginative. But I would like to know what were the details of the Phase 3 clinical trials of any bisphosphonate. Sales pitches are not clinical trials. Trials should have included assessment of clinical worth compared with placebos and other established therapies. Do you have any info on this? I'd definitly love to see something tangible on use in T1 diabetics on pred To my mind, an assumption has been made on my behalf that as a T1 I definitly need bisphosphonate. I want to see evidence of clinical benefit to support this assumption (e.g. lower fracture incidences, better bone strength, etc.). Maybe I should write more letters

Hi Mrs O

I have finally got the info from my GP re dexa scan. He said my score was -1.5 which according to the paper I read was not enough to be diagnosed with osteoporosis but shows some low bone mass. I presume this is what the consultant was so adamant that I take AA, as a preventative measure. My doctor blames it on the steroids but I have also been taking Omeprazole which also can leach calcium from your body, I have since stopped taking it. He seemed to think that I will be on AA for 2-3 years and then stop. What happens then? Wendy

Hello again Wendy

At -1.5 it sounds as though you are just into the osteopenia range (the stage before osteoporosis). My first DEXA shortly after starting 40mgs steroids was -1.8 and at the time I was told that that was normal. The DEXA carried out after 2 years on the steroids revealed a very slight drop to -2.0 (within the osteopenia range). I felt this was a surprisingly good result considering my high steroid starting dose, and no bone protection meds, plus no calcium supplements were prescribed. My third DEXA another two years down the line showed the teeniest drop to -2.1 (spine only), so still within the osteopenia range. At the age of 71, I consider that some bone thinning is to be expected but I have not been advised (nor would I consider) to take bisphosphonates at this stage. I didn't take Omeprazole as both that and Lansoprazole caused a most unwanted side effect to my bowel routine! However, following a Vit D blood test which showed a deficiency, I have just completed a 3 month course of high dose Vitamin D which enables more calcium from food to be absorbed into the bones. With all the bad press about AA including the advice to get any dental treatment carried out before starting it, and coming off it after a maximum of 5 years, and the number of years it takes to leave your body, if I ever did need bone protection, I would be looking for an alternative. All the best.

I think your figures are similar to mine - both 3 months into pred and after three and half years. I have taken calcium the whole time but only 6 weeks of AA. AA was pushed by the manufacturer to doctors as being the Holy Grail of avoiding bone density loss if they gave it to their late middle-age patients who were at risk. What a doctor learns at a certain age is very difficult to challenge and convince them of another story.

There are several aspects to it all. Having been told there were no problems many doctors decided it should be used over long periods and for all patients. The reality is that, after it has been used in a large population for 10 years, it can be seen it is NOT without side effects and we still do not know what the consequences of taking it for even longer periods. In the USA it is now recommended that it should only be used for a maximum of 5 years before giving the patient a break from it.

Steroids and omoeprazole don't "leach" calcium, once it is in the bone it is there, but bone is a living substance, continually being renewed and pred makes you lose calcium quicker via the kidneys so if you have more in your diet it helps massively in allowing enough to get to the bones. Omeprazole prevents the body absorbing it from the gut in the first place. If you take omeprazole for a long time then I personally think it is more likely to do the damage than the pred without it - and many patients on pred are given omeprazole to avoid stomach problems - again whether they need it or not so it is a double whammy.

At least your doctor says 2 years - if you have no real problems then fair enough. The loss of bone density with pred usually appears in the first 6 months and he probably thinks he will have covered for that and built up a bit more density. Changes in bone density are quite slow - you can't see differences in a few months, it usually takes at least 18 months to identify a meaningful change.

Of course - he may be among the innocents who believe that PMR only lasts 2 years and you will be off pred in 2 or 3 years and won't need the AA any more. But that is a whole different problem!

Steve: can't remember the full details offhand about the clinical trials but it was less the trials so much as providing the heel scanner devices to many doctors for them to see the effect of giving their patients at risk the drug. The heel scanner devices are useless, only a dexa scanner gives an anything like realistic picture - so anyone reading this considering getting a heel scanner reading (Boots I think or these dreadful touring "private" health check cowboys) DON'T WASTE YOUR MONEY!! If I can find it I'll tell you - just got back from holiday :-(

Eileen

Hi all I am prone to urinary infections I try to do what people tell me and drink lots of water but I still get them. I bought some dipsticks from off the net to do my own tests. Have just had one about 3 three weeks ago which seems to have either returned or not really gone away.I have just been to the doctors and because I had antibiotics 3 weeks ago the doc has sent a sample away to be tested. I am at a loss Wendy

If you have PMR and are on pred both the PMR and the pred can give rise to a form of cystitis - which is what the bacterial infect also gives you and what causes the pain. If you don't feel ill as such then it could well be that.

There are other causes of bladder discomfort and if the culture comes back negative (and frankly, I personally do object to antibiotics being handed out WITHOUT one having been done) your GP should consider the other causes. "Irritable bladder" is one problem which it is possible to treat fairly successfully. There are also what can only be described as "mechanical" problems including the urethra (the tube that connects the bladder to the outside) being shorter or narrower than is normal. Both can lead to similar problems. I find I have problems after a day travelling where I didn't drink as much as usual between breakfast and the evening and loo stops were also restricted.

Sometimes though if it is a bladder infection then something more than 3 days of trimethoprine is needed - especially if the bacteria are E Coli. They are bacteria normally found in the gut and have strayed if there is any stool left on the skin. Using wet wipes/tissue religiously to clean the area often helps. And sometimes if someone gets a lot of proven infections with maybe 6 weeks or so between attacks a long course of the right antibiotic may be needed - after identifying it properly.

Bladder problems are certainly common amongst PMR patients and we have wondered whether the muscles controlling bladder function are also affected by the PMR. In fact, MrsK reckoned we should take out shares in Tena! It is known that sometimes the bladder doesn't empty properly so a small amount of "old" urine remains after every toilet visit and that can encourage the growth of larger numbers of bacteria - urine SHOULD be sterile, but a few bacteria can multiply very quickly!

Hope the problem gets sorted

Eileen

Thank you for your reply I don't feel ill as such although I do have what you term a bladder problem in other words when I want to go I have to go or else, but what I do get is very dizzy, what I call my lenny the cross eyed lion head I also get very tired. That is basically when I know I have a water infection. I don't get soreness down below or backache in fact I don't have any aches and pains at all, which makes me wonder if the PMR has gone into remission. When I get this fuzzy head sorted I am going to try to reduce the preds, I am on 6mg at the moment. Wendy

Hi folks just to let everybody that I have had help from in the past know I am feeling better. I don't want to shout it from the rooftops but I feel normal again. I have had PMR for nearly three years and most of the time I have gone my own sweet way, took no notice of people like the one referred to in posts higher up in this discussion. So keep at it folks don,t give up there is a light at the end of the tunnel Wendy