Coming off Prednisolone if PMR dx is in doubt

Yes I had wondered about the Adcal I have been taking for as long as the steroids. Because pseudogout can be caused by an excess of calcium in the blood. And for the first few months I just took it literally as indicated on the pack - two a day, which I stupidly took with the prednisolone at breakfast. Now I tend to take it after breakfast, at least thre hours after I take the pred (as I have that with yogurt any time between 4.30 and 6.30am whenever I happen to be awake) and in the evening.

And I have to admit that a double gin and tonic in the evening usually does the trick when it comes to the back pain... 

I will ask my GP about dropping the Adcal -or maybe just halving the dose as I do have slight osteoporosis in my spine and do not want to take alendronic acid just yet, though accept I may have to at some point in the next few years.

Calcium citrate is felt to be a bit less of a problem as it dissolves better. I have no idea whether it is available in the UK though. Worth asking. A lot depends on the rest of your diet - I was told to cut dairy so my dietary calcium intake is low. The only problem I used to have that I am sure is calcium is bladder irritation due to calcium grit on days where I was drinking less - particularly when travelling. When I consciously keep the fluid level up it doesn't happen.

A G&T for back pains sounds a good compromise to me! Can't get diet tonic here and I hate the full-fat stuff, far too sweet, so a G&T is a treat when in the UK or for a couple of months until the cans brought back from the UK get to their use-by date. A campari spritz is a good substitute though...

Well, yes I suppose I have been trying to get off pred for a while now - but stayed on 5 mg for about six months as I had problems on 4 - though in retrospect that was mostly to do with my knee.

The main reason for my PMR appearing 'atypical' seemed to be the lack of shoulder involvement - though my new rheumatologist agrees that that does not necessarily mean it wasn't PMR. To be honest I never feel my symptoms are that different to anyone else on this forum. It started overnight, I had night sweats, weight loss - and the physio I went to in those first few months when I thought it was caused by dynamic pilates (ha! those were the days....) said that I had an inflamed piriformis. I wouldn't use the word "miraculous" when it came to the 15mg test - but within a few days I could do my shoes up, get out of bed without too much stiffness and walk upstairs instead of crawling. And within a week or so I would say I probably felt 80% better, though at that stage I was still very tired.

I will look in to Bowen therapists (there is one quite near me but he is SO creepy....). There is also someone who specialises in myofascial massage who is supposed to be very good.

Thanks for your advice as always 

 

Yes - an 80% improvement in a week at 15mg sounds fair enough. I sometimes do wonder what exactly they want in PMR - 100% identical patients I assume! Depends how long you leave it for: leave it long enough and you can usually find EVERY symptom! Except in me - never have had suitable blood results!

And you do have a history of piriformis problems so it is fair enough to suspect something there. I have had both piriformis and myofascial problems in the last couple of years and where previously I never managed to get below 9mg, once they had been quite aggressively dealt with I have reduced pred steadily to 4mg and feel very different from how I felt earlier. 

That said - I suspect the biggest benefit was in having a wisdom tooth removed that was a ffecting my bite! I had investigated having it removed in the early days of PMR (and it was PMR, not the tooth then) but the dentist obviously didn't want the work. Had I taken the advice of the dentist here I would have saved myself a lot of discomfort I suspect - in the UK Bowen kept me going. When I moved here that fell by the wayside and as the tooth erupted further the muscle problems increased. Ah well...

This is a problem that often arises when you have to change doctors in the middle - especially if the first one used a pred dose that is well above the 15mg that is accepted as a good place to start.

If it is the PMR we talk about on this forum it will respond pretty well to 15mg - yes, a higher dose will achieve a faster result but it will also achieve results in other forms of arthritis or other illnesses where 15mg probably would give a poor result. You can see a graph that illustrates it in the Quick and Kirwan paper "Our approach to the diagnosis and management of PMR and GCA" - with PMR the symptoms fall dramatically, in other arthritises they fall some but not as much. If that response isn't seen then there must be a question about the diagnosis of pred-responsive PMR - because it would be more accurate to say "polymyalgic syndrome" and then subdivide that into pred-responsive and non-pred responsive. 

Your doctor can't test for allergies while you are on highish pred - it will just mask the histamine response. I think it is pretty likely you will have pain, if only because dropping 10mg in 2 weeks is very likely to cause steroid withdrawal pain. It isn't dangerous reducing that much because you are still well above the amount the body needs to function but I imagine you will feel a bit rough for a couple of weeks.

I don't think that I have any answers other than what I have written so far. What we need is a decent and easily accessible definite test for PMR - but that ain't going to happen anytime soon I'm afraid. 

Thanks Eileen, guess I will just have to go with it and do as he suggests.

At least I will know what to expect pain wise so will let you know.

Thanks again, Dave

There are 82 registered side effects of pred.  A comphrensive list because it is a well used and well documented medication. 

Hives is listed as 'not a common one'.

There is a treatment for Hives and it will be listed on this site or on the NHS site. 

I would take a look at it and then have a 'chat' with your medic.

 

Hi Eileen. Just an update for you and fellow sufferers who need to come down quickly off of preds.

I have dropped from 21mg 9 days ago and am currently on 12mg dropping 1mg a day. My symptoms have progressively worsened over this period (after day 3) and today I am beginning to feel all the aches and pains slowly coming back to my legs, shoulders and upper arms. As you advised last week hopefully this is due to withdrawal and not the return of PMR. The itching and rash seems to have lessened so I was wondering if I could actually be allergic to anti inflammatories. I see my doctor again on Monday so hope to be down to 10mg by then but intend to refuse to go lower if he suggests it.

As lodger commented - hives is a side effect of pred. It could also be an allergy to the packing material in the tablets, every company uses different stuff so one from a different company might be OK though you'd have to try to find out.

Out of interest - have I asked you before why you are on such a high dose of pred if the dx was PMR? It sounds as if you might have been OK on somewhere around where you are now anyway.

Hi Eileen. When I was first diagnosed last May my doctor put me on 15mg to start with but when I saw her a week later I still had pain in my legs, shoulders and arms so she up'd my dose to 20mg. The following week the pain had cleared from my legs but arms and shoulders were still painful so she suggested going up to 25mg for a month or two. I began to reduce from 25mg to 22.5mg in September then to 21mg in October.

Had the symptoms actually improved a lot on the 15 or 20mg? And are you large? Just interested as there has recently been some discussion about the starting dose possibly should be higher for bigger people - after all, you wouldn't really expect the same dose to work for a 5 foot nothing small woman and a 6 ft 6in rugby player who could be twice the weight. It used to be looked at as being related to skin surface area (don't ask me why) which doesn't differ so much between people.

No, the symptoms didn't improve on a lower dose. I came down from 25mg to 22.5mg without any significant change but noticed a few aches appearing when down to 21mg and thats when the rash and itching appeared. Over the last 8 days reducing 1mg a day the ache and rash got worse but today the rash has cleared slightly but the aches still remain.

I have put on a bit of weight since being on preds, up from a normal 11.5 stone to around 12.5 but I am 5ft 10inches tall and in my mid 60's but sometimes feel a older due to PMR. I am no rugby player Eileen but sometimes my wife says I am a bit of an old woman (as most men are I am sure). Regards Dave

Which does contribute a bit to the concept of "maybe not PMR" and it is a shame the GP raised the dose rather than asking for advice then. Very intrigued to hear the outcome. 

Give your wife my reagrds - tellhe I have one like you at home ;-)

Many thanks Eileen, i knew I could count on you so will pass it on to my beloved.

regards (obviously) and tell her I have one like you!

Oh for an edit facility on this forum!

Hi Eileen, have managed to get down to 10mg today ready to see my doctor on Monday regarding the rash and itching. I have very achy shoulders and upper arms and neck and limited bending in my legs behind the knee's which I had originally and had to take Paracetamol yesterday for the 1st time in ages. However the question I would like to ask you is that the rash and itching have almost gone therefore is it possible that I could have an allergy to the preds as I have had reactions to anti-inflammatories in the past ever since I was on Diclofenic for 5 months and had a bad reaction (in hospital for 6 days with kidney and liver failure) 10 years ago. Thought I would ask before seeing the doc. Regards Dave (tavidu)

NSAIDs (non-steroidal anti-inflammatory drugs) and pred are different - and allergies to NSAIDs are fairly common. Pred itself can cause hives/urticaria - it is one of the 80+ listed side effects. It is possible that something in the pred tablets doesn't agree with you causing the rash - we have heard of patients taking the enteric coated sort of pred who react to the colour that is used to identify 5mg (red) and 2.5mg (brown) pills and there are all sorts of fillers in the tablets which vary from manufacturer to manufacturer. It COULD have been coincidence - but that is a vain hope I think!

Hope the doc has some bright ideas on Monday - shame you aren't OK on the 10mg dose if the rash is fading. Of course, some of the discomfort may be withdrawal pain and might settle down again after a few weeks. 

Thanks Eileen, will see what he says on Monday. Have a good weekend. Dave and her indoors.