Collarbone pain/inflammation - part of PMR or not?

I have had pain about halfway along my collarbone now and again, but never something that has made me worried. However - I suspect mine was associated with myofascial pain syndrome - most of that has been sorted and lots of niggles have almost disappeared.

"This is possibly connected with the fact that I have just reduced from 6mg to 5mg - and because I was feeling so well (I was convinced the PMR had gone because I had had no symptoms at all for a week or so) I reduced in a week rather than four or five."

This is the point at which it becomes even more important to reduce very slowly - especially since it sounds as if you have been up until now! The experts have said for long enough that a reduction shouldn't be more than 10% of the current dose. At 10mg that is 1mg, by the time you get to 5mg it is 1/2mg. So when you try a 1mg drop in the space of a few days it is a considerable change.

It isn't just a case of missing the right dose for the PMR to be controlled. It is also the fact that the body has become used to the pred being around. Take it away, even partially, and your body says hey - wait a minute, what are you doing. When you reduce in tiny steps and, even better, go from every day old dose to every day new dose over a period of weeks rather than days, the body has plenty of time to accept the change. And it doesn't protest as loudly.

I'll bet, too, that you've been a busy bunny because you have felt so well? Stop spring-cleaning!!!

Eileen

Ha! my husband would find your last comment very amusing. There really is no danger of that with me. Even the dog looks surprised when he sees me with a Hoover...

But thanks for that Eileen. I think I probably should have staggered my reduction - should I do alternate days with 6mg or is it too late for that now?

What's a hoover? ;-)

How did you reduce before? I'd sort of assumed you did something like this:

My reductions are VERY slow. I use the following pattern to reduce each 1mg:

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

1 day new dose, 2 days old dose

1 day new dose, 1 day old dose

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

1 day old dose, 5 days new dose

1 day old dose, 6 days new dose

By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.

I've been disseminating this all over recently - other versions are available but this is what I do and it is easy to cut and paste! These schemes have worked for everyone who has used them so far and a consultant in the north is trying it with his patients too. It seems to avoid the "is it steroid withdrawal" versus "is the dose too low" conundrum.

I don't know - it isn't too late I'd have thought, it may be coincidence the collarbone hurts. Can't hurt to try if you are bothered. Or go back to 6mg and start over again. This is a low dose, the side effects are minimal so doing the tortoise from now on can only be a plus in avoiding wobbles.

Eileen

Yes I have done something similar in the past except that once I've got to I day new dose, I day old dose I then don't bother with the second half, just stay at new dose. This time I think I may have started at 3 day old dose so basically only took just over a week to reduce. And I felt fine on it, in fact very good, and it's not as if the collarbone pain is bad. It's just a bit disappointing as I really thought the PMR might have gone (tho I wasn't going to tell my husband that - far too useful for getting out of doing things I don't want to do... Hmm perhaps I am being punished for being so evil.)

Karma comes back to bite ;-)

As I say, it could be coincidence. PMR gets blamed for a lot of things - having PMR doesn't make us immune to other problems!!!! Same applies to pred - gets blamed for all sorts of things!

I had PMR for 5 years with no pred, have been on pred for nearly 5 years. Lots of things happened in both set-ups - not pred's fault but they are things pred gets the blame for!

Sleep tight!

Finding this true myself. Tend to blame everything on pred & PMR. Although the diagnoses is new to me it occurred to me that actually I have had it since at least last July probably even longer. Just took all the various specialists a long time to figure it out.

I have a question for you Eileen. I have taken your advice & take the pred late at night usually around 11 PM. I have noticed that I am starting to feel some pain prior to taking it & it usually takes a few hours for it to subside. Not really bad pain certainly not like the flare up I had a few weeks ago, which really made childbirth feel like a walk in the park. It's really helpful to take the pred at this hour. Prior to this I was taking it in the morning & waking up in a lot of pain & suffering for a few hours. Nice to start the day w/o the pain. Great suggestion. Plus I would rather the side effects of pred carry on which I am sleeping.

Mary

Is the question about the pain returning in the evening? The pred itself is excreted via the kidneys within a few hours after the peak level is achieved, the antiinflammatory effect lasts from 12 to 36 hours so it is a matter of luck where on the scale you come! It's really a case of finding the best mix for you - especially as during the day you should find things improving as you get moving. I used to take my dose every other day (it's a way of reducing the side effects by doesn't always work for PMR - it obviously worked for a long time for me. If you want to watch TV it probably doesn't matter if you are stiff and a bit sore, if you want to go out on the town it's another matter!

So many replies on reducing preds are really helpful, I have had PMR exactly 12 Months to the date, my Doc is very helpful and informative. At the moment I am trying the 1 day new dose 6 days old dose, hopefully it may be ok. I am on 7mgs and really keen to reduce but in Jan, I reduced to 6 and for 6 weeks suffered all the symptoms of stiffness, not sleeping etc, etc, it got so bad that I have now been on 7 for 3 weeks and virtually pain and stiffness free. AS I am 74yrs I expect some discomfort and am surprised at how many people suffer with PMR I had never heard of it before. As I play crown green bowls to a very competetive standard I am feeling confident enough to look forward to the season which starts this week. I will continue with the suggested reduction method and hopefully have something to report to my Rheumy who I see in two weeks. He expects me to be down to 4 by April but this has not been possible because of a bad flare up. All comments are really helpful. Thankyou fellow sufferers .

Both my sister and I have PMR and she was unfortunate to also develop GCA. We both had similar symptoms but I also get pain around the collar bone. As I already have osteoarthritis there, I'm inclined to think that's what is causing my discomfort. I was on NSAIDS but had to stop because of taking pred, but can keep taking other painkillers. The pain I get with PMR feels different to the osteo pain. I also have rheumatoid arthritis so it isn't always easy to pick out what is causing what.

I am consistently surprised at the number of doctors who expect patients to reduce their dose of pred steadily over a period of well under 2 years and achieve a low dose. According to the literature only 25% of patients are able to get to zero pred in under 2 years - and they are at a higher risk of developing it a second time. About half are said to take more like 4 to 6 years overall. I know some specialists don't believe the figures, they think the figure for that first group should be higher. I'm not convinced - I know the forums tend to be the people who have more problems but even so, the group reducing that quickly is VERY small.

I have been on pred for nearly 5 years now, have had a couple of horrendous flares as well as some small ones and am now at last down to 5mg. I would like to try to reduce again but have twinges that put me off the attempt! Once you get to 7mg most doctors tend to stop panicking about getting lower fast - that is about the same amount as your body produces over the day anyway. That is also a real sticking point for the same reason - at lower doses your body has to produce some itself and it takes time for the whole system to get back to working smoothly. So the slower the reduction itself with a decent resting period between each reduction probably helps - especially if you do have any problems. Many doctors like to suggest a rest at 5mg for up to several months - and for some people it seems to work well.

I am on my third bout of PMR and on a reducing scale for pred. This time the reductio is in smaller doses and I feel better this time then when it went in bigger steps, so rather than say from 15 to 10 to 5 over time, its dropping in 1's. A month. Last time the pain from other inflammatory conditions came back with a vengeance once te pre was out of my system. This time it is more gradual and more manageable. My sister has a different GP and they took her off the pred too soon and her inflammation levels shot up again and she had another bout of GCA.

I am planning to ask what sort of exercise is best for arthritis in the sholder/clavical area when I go for my next check up. I am not big on swiming, but love yoga when I am up to it. I used to like weight training, nothing too drastic, just enough to keep a it of tone. Does anyone hve any ideas or tips, many thanks

Heavens Sue - you are the first poor soul I've come across on their THIRD lot of PMR. That really does seem a short straw to have drawn! Did you see the reduction plan further up this thread? You may find that helps when you get to lower doses and the 1mg becomes too high a percentage of the current dose.

Resistance weights is good generally but don't do it if it hurts - and start with just a few reps, far less than you would have normally done, not more than 1x5, and with a very low weight. PMR causes an intolerance of exercise so it takes some time to build up your strength - if you try to go too fast the muscles will hurt and take days to recover. I wouldn't do too much that takes you arms above your shoulders. I don't like swimming either but I did find aqua aerobics brilliant - again at a low pace at first, it is surprisingly hard work so easy to overdo. A warm pool is essential! Something else a few of us have liked was using a PowerPlate. Bannatynes gyms have them usually and they are really good at building muscle strength - not that you'd imagine it looking at it but sports scientists have found them to be excellent for immobile residents in homes to get their leg muscles strengthened to start walking again. I did Pilates and yoga - with great instructors who adapted everything that posed a problem.

Do you also have arthritis? I just wondered as PMR is a vasculitis as opposed to arthritis - the blood supply to the muscles and tendons is compromised as opposed to there being actual joint damage. The problems are different.

I do agree the best way to reduce is gradually, I went fro 15 to 10 without probs, then d0wn to my present dose of 7 on a monthly basis but am struggling to reduce further without a flare up. Trying the old dose new dose method at the moment , I could recommend Grass Bowls for shoulder and hand exercise but will report after my first seasonal game on friday.

Just having taken another CRP & EST blood test. I am just wondering if the numbers of one test are most significant than the numbers of another.

Eileen mentioned..."Once you get to 7mg most doctors tend to stop panicking about getting lower faster - that is about the same amount as your body produces over the day anyway." Wondering if incentive to try to reduce pred to allow your body to produce more. Does the pred discourage the natural production?

Three or so months ago I did not even know what polymyalgia was & since then had one horrific flare up started taking pred & in a pretty short time feel remarkably better. It's been a real merry-go-round. Thanks for all your comments as I would tend to take reductions in pred perhaps too quickly since I feel so much better.

Does anyone have any special diet do's or don'ts or is that significant?

Thanks

The ESR and the CRP actually are indicators of the same thing - whether there is inflammation present somewhere in the body. The ESR is a bit wobbly in that it can be affected by the time it takes for the sample to get to the lab, how accurately the technologist sets it up (blood is put into a narrow tube which is stood vertically and the distance the red blood cells fall in a given time is measured, if it isn't straight...) whether you are anaemic, pregnant and so on. CRP is thought to be more sensitive as well as being unaffected by any of those things. It is said that doing both increases the sensitivity, some doctors say if both are normal it can't be PMR (rubbish, both mine have never been anything other than normal. I have PMR both clinically and in terms of response to pred, but that's by the by).

It's less an incentive to get your body to produce more - it will make what you need once the level of pred is below that but it takes time for some people to adjust. You can function at a basic level on less than that - but if you try or need to do more there isn't enough and your body tells you to calm down. The natural production is governed by a very complex feedback system of hormones but basically as long as there is enough floating around in the blood the switch stays at "off" - like your central heating while the room is warm enough doesn't switch the boiler on.

Reductions - SLOWLY! The pred has cured nothing - it is allowing you to manage the symptoms - along with YOU promising not to overdo things! The next step is to reduce in small steps to find the lowest dose that will do that to your satisfaction - the more you need/want to do, probably the higher the dose would need to be, if you need to work for example. You could reduce in bigger steps - but you might be fine at 10, back to the start at 5mg - and need to go back to 15 to calm things down. On the other hand, reducing in tiny steps you might find you are fine at 7mg, not fine at 6mg - so you go back to 7mg and you are on far lower a dose than trying the big jumps. Plus you are far less likely to suffer from steroid withdrawal problems.

There are some people who swear by including anti-inflammatory foods like oily fish, turmeric and so on - MrsO is the expert there. It doesn't fit with the way I eat (turmeric doesn't work in salads!) and fish for me is what I can get - being up a mountain this isn't a fish specialty area of Italy. Most of us have found no help from "no nightshades" or "gluten-free". I and others have found low carb helpful in controlling weight gain and the ravenous hunger pred may cause (not in everyone) - but it certainly pays to be very strict and NOT eat just because your mouth says it wants to! And beware supplements other than your calcium and vit D - they are essential and don't mess up the pred except you should take your pred for breakfast and calcium for lunch and dinner so they aren't mixed (pred inhibits absorption of calcium, or the other way round, can't remember!)