50 year old Aussie, Diagnosed about a month ago through pain & blood test results. Initially took 10mg pred for 3 weeks - pain was gone & inflammation markers had decreased lots. I tried to cut down to 9mg as per my rheumy's advice. Pain came back 2 days later & just about as bad as pre pred. Have been wavering between 10 & 11mg, feeling slightly achy all day. I have appt with rheumy next week. Is it my imagination, or does the weather affect my condition? I seem to be considerably stiffer & achy on rainy days..
First of all - Hi and welcome!
10mg is a very low starting dose for PMR - the normal recommended dose is 15mg. However, if your symptoms responded to 10mg, that's good BUT your rheumy (who should know better) must remember that pred has not cured the underlying autoimmune disease that causes the symptoms that we know as PMR (which is only medical speak for "many painful muscles". You are now looking for the lowest dose of pred that will do that without allowing the inflammation to start up again - and from what you say it is blatantly obvious that the 10mg was just that dose AT THE MOMENT. It doesn't mean you will get lower, it means there is still too much gong on at the present time. Many of us take over a year to get down to 10mg successfully. I have had PMR for 9 years, 4 of them on pred and have failed to get below 9mg every time I have tried until this year. I'm now down to 6mg but I can only do it very very slowly - even getting down 1/2mg takes me 4 weeks of reducing the number of days of old dose between a day of the new dose one at a time.
If you follow this link:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
it will take you to the top of this forum and the post has links to a support site from the northeast of England which has a lot of info and advice all approved by specialist doctors and also an associated forum where there is a vast amount of info (as well as fun and laughs from people in the same boat). There is also a link to a paper from a group in Bristol, England with recommendations for treating PMR and GCA and their suggestions for a reducing plan. They keep their patients on 15 for 6 weeks, 12.5 for 6 weeks and then 10mg for a year - to get the inflammation well under control before aiming to get their patients off in 2 years altogether. That way they manage a flare rate of 20% rather than 60% with other reductions. If you are only 50 then you are the bottom end of the age group - and it is also known that younger patients are rather atypical in presenting symptoms and ongoing disease. Your rheumy may have found older patients respond well to that sort of reduction, though in our experience it would be too much too soon for most people).
It is accepted that the primary cause of a flare is reducing too far or too fast - and then you have to go back up to a higher dose and often find (as you are in fact) that the pred is less effective the next time round and it becomes increasingly difficult to reduce the dose if you start yo-yoing the dose. Control the inflammation properly the first time - and it reduces later problems.
Now to the other question: yes, weather DOES affect many people. In the old days there were areas in the UK that were regarded as being bad for "rheumatics" - and I believe that our mothers and grandmothers "rheumatics" were nothing other than PMR to one degree or another. Damp and chilly weather, low lying damp areas were and are bad news if you pave PMR and are weather sensitive. In Germany they even have a section of the weather forecast called the "bio weather" and when it is going to be damp then rhematism always gets a mention. Cold dry weather is fine for me - but I know it will change 2 or 3 days in advance! It is getting better as I get to a lower dose of pred - but I think that may be because the PMR is waning too.
If you can't avoid the change of weather you can keep warmer and I find that does help, especially a scarf (even a fine one, not a woolly one) around your neck. That is also something you see a LOT here in central Europe - draughts are recognised as causing a lot of neck and shoulder problems in Germanic communities whilst the anglo-saxons are far more dismissive!
Keep in touch now you have found us
Eileen
Thank you so much, Eileen. I have now read many of your excellent replies and advice and think it is wonderful that you are able to explain in such a succinct manner. Very kind of you to go to the trouble. I will definitely print off the Bristol paper & arm myself with it next week @ my rheumy visit. After seeing my ESR down from 47 to 11 and my CRP from 21 to 2 he told me to try & keep up my level of exercise such as running, doing step classes etc. . I feel that this also contributed to my backslide - & I have since read about 'clearing the decks' here which makes perfect sense (now). From all the reading here, I have gathered also that a drastic change of diet isn't going to necessarily change anything. (So many hpeople without PMR have recommended to meeliminating this,that or the other). My diet is healthy but involves regular wine consumption. With regard to the weather, we don't really get very cold here, compared to your part of the world. Especially now that we are in spring, but we've had massive storms of late and it's hot & muggy one minute & cool & breezy the next. Really know what my nan meant when she would say that she could feel feel the weather changes in her bones. Also explains why I am now addicted to warm baths at night! Eileen, I'm so sorry that you have had this condition for so long. It must test your levels of patience. I went & read your brief history & the start of yours sounded a lot like the start of mine, except mine was primarily the torso around the ribcage, upper back & neck. I first noticed my pain & heaviness of body in step classes. Have you ever been able to get back to that kind of exercise? I do walks & swim when I can, but miss that exercise high from a good workout. Also, so far I've noticed minimal side effects from the pred (have put on a bit over a kilo, but I'm betting that's due to lack of exercise). Is it also because 10 is a relatively low dose and I've only been taking them for a few weeks, do you think? I am sleeping well and I think that's because of not sleeping well due to the awful pain for the months before the diagnosis & pred. Do you mind sharing which side effects you've had and on what sort of dose/timeframe it was? Thank you again. I feel so much better after talking with someone who knows exactly what I'm going through.
Hmmm - this is the second time in a couple of weeks someone has been told by a rheumy to "exercise as usual". The other lady went to a zumba class and ended up in as bad a state as pre pred! If only these "experts" had had PMR or taken pred at some point! They'll tell you that "you'll be back to normal as soon as you take the pred" - if only!
It isn't entirely clear what happens in PMR - the autoimmune disorder makes your body attack something that makes your muscles sore, especially if you do a bit too much, but whilst some experts suggest it may be the very small blood vessels that are affected with some form of vasculitis others disagree. I'm inclined to blame something that disturbs the blood flow to the muscles and it could well be a vasculitis - a sort of mini-version of giant cell arteritis which is often associated with PMR. Whatever...
Good physios know that they have to be very careful with patients who have PMR, even massage must be approached with care, by no means everyone can cope with it. Do what you can - but always stop before you feel exhausted. Having established you can do x, try x+ a bit the next time - and always allow a day to rest between doing it. In time you probably will build up what you can manage but it is unlikely to be at the same intensity as before PMR and pred. I have taken 3 different forms of pred - with 2 my muscles were good, the other made me weak and there was definitely muscle wasting. If you notice that - tell the doctor. Take care with statins too - that knocked me for 6 last year and it has taken a long time to recover from the effects of the medrol and the statin. This time last year I struggled with more than 5 or 6 steps, now I can manage the two flights up to our flat, don't need the lift anymore :-)
Until 18 months ago I skied, didn't ski last season but not because of PMR and am hoping to ski this year. It takes me much longer than it used to to build up at the beginning of the season and I really struggle with a long run. But I can usually ski for a few hours going up and down shorter runs - the rest on the lift is enough to extend the session! But I rarely go out every day.
As I said, I've been on two sorts of pred where I had almost no side effects, I didn't put on much weight with ordinary prednisolone although it redistributed to around my middle. I put on a lot of weight pre-pred because the PMR stopped me exercising properly. With Medrol (methyl prednisolone) I put on weight, had a beard, muscle wasting, my skin and hair were AWFUL, didn't like it at all, plus it didn't seem to work for me and needed higher and higher doses, went up to 20mg at one time and it didn't achieve a lot.
Now I take Lodotra, a form of prednisone that is taken at 10pm, releasing in the early morning before the cytokines that cause the inflammation are released so they are rendered ineffective. It's approved for rheumatoid arthritis morning stiffness - but my GP suggested I try it and I love it. Everything is back to normal pretty much: skin and hair fine, muscles OK and I have lost 13kg :-) Still need to lose a bit more though. And I have been able to reduce the dose to 6mg (in tiny tiny steps) - when I started it I went from 20mg medrol doing nothing to 15mg Lodotra being brilliant.
There are over 80 documented side effects - no one gets them all, some get none. Wait and see - it is a well known phenomenon that if you read the side effects you are more likely to complain about them! Weight gain is helped by keeping the carb in your diet down - also helps avoid developing pred diabetes - and a decent amount of protein will also help your muscles. All the side effects are more likely at higher dose, as you approach 7mg that reduces - the body makes about that amount anyway and it is the excess that causes the problems. But everyone is different, both in the way PMR affects them and how pred affects them. Some get manic, can't sleep, others just feel knackered. Your wine consumption may change - some of us found our beloved reds had to be left on the rack, others find white unbelievably sour all of a sudden. I'm now back to red (I never gave up the white). Others lose their taste for alcohol :-(
It is possible that the lack of a "high" may also be due to the fatigue that is a great part of any autoimmune disorder - I can't say I've ever had a high from exercise but maybe I didn't do enough ;-) That will get better with time - but it may take quite a long time. It's embarrassing being 2/3 of the way down a ski run and suddenly wondering if you can get to the bottom and the lift to go home!
Just because your ESR is down to "within normal range" doesn't mean it is normal for you - my normal is about 4, but it also doesn't go up however ill I am.
You can have a bath???????????? Gosh - I'm afraid I wouldn't manage to get out (and I'm not alone!) Thank goodness for showers is all I can say!
Where are you in Oz? We spent 4 weeks in the east a few years ago after a meeting in Brisbane. Need a meeting in Perth now to do the other end now we have time (were still working full time then)
Anyway - this is enough for you to digest for now
Cheers, Eileen