PMR side effects

I really appreciate your comments.  Sometimes I wondered if my side effects were part of something else.  Doctors I have dealt with seem to know very little about PMR.  Before I reduced the pred and was having the sight problems I immediately went to a good eye doctor.  I have to see one every year as required for being a tennis official.  He felt that the pred or the PMR might cause the double vision and blurry vision.  Not much consulation but eliminating other problems was good.  At this point I am withdrawing from all tennis tournaments because of the side effects.  Now, apparently, recovery can be, what, 1 to 6 more years?  Again, thanks for your helpful comments.  Good luck to you too.

Just to be a misery - I have had PMR for over 10 years now. I think I could do the umpire's job now but not anything that required standing for long! 

The literature says about 25% of patients get off pred in a couple of years or less but are at a higher risk of relapse. 50% take up to 4 to 6 year - I'm obviously in the other 25%!  These figures do seem to be similar to what we see on the forums, even bearing in mind that the population on the forums is skewed, comprising the people who possibly have more problems. 

Tony, PMR goes into remission when it wants to and not when we want or our medics want it to unfortunately.  That can take anything from two years upwards, with a tiny handful of very lucky people I've spoken to getting off steroids in a year.  Of course, we tend not to come across such people on these forums, probably because they don't feel the need to investigate whilst experiencing a textbook recovery.  However, it is believed that such people can be more likely to succumb to PMR for a second time than those who recovered more slowly.  At diagnosis, I was told 18 months but the goalposts kept being moved for the next few years!  Hopefully, in your case now that you have decided to withdraw from tournaments for a while, you will find that you will start to feel much better.  You are already showing signs of that, having been successful in reducing to10mg, plus the improvement in your blurred vision.  Importantly, do not reduce the steroids too far or by too large an amount at any one time as the body needs time to accept the withdrawal and the lower you get on the steroids, the higher the percentage drop, so the slower you need to go for success.  If you are someone who had raised markers of inflammation in your blood tests (ESR and CRP) at diagnosis, then these can be repeated before each reduction to use as a guide together with your symptoms, ie if they haven't reduced at any time then you need to mark time on the present dose.

Thank you for your good wishes - both my PMR and GCA went into remission approaching 3 years ago and I was able to discontinue steroids.  It took some 5.5 years but it was little hassle as far as side effects were concerned once on the lower doses and life returned very much to normal - so a life-limiting but treatable condition for a while, but not life threatening and untreatable like some worse illnesses.  

No - unpleasant, life-changing and a pain in the rear but NOT life-threatening. It doesn't even shorten our lives as far as anyone knows. 

And it does get better - if nothing else, you learn to manage things better. I still lie there in the mornings wishing I could go back to sleep - but I suspect that may be more to do with too low BP after taking my medication than PMR! 

Are your shoulders much involved in the PMR? Maybe you need some rather more localised treatment - or just a bit more pred for a while.

Hilary, I used to find that sleeping on a folded duvet helped my overnight pain in my hips and shoulders.  In the very early days before diagnosis I used to roll off the bed and roll back in on the other side every half hour or so just to relieve the pain in my hips as turning over was a no-no - needless to say poor hubby was despatched to the spare room!

No Eileen both shoulders are the same and legs too. Nothing has changed except for a miraculous few days after injection but pain slowly returning. Unlike you guys I have to wait for the next injection so hanging on for another in two weeks. I wish I could take extra pred when I need it.

I assume it was an i.m. depomedrone injection - can you have localised shots for the shoulders and hips or can they offer a higher dose depot shot? I just know my granddaughter was on very high dose i.m. pred which lasted longer than that (it had to!).

If you have bursitis in hips and shoulders they will use local cortisone injections in addition to oral pred - maybe the same applies for you. Bursitis will go eventually on oral pred - but it goes a lot quicker with an injection. I speak from bitter experience!

Have you tried keeping your shoulders warm in bed? I realise the night sweats make things like that a problem but I did find my daytime neck pain was greatly eased by a thin scarf to keep draughts off.

Good idea Mrs O but I'm getting married on 18th April so suspect my fiancé wont like that 😄

Oh Hilary, how exciting, but that made me chuckle.  Perhaps in the circumstances an injection the day before might be the best bet! 

 

Hi Eileen

Its been a while since I logged on as have been busy picking our lychee crop and then had to endure a cyclone - bit of a mess.  I was interested in your comment of low BP as I have low blood pressure also.  since I last logged in I have been put on metformin for a slightly raised sugar problem I think it was around 8 but now seems to be controled at 6-7 with the metformin.  Is low BP a symptom of PMR? as I hadn't really noticed that I had low BP before.  I am now down to 4mg and have the shoulder pain or knee pain sometimes at night and definitely the fatigue,  I guess it is the PMR causing that.  I am not going to reduce any more for while as I'm dead scared of a flare.  Q. Do you consider 4mg a medium or low dose as far a side effects go?  I started prednisolone at the end of last May (2014) so its been almost a year.  Q When would I expect to get my muscles back as I find it hard to even get a lid off a jar, and climbing up and especially down steps also is a challenge.

Denise

I always sleep on my sides and the pains are much worse because of it.  I am now sleeping 4-5 hours at nite, very restless, then, unless I force myself to be busy during the day, will nap 2-4 times a day for 1/2 hour to 1.5 hours.  Within 90 minutes of waking in the morning I am ready for a nap.  It's driving me crazy to be so tired all the time.

Yes - heard about the cyclone but all it said on our news was it was coming but then never told us anything about it! Glad you survived. I can imagine it doesn't do farming land any good at all!

No - I have atrial fibrillation and the meds are to control the BP in that context. In the meantime I have lost 17kg in weight so probably that has also had an effect and I have reduced one of the tablets a bit with no problem. 

4mg is considered a low dose - that's what I have got to after 5 years on pred and if I have to stay there that's fine by me! To get there in a year is brilliant! The pred doesn't help the fatigue aspect of the PMR, that is the underlying autoimmune disorder, although I suppose at the higher doses there will be the pred effect to counteract the fatigue.

If you are still having great difficulty with steps I'd suggest maybe your dose is a bit too low. Do you have pain in your hip and outer thigh? That could be trochanteric bursitis, common alongside PMR and makes steps hellish! I had a flare of that last autumn and a local cortisone shot sorted that pretty well. Hand grip is also possibly a tendon/synovitis problem - and maybe a bit more pred might help there too. Even just 5mg might make a difference.

Why are you fighting the fatigue? If you plan a rest/sleep at some point you will almost certainly find you feel better the rest of the time. Many people try to carry on as pre-PMR, but if your body needs rest, it needs rest. Fighting it all uses up energy that can be better employed elsewhere, acceptance that this is the way it is, how can I make the best of it, can bring a lot of relief.

If you are having so much night painyou could  either try increasing your pred dose as it sounds as if you are not taking enough to control the inflammation well or splitting it, taking 2/3 in the morning and the rest late afternoon/early evening. Or you may have bursitis that would respond far better to local cortisone injections and then the lower oral dose would manage the rest.

Thanks Eileen  I'll discuss the couple of those things with my Dr and see what she may be able to do for me and I'm okay to go back up to 5mg if necessary - if that is a low dose then I'll be fine with that and see if it helps.  I really wasn't making much reduction progress there for a while until I went onto Lodatra it seems much easier - well until now anyway.

Appreciate your time

 

I use Lodotra too and was able to reduce far better with it than with pred originally - and also to 4mg but 3mg was a step too far. I'm sure it is because it is there ready and waiting in the early morning! I know it is all in comparison to Medrol for me which was awful and useless even at 20mg but as soon as I switched to Lodotra the Medrol weight started to melt away and all the other side effects went too. 

But whatever version of pred it is - if the underlying disease process is still active you need some pred, and preferably enough pred!