Can PMR symptoms be on mainly one side?

I have been on 7.1/2 mg of preds daily and 15 mg methotrexate once weekly for a month now.     Was relatively Pain free until a week ago where the usual tell tale signs of shoulder pain has reoccurred. Moderate pain but enough to keep me awake at night.  Do I go back to 10 mg or soldier on? same question as yours to the forum.

My question too, How much pain to have as we go down? Thanks for asking that.

When you are doing a reduction step you should feel as well at the end of the reduction as you did at the beginning. Often you need to have a few weeks at a new dose to be sure it is still enough to manage theinflammation - although maybe that is less important when you use the Dead Slow and Nearly Stop approach and only reduce 1/2mg at a time.

And the baseline of how pain-free you should be is the response you got to the starting dose of 15-20mg/day. Very much higher doses confuse things in PMR (obviously you need them for GCA) as they can ease other pain too that isn't PMR. OA for example does tend to return as you reduce the dose.

If 7.5mg is now too little - it may well be that 8mg is enough so going back to 10mg would be too far. 2.5mg at a time once you get to 10mg is far too fast - no reduction should be more than 10% of the current dose so 1mg at a time maximum and often 1/2mg at a time works better in every way.

Doctors are often far too gung-ho with reducing - slowly does it and above all once you get below 10mg because not only the PMR is to be controlled, but your adrenal glands also need to wake up again. It isn't a case of reducing to get off pred - nice as that thought may seem - you are looking for the lowest dose that manages the symptoms. Tat isn't the same thing at all and different people need different doses or all sorts of reasons.

Maria, we are all different, I will not reduce if I have any PMR pain. I pain occurs when the Pred is not controlling the inflammation. I use the DSNS method to taper and go back to the higher level in the taper add 10-20% for a few days. If that controls the pain drop back to the high dosage level in the taper and start again. Good luck, think positive and try to smile. ☺️

Margot, maybe I am just lucky, but I have been basically PMR pain free for about a year. I use the DSNS method, in small steps, as many others have said it is not a race. Currently on 7 mg tapering to 6.5, very active yesterday was good 25 plus mile ride. 2 hours 13 minutes

Peak Heart Rate. 1 hr 13 mins

Cardio 28 mins

Fat Burn 14 mins

Those long climbs really get heart pumping. No pain 13 months ago I was in a wheelchair. EileenH and others on the forum helped me to get moving, I was depressed and sitting around doing nothing, now I am a firm believer in Easy Does It! Just a little exercise and just a bit more each day till you have are working your way back into shape. And very small reductions I of Pred. Good luck get PMR pain free, take your time, think positive and try to smile. ☺️

Thank you Eileen and everyone for your comments which I have found very helpful.I was diagnosed 3 1/2 years ago and after the GP who diagnosed me moved on to another practice I was able to manage my medication and gradually reducing to 3mg. I didn’t miss one day of work and although difficult it was not impossible.On a general check up was told by new GP that I had to get off medication. I managed to reduce to 2 for a month and then have really struggled. Although a more sympathetic GP is happy for me to listen to my body and has given me higher dosage tablets to take if necessary I am really struggling. I have tried 5 and 6 and am still in pain and feel utterly exhausted- but of course can’t sleep! This to the point that I only searched for and discovered this forum yesterday. I feel almost back to square one - fog brain included ( it took me 3 goes to remember my log in!) and in desperation have gone to 10 today in the hope that I can get back in control. Would you suggest 3/5 days at this then 7.5 before I start the really really slow approach that I have been reading about?

Thank you all for your reassuring comments. 

 

Hi Jillian, my Rheumatologist said some people need to stay on 2-3 mg prednisone for life.

I won’t know until I get down to that level.   I hope I can taper to 0, but I will just wait and see how it goes.  You may have the GP doctor check with a Rheumatologist when you have trouble getting below 3.

Thank you Margaret- good advice. I am beginning to wonder if this is so in my case although I haven’t heard of anyone being on them for life. I am obviously concerned about the long term effects. Good luck with the tapering. 

Thank you Eileen, I am happy to go to 10mg and stay there, I didn't know what to do today after 15mg for 3 days and then 10mg for 3 days, doc said go back to 7.5mg, not sure what to do today I took 12, my pain has reduced after those 6 days but not gone completely, I am much happier to take 10 than 12.

Thank you so much for your help, it is very much appreciated.

that is very impressive Mich! What did you say, you were 20- 25 years old

What does the more sympathetic GP think? People like that other GP deserve to get PMR themselves - and have a similar level of care! Or rather, non-care! It is so upsetting when one know-it-all GP messes up years of careful reduction and stability.

I don't really know what to suggest. Is the 10mg helping now? I would give it at least a week before trying any higher if it doesn't work. It is difficult to know whether it is "just" PMR or the adrenal function is also playing a role. If the symptoms do calm down then really you need to stay there until they are fairly stable before trying 7.5mg. Top experts say add 5mg to the dose where you flared - which would be 7.5mg - and that 1 or 2 extra mg could make all the difference. If you stay at the 10mg and it is less than 7-10 days you SHOULD be able to drop to 7.5mg easily enough.

The trouble is that a flare caused like this can often be as difficult to get under control as it was at the start. I do hope not.

Thank you Eileen. I am certainly feeling more human today and have got over ‘the weeps’ that I was reduced to yesterday. I think I just felt so disheartened. Perhaps I have jumped too high to go to 10, but I will heed your advice and will stay on that for at least 5 or until I feel back in control. As I had been self managing I had not been given, or read the slowly slowly  approach, so I am kicking myself that I should have researched this before.

In your experience have you met anyone that has been on predniscolone for life? If that is the case I think I may be bald as a coot by the time I shuffle off! 

Thanks again for your support - invaluable. 

Me possibly?????? I've had PMR for 14 years and counting, been on pred for 9 years now and currently on 9mg. Not sure I need the 9mg for the PMR but it is preventing atrial fibrillation episodes for some reason. That is another question though.

But yes I do know a few people who will be on pred for life - mostly because of adrenal insufficiency though rather than the PMR. I suspect it does become difficult to distinguish sometimes.

Oh gosh Eileen- I am sorry. As a ‘newie’ to the forum I had no idea. No wonder you are so knowledgeable! Well in a way I find it reassuring that 9 years in and you still sound positive- thank you. Atrial fibrillation too- that’s not playing fair! 

Hi Jillian,

I am fairly new to this forum, and have learned a lot.   I read on this forum when you are down to a low dose ( 5 mg and below) maybe only cataracts would be a side effect, so long term use would be ok.  I will be very happy if I can work my way to 7.5 at some point soon ... without pain.

Hi Margaret

i have to admit that I have been fairly ignorant, ably abetted by my Doctors practice, and have been sailing along doing my own thing - reducing as quickly as I can.

Having  hit the brick wall as I have, I realise need to do a lot more research. I have been hugely worried by the side effects of steroids, which was reinforced by my GP ( earlier post). I have found Eileen’s posts extremely reassuring and if as you say the main worry is chateracts that is something I think I can live with. 

The last two/ three months have been horrid almost worse than when it hit me 3 years ago. Psychologically it has been difficult but knowing that People, like Eileen,have been living with it for 9 years and still seem positive is a real lift.

Thank you for your thoughts and comments. 

A little older nick, but still in there kicking. ☺️

In case you haven't seen it, here is a link to an article about the study showing pred in PMR isn't half as bad as painted!

https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

After all - cataracts can be removed and they only happen once in each eye! I'd like them to develop, then I could chuck away one pair of specs!!!!