Here we go again?

[Lanakay]

I was diagnosed in September of 2017 with PMR and started on 20mg of prednisone. Finally after a very slow taper I got to zero in July. For a while all was ok. I do have degenerative disc disease and a herniated disc so didn’t expect miracles. I got by with gabapentin and Tylenol. The last few days have been pretty bad and today I couldn’t deny it any more. Both shoulders and bevels hurt, back buttocks and thighs hurt so bad I can hardly walk. My hands even hurt. I started back on 5mg prednisone today and will call my rheumatologist tomorrow. I am discouraged. I still work part time and was exercising gently up until this got so bad again. I stopped the exercise for now. I love my job and work about 12-15 hours a week. I really don’t want to quit that. Do any of you have any encouraging words for me. I am feeling rather defeated.

[Bcol]

Good morning Lanakay, so sorry to your news, after four years and getting to zero you must be really disappointed in feeling that it has all come back again. However, at least now you know all about it and what to do. It may be that it hadn't totally gone away and without any Pred to keep the last few bits under control it has come back as a flare. If so then a short course, flare rule, may well get you back on track and pain free again. When you get back down again, perhaps a few extra months or longer at one or two mg would be beneficial. No need to feel defeated, it is one those things that takes as long as it will take and you are still well under the average time, which I think is a tad under six years for getting off Pred. Hope the call to the Rheumy goes well and keep us in touch.

[PMRpro Ambassador]

You obviously really only need a low dose of pred ongoing - it is perfectly possible that as little as 1 or 2 mg is plenty and Prof Dasgupta told us last summer that he often keeps patients at 2-3mg long term as it reduces the incidence of relapses. I think that may be pessimistic for some people - it is fine to test the water to even less as it might work fine.

You should never have been aiming relentlessly for zero - the objective is the lowest dose that manages the symptoms as well as the starting dose did. When you are able to reduce steadily to low doses then that means the disease activity has reduced over time - but it doesn't mean it has gone away altogether. Like a dripping tap will eventually fill a bucket and overflow if you don't scoop the water out at at least the same rate as it is filling - the little bit ofleftover inflammation builds up and does much the same but it hurts instead of being a puddle. The lower the dose of pred, the slower and more carefully you need to go - and even 1mg to zero needs to be treated as a slow taper - you might even find 1mg every other day, every third day, is enough but zero just isn't.

[Lanakay in reply to PMRpro]

Thank you. I was at 1mg and then even at 1/2 for long enough that I thought I was good to go. I was wrong. Another PMR lesson learned. I have been feeling terrible for awhile. I couldn’t get up from a chair. I was blaming it on my back. I took 10 mg of prednisone yesterday and 5mg today. I’m a new person. How do I know how low to go?

[PMRpro Ambassador in reply to Lanakay]

You could probably go as low as 2mg or even 1mg. They are such low doses they are saffe to take your time at. Even Prof Dasgupta says so.

We've been talking about flares versus relapse at a research meeting this afternoon. I don't think that a lot of doctors appreciate just how low a dose can keep symptoms at bay. I've heard of doctors saying 1mg "can't be doing anything" while nurses say "it can be doing enough". I even know of someone who could manage on 1mg every third day - but not on zero!! It really isn't unknown for patients to stop and it take 6 months for the inflammation to build up enough to cause symptoms because the disease activity is so low - but not gone for good.

[Lanakay]

Thank you so much. I was taking 1/2 mg for quite a while and I was fine. It took a few months At zero and WOW! I don’t want to experience this again. I am much better after two 5mg doses. I wonder if I should stay at 5 a few days or drop down right away. I am so much better today.

[PMRpro Ambassador in reply to Lanakay]

I'd give it a week - then try less