Slow dose method, at 4-3, almost to 3 when-

[Lafontainepam1]

A 2 week trip to Arizona then back to the Christmas rush I am without any energy at the end of the day and my R shoulder and wrist are very painful, along with my back. I am at the end of the slow dose, the last 2 weeks from 3. I had been doing so well, careful to never over due, now this! Do I go back up to 5 until I feel better?

[PMRpro Ambassador]

I have tried to get below 5mg repeatedly for the last year or more. 4mg is good, 3.5mg is not. I feel better at 5mg than at 4mg, less tired, so the GP suggested sticking at 5mg at least until the summer. It's a low dose, not that much to worry about in terms of long term side effects. If a week or so of 5mg gets it under control why not go back to 4mg and stick?

[Lafontainepam1 in reply to PMRpro]

I'm sure this is what I need to do, thank you!💞

[Celtic PMRGCAuk volunteer]

Although you say you have been careful not to overdo things, just your recent trip to Arizona may have been enough to upset the applecart. If it were me with those symptoms, I would definitely increase back up to 5mg until you feel better........and until Christmas and all that it usually entails is behind you! Not to do so and get on top of it at this stage could result in having to go much higher (at least that was my experience at the 5 down to 3mg dose). Good luck!

[Lafontainepam1 in reply to Celtic]

Yes I'm sure between the trip and on coming Cgristmas was enough, or it could be my body is not replacing the need for a higher dose yet. Thank you💞💕

[PatrickEC]

I keep getting stuck on 5mg. Using three different approaches - the last being the slow and almost stop method - I have had a flare up just as I thought I was successfully off 6 and onto 5. What I have done each time is go back up to 7 and start all over. I am now on 7 again!! So this time I revisited my GP, to ask his advice and heisi trying to fix me up with a Rheumy ( horrible word!) appointment.

I am interested to see people talkin about wrist pains being the first sign, as my GP tells me that it is osteoarthritis. I beg to differ and am supported by everyone elses's experiences.

The other thing I have which I am sure is related is occasional massive night sweating around the neck and shoulders - enough to warrant changing pyjama tops. Agin the GP says no! Does anyone else experience these?

Ah well! On with the 7's!

[PMRpro Ambassador in reply to PatrickEC]

When your GP has had PMR/GCA himself he can say it isn't! My night sweats are always around my neck - and I know plenty of others who'll tell you the same. The warm feeling in the early mornings can be all over - but the worst area is always around my neck and head, and that is where is actually sweaty.

To touch on Celtic's comment - no, it isn't just after a reduction. Although they are much better at a higher dose, they are still there.

If you are repeatedly getting stuck though that suggests you have found what it is you are looking for. This is not a relentless reduction to zero - it is a reduction to find the lowest possible dose that manages the symptoms adequately. It doesn't mean you won't get lower at some point later on - what it means is that for the moment the disease activity is such that you need that much to manage what it is manifesting as.

PS - why do you need a rheumatologist? If this is the point where your disease activity is, the best rheumatologist in the world won't be able to change that. The best rheumatologist will tell you that this is where you need to be for now. As my rheumatology trained GP says, "You need what you need" - and Celtic's rheumatologist will say much the same - and he is a VERY good rheumatologist!

[barbara1234 in reply to PatrickEC]

I am using the "slow-almost stop" method and have gotten to 3 mg. approaching 2. So far, so good.

Oddly enough, for quite a while I would find myself waking up with a damp pillow and forehead. Finally I decided to run the ceiling fan (on LOW) above me all night long, regardless of the temperature. Voila! No more night sweats. If you have access to a fan, I highly recommend you use it even if, like me, you're sleeping in a nice cold bedroom.

Best, Barbara

[IslandShell in reply to PatrickEC]

I am happy to see your post today as yesterday I was at the Rheumatologists and was told my wrist pain has nothing to do with PMR . I have had it reoccur in both wrists for a couple years now and was relieved when I read here about others experiencing this too. It helps to be reassured by other people with PMR.

Also yes I experience the occasional massive night sweating. SO uncomfortable isn't it? Best wishes to you PatrickEC.

Merk

[Celtic PMRGCAuk volunteer]

Patrick, does the "occasional massive night sweating" mostly occur following or during a reduction stage? If so that could mean your inflammation is not under control at those times. In other words, you have reduced too far for the time being, and that could also be the reason for your continuous difficulty in reducing below 7mg. You haven't said how long you have been on steroids, the starting dose or your reduction regime, and I'm wondering if you may have reduced from the higher doses a little too fast, but the 7mg dose may just be your 'maintenance' dose for now.

[Hidden]

I live in Az. Have PMR and doing holistic from June until I was introduced to Bemer therapy(electromagnetic mat) that improves vasocirculation at the micro vessel level. By 3rd day I was able to sleep on side again and squat and do yoga again, lift arms straight up and pain went from a 9 or 10 most days to 2 or 3. Now on my 4th week and have days at 0. I bought one and became a Distributor because I was so amazed at the results! You can do a 10 week rental and if you see no results, send back. My husband uses for arthritis too - he has knee replacement and a reconstructed foot and ankle. He now golfs 3 times a week without his normal pain. W e are 62 and 64 and now I am back to golf, hiking and yoga - I do not do to the extreme I used to and try not to over do! Hard to admit we have to slow down!

[PatrickEC]

Many thanks to all those kind people who have responded to my first post.

I am 79, and the PMR just came out of nowhere about 2 years ago. Previously I had had the massive night sweats for at least a year, and then I got a horrible wrist pain which I had put down to strumming my mandolin or playing the celtic drum - both needing quick supple wrist movements.

The PMR came about 2 months after the last music session, and I didn't connect either it or the sweats with the PMR which was swift and vicious. I wondered what had hit me - I couildn't even lie down in bed, and slept (or rather didn't) upright in an arm chair. My GP put me on 15mg of pred and again I couldn't beleive how quickly everything was back to normal (of a kind). So my gradual tapering preds began.

I have taken on board all that has been said and am thinking about my next move, and about changing my thoughts about it all. Unfortunately I am on a comlex of drugs for other things, so will be glad to see the back of the preds!

So once again many thanks