PMR-new pain

[Sunnyd7]

So back in early December my Rheumy wanted me to wean from 7.5 mg or pred to 6mg. Well I tried this for a week and found I was unable to go this low, so I increased back to 7mg. Took 7 mg for a week and found I was still in pain, where at 7.5 mg I had no pain at all. So with the Christmas season and some very good advice from this forum I decided to go back up to 7.5 mg. Well I have been on 7.5 mg for 5 days now and I am still feeling pain in my shoulders, around my clavicles and upper arms. I did push a little for Christmas carrying things and staying up late finishing baking and wrapping presents, but since have been taking it easy.

I am wondering if I need to just stay on 7.5 mg a little longer or talk to the rheumy about it. I am rather disappointed at 7.5 mg I was pain free, but since I tried to reduce it seems like 7.5 mg may not be enough.

Any thoughts are appreciated.

[PMRpro Ambassador]

It has to clear out the accumulated left-over inflammation that piled up while you were on a lower dose. Some rheumies say add 5mg to the dose you flared at for a few days until the pain is improved and then go back to the dose you were OK at.

If the pain is improving - even if slowly - be patient. If not, I'd try try a few days at 10mg.

And next time - 0.5mg is more than enough now!

[HeronNS]

I've just had the same experience, albeit at a lower dose. An attempt to go from 1.5 to 1 ended up with me eventually, after struggling with 3 and then 4, going up to 7 for about a week (5 mg higher than my last securely good dose of 2 mg) and a fairly rapid reduction back to 4, and now a slow taper to 3.5. I too am cross about this as a year ago I was fine at a lower dose, 2.5 actually, with a couple subsequent successful tapers of .5 mg, taking until June, so I was really slow, before going a step too far too soon! So, the sooner you give in and clear things out with the extra dose, probably the better off you'll be in the long run. Good luck!

[Charlie1boy in reply to HeronNS]

Yes, I can relate very much to your circumstances. I have tried twice in the past year to taper down from 5mg to 4.5mg, and failed on both occasions. Currently, I am on 6mg, where I have been for two months, and this is exactly where I was a year ago. Very frustrating..

So, I am proceeding much more carefully now. It is apparent that tapering at these lower levels is fraught with problems.

Paddy

[Sunnyd7 in reply to Charlie1boy]

Thank you Charlie1boy, I feel your frustration. I was surprised that the Rheumy wanted me to start to wean since I haven't been on the pred for a year yet. Only 10 months. But as others have expressed here, some Rheumys just want to move to fast or don't understand.

[DorsetLady PMRGCAuk volunteer]

Hi Sunnyd,

As we’re always saying from 7.5mg down can be quite tricky - adrenal glands and all that! Plus each reduction is a bigger percentage than previous one. So slowly really is the only way for most peope. if it were me I’d do as PMRpro suggests - up to 10mg for a few days, clear the accumulated inflammation and then back down to 7.5mg. Then 0.5mg drops - no bigger!

[Sunnyd7]

Thank you so much for your response. I was trying to reduce by .5 increments when the drop from 7.5 to 6 caused me pain. I did go back up to 7 but that wasn't as successful. my original dose was 7.5 mg so I went back to that. we have been having very cold weather here with below zero temperatures for 3+ days and I was thinking maybe it was that. I decided that I would stay at my original dose of 7.5 until after the new year and then wean down by .05 which is the best advice I have received from this forum.

[PMRpro Ambassador in reply to Sunnyd7]

" I was trying to reduce by .5 increments when the drop from 7.5 to 6 caused me pain."

That was 1.5mg - 20% of the current dose. Even 10% would have been pushing it.

[paulst955]

If your Rheumy told you to go from 7.5. to 6 of pred he or she does not have a clue avoid that advice and probably the Rheumy as well.

[Sunnyd7 in reply to paulst955]

I agree, thank you.

[Hirwaen]

Just wondered if clavicle pain is common? I have it after a busy Christmas and it's a new area of soreness for me. I've been on 9mgs for almost a month ready to reduce next week.

[PMRpro Ambassador in reply to Hirwaen]

I discovered it mentioned in an imaging paper (no, don't have the reference) some weeks ago: typical places for pain are just below the bulge at the top of your arm and the top of the bicep and also in the "salt-cellar" bits above your clavicle/collarbone. Both places I get twinges when I flare - I was relieved to discover it wasn't unusual!!!!

[Sunnyd7 in reply to Hirwaen]

Clavicle pain was the first symptom I had that was different from other pains I had experienced. Then the hips came. Then the horrible stiffness and not being able to put my shirt on, take it off and forget about the bra or combing my hair. I notice that this pain comes back if I play with my grandchildren to much. But it is so hard not to as I love them so much.

[Hirwaen in reply to Sunnyd7]

Lifting 2year old Erin over Christmas is probably the cause, I'm her favourite at the moment and she is hard to resist!!! Thanks again for info.

[Hirwaen]

Thankyou PMRpro, I knew one of you guys would have some info.It must be a result of overdoing it but worth it cos Christmas was great!!