Hello everyone. A month ago I finished a slow taper from 3 to 2 1/2 mg. I was feeling great - no more pain. I was traveling overseas when I finally got to that 2 1/2 mark, still feeling great. Once home, I was profoundly exhausted but still no pain so figured it was just the stress of traveling and jet lag. However, after a couple of weeks at 2 1/2 I started experiencing the familiar neck, shoulder and hip pain - not as intense as in the beginning, but enough to wake me up at night. I have been waiting to see if adrenals just needed time to catch up but even with 1/4 mg. (try measuring that out!...) increase and a tiny improvement I am still in pain and considering upping my dose to 3 mg. again, as I felt so good at that dose. Not sure what to do. How long do I wait to see if adrenals need time or if I am, indeed, flaring at 2 1/2 mg. and need to go back to 3 for a while. I'm so disappointed but tired of the pain. Comments and advice are needed and appreciated... I am so thankful for this forum!
Confused and discouraged.: Hello everyone. A month... - PMRGCAuk
Confused and discouraged.
Sorry you are having to deal with return of symptoms. Am seeing rheumatologist tomorrow. At 5 mgs pred. I don’t care if I get lower. The pred has already damaged my skin terribly. And has given me diabetes.
Pain from the PMR and pain from the adrenals having to spring into life is actually different to each other I found. If it is PMR pain you need to increase by say 5mg for a week or so and ensure things have improved then reduce say back to where you were last OK. If it is the adrenals you can stagger on or increase one or two mg.
You may have over shot your ideal dose. I would return to 3 mgs to see if that does the trick. It is key to go very slowly at the low doses. I think you are doing well and your instincts are pretty sound. Be patient, you’ll get there. 3 mgs is a pretty harmless dose.
Thank you for your thoughts and suggestions.
If you act now, you may find that 3mg is enough, hope so. But if not, you may need to treat as a flare as described in link -
healthunlocked.com/pmrgcauk...
- and then back to 3mg.
Would just say I never reduced just before or during a holiday - enjoyable as it is may be, it’s still out of your normal routine, and likely to be increase in stress.
Agree with piglette the effects of adrenals struggling and a PMR flare are different. And agree with you about pain…so get back on track..
Thank you - I will.
Is that "familiar neck shoulder and hip pain" improving or getting more? Anything steroid withdrawal related should at least stay stable but usually improve over a couple of weeks. Flare is even slight worsening.
You recognised it as PMR pain...and that's what it is. Follow the advice given above. It happens to many of us...and very often...zap it fast and in a while you can try a very slow taper again...you are already on a low dose...so really no rush. It is not easy. After 5 years I reached zero pred about a month ago and worry that every twinge means it is returning....and I am still fighting for energy.
Thank you for the encouragement and advice.
I can’t advise you what to do, but from your description, it sounds like PMR is bubbling away and it’s on the move. In your situation, I’d increase the dose to 5mg for a few days and if it improved, I’d try dropping back to the 2,5 or even 3 where it was stable. That may be a long term maintenance dose you need. PMR doesn’t play by the rules but you should be really pleased to have got so low and recognised an issue. Good luck.
Thank you so much for your comments and good wishes.
I was in similar situation down to 4mg and tapering too fast to 2 mg on doctors advice. I wish I acted faster when I noticed unexplained shoulder pain 6weeks ago and thought it must be something other than PMR. Doctors also thought arthritis. So kept working towards 2mg. Pains slowly increased down 1 arm and then both arms to the point where I knew it was a flare. So now at 10mg again trying to knock out inflammation for the next 7-14 days until I try to reduce back to 5 mg. So frustrating.
I had a very stressful family situation end of April which I believe may have attributed to this flare. I had been flare free for 1.5 years during in a very slow taper so it really through me off.
Thank you for your insight and thoughts.
Sorry you're struggling at 2.5. Sounds like what happened to me when I tapered from 4 to 3 (Medrol) and after 3 weeks had to go back to 4. After three weeks back on 4, I reduced to 3.5 (over a month ago). I was doing well initially with just a couple of "bad days" but 3 weeks in I started having debilitating fatigue, I'm lightheaded, and having dizzy spells. No pain or stiffness or signs of a flare so I'm resisting upping my dose again although I can't live like this much longer. If it is "only" adrenal fatigue I'm wondering if I increase again will I have to go through this again next time I decrease. If I don't increase, wondering how long this will last.
It is impossible to forecast - that is the problem. However - did you use one of the slowed tapers or did you drop from every day old dose to every day new dose from one day to the next?
I went from 4mg/day to alternating 4mg/3mg about 32 days ago. I'm not sure if that's considered a slow taper? Not getting great advice here from my rheumatologist. Thanks for your reply!
We don't like the idea of alternating between two doses over a prolonged period. It seems to confuse you body without you really progressing. We like an approach where you challenge the body with the new lower dose for one day and then increase that challenge over a few weeks - or longer.
Look in the FAQs under Tapering for more details. The link to FAQs is at the top of every thread, below the post.
Thank you for the advice! I'll check out the link and try that approach.
Unfortunately that’s a bit of a how long is a piece of string question…. And yes it’s quite likely that if you increase back to 4mg you may go through it again when you try and reduce.
Maybe try 4mg again… but stay on it for a few weeks even months to give the adrenals time to catch up…
But as you only seem to have been diagnosed in late 2023, would say you have rushed down your taper too quickly which may well be adding to the issues of why your adrenals are struggling to get going again. For most patients [although not all] from around 7mg you need to follow a very slow tapering plan with small steps to allow them to be nudged into working again - they don’t just switch on like an electric light.
Think more old fashioned covered wagon than modern Indy car!
Haha, sounds like very good advice although I do everything fast and furious (at least I did in my pre-PMR life)! I'm going back up to 4mg and I just may stay there through the summer and wait until September to taper again. Thank you!
Sounds like a plan .. and yes most of us were fast and furious-probably why we ended up with PMR and/or GCA,
Mind you some of us have retained our Viking roots - 😊
This disease is so cunning and baffling, not to mention painful and debilitating. Goodluck - I hope you feel better.
Thank you, you too! I increased my steroid back to 4mg and seem to be doing a bit better each day. Hated to give in to it, but I guess it's a necessary evil that I need for now.
It's helpful to hear your questions and the comments. Thank you.
All hail to the Vikings, but damn this inherited disease because it rules.Feeling for you Christi48 because when you feel like good progress is being made with a slow taper PMR has other ideas.
It really is that sinking thought that no matter how careful you treat this disease it simply has no respect!!
It just has the upper hand and I think that's why we often feel disheartened.
Your not alone. Best of luck for your journey, I hope it's uneventful from now on.
It only has the upper hand if you let it. If you dig out your negotiating skills and are prepared to give in to some basics you can live quite reasonably with it.
Have a look at this post which deals with fatigue - and accommodation of a gorilla in the house ...
healthunlocked.com/pmrgcauk......
Thanks PMRpro I will definitely have a good read....maybe discover a secret or two.
Thank you so much for your thoughts and good wishes. You are so right about wanting to believe in progress, especially when following all the rules and feeling "cured". I have been so careful about a very slow taper. It helps to hear other people's stories. Good luck to you as well...
It's comforting to know others understand my feelings and to have support. Thank you.
To be truthful Christi48 I have never met anyone with P.M.R. and it's quite a lonely space as it puts me in a corner of trying to explain myself on occasions which understandably no one 'gets'.So this forum is helpful to me and I'm sure glad I was able to offer you a little support as we all need it. You be kind to yourself dear girl. Take care, and all the best.
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