Hi everyone. I need some advice. I started on 15 mg of Pred on November 22nd I am now down to 6 mg and am due to go to 5 mg in two days. I was doing good on 6mg till day 20. Don’t know what happened but I am in very bad pain across my upper chest and collar bone. Think I might have done a bit to much for about six days before the pain started. I have been in different levels of pain now for five days. Think maybe I should stay on 6mg for a while longer. What advice can u give me. To make matters worse my Dr retired. It is very stressful to find a new Dr. In these trying times. I am 70 years old and feel my life is passing me by for the few years I have left. Can anyone give me any good news of people who beat this PMR. THANK YOU FOR ANY HELP.
Pred cut back: Hi everyone. I need some advice. I... - PMRGCAuk
Pred cut back
If you have pain do NOT reduce, it will end in tears. If 6mg works then stay on 6mg.
Hi TINYdes and welcome to the site if you are new.
I think the problem is that you have tapered down too quickly perhaps, was it November last year? 6 mgs is likely to be your ideal dose if you’ve done well up to now. Your symptoms sound like a flare or muscle pain from doing too much. If the pain continues you might benefit from going up by 5 mgs for a week or so and then returning straight down to 6 mgs and resting there for a few weeks. This can be really effective.
I am sorry you’ve lost your doctor, these things can cause so much stress, I hope your next doctor is a breath of fresh air. I am sorry that you are feeling fed up right now, I hope it lifts soon, it will be the pain and the stress. These are difficult times. I’ve been feeling sorry for the young students confined to their little rooms in university rather than having the time of their lives.
PMR eventually burns itself out for most people, thankfully. Just take good care of yourself and check in here now and then.
Yes it was last November. Thank u for your advice and encouragement.
Many of us are in our 70's and feel life is passing us by very quickly, especially during this awful time of Covid. We don't have time to waste not being able to live our lives in the way we chose, but sadly that is out of our hands until this wretched virus is gone.
Stay on 6 mg and try not to worry. I'm reducing myself at the moment from 40 mg when GCA was diagnosed after PMR in Dec 2019. GCA worries me far more than PMR due to potential loss of vision if symptoms return. I'm currently taking 10.5 mg only reducing by 1/2 mg at a time, and staying on each dose for a month. However, I have some tenderness in my head and wondering whether to go back up to 15 mg. Seeing rheumatologist on 5 Oct may wait to ask him. I did experience tender head on high dose too, so baffled !!
Best wishes
Anne
You've done well getting down to 6mg in less than a year. Don't rush it now - the last few reductions are the most critical. And make sure that you use one of the slow taper plans rather than a sudden drop to a new dose.
It seems that chest pains (Chostocondritis) often accompany PMR and pred. Mine have been on and off throughout and sometimes very severe. I found that ibuprofen helped a lot and folding my arms whenever possible - especially if I cough or sneeze.
You have done well to get to 6mg in less than a year I was on 6.5 mg for nearly 18mths everytime I tried to reduce my symptoms would increase finally 6 mths ago after being pushed by Rheumatologist got to 5.5 with difficulty and had my first flare far too low for me . This was complicated by an OA flare of my rt knee and a mild diverticulitis attack . My CRP 9 and ESR160. Back up to 15mg Pred for3wks taper tomorrow 12.5. Am finally free of pain and stiffness. Bloods today ESR 62, CRP 1 so that a lot better.
We have advocate for ourselves no matter how long it takes thats what it takes, I will not be pushed again into going lower than I think my body can cope with. Rheumatologist was talking Methotrexate because I was stuck on the one dose for so long I am not keen to go down that path!
Stay where you are for now, certainly don’t taper yet. Go up a bit if you need to for a few days and when you start to taper again do it slowly with only .5mg of a drop
Hi,
Reduction has been very quick, as already mentioned.. so now is the time to slow down significantly.
There is no point rushing through reductions whilst your illness is still active- and no-one can tell you how long that is going to be. ....and we don't beat it, we learn to live with it. That doesn't mean life stops, it just needs a slight adjustment and taking the correct amount of medication makes it very easy to control.
Many have got through it, but most probably aren't on this forum any longer. .. however there are a few of us that had GCA - involving much higher doses of Pred - who are still around to tell the tale.... and enjoying life!
My rheumatologist said anything under 7.5 was nothing to be worried about. So stay on it as long as you need to. I am on 5mg after 18 mths and if I am having a bad day go up to 6.5.
"Beating" PMR is achieved by using pred optimally to allow a decent quality of life until it goes into remission. Many of us do just that - but there are also plenty of people who are able to get off pred altogether. There aren't that many here on the forum because they are all away getting on with life without PMR and pred.
To be at 6mg in less than a year is a good result - it takes half of patients 18 months or more to get to 5mg. At a guess though 6mg is just very slightly too low and you would be better on 6.5mg.
If it was me, I would not be reducing steroids at a time when I still feel a significant pain and facing a stressful situation at the same time. I would be tempted to try what Jane is suggesting but only after consulting a doctor and waiting a bit longer. As tapering is inherently stressful, with the pain returning, worries about flares and all the difficulties with low adrenal function, particularly noticeable at your levels, one is tempted (I know I would be) to try to avert a flare too soon. Remember that steroids have masked some of the aches and pains you would have been experiencing for reasons other than PMR, but they are not the medication to use to make us feel no pain, there is a price to pay.
Others have said that 0.5mg reduction may be more sensible from now on; that was certainly my experience.
I do hope you new doctor will be sensitive and guide you through this most sensitive period as well as your previous doctor has done - you are doing exceedingly well, so don't forget that when you are feeling a bit low. The pandemic is a blight on all of our lives, but it is also an opportunity to do things differently, sometimes better.
Good luck and don't give up, you will get better; the pandemic will be over.
Thank you. I can’t get in to see a Dr. Till the end of October. So will have to go it alone with the help of this group. I live in Alberta Canada.
I agree with the 0.5 mg reductions. I was never able to reduce by less than 0.25 mg when I got down to a lower dose. I tried 0.50 mg but I ended up in pain. I also have always divided my dose since taking it once in the morning didn't last all day. Yes, there is light at the end of the tunnel.
I also take some in the morning and again at lunch.
I agree with all the advice you are given here. Personally, I found reducing between 7 mg and 5 mg the hardest. I went up and down for about a year to finally go below 5 mg. I can't say I've ever had a flare, just uncomfortable pain. It's around this dose that your adrenals are supposed to wake up but they don't always do. I believe our bodies naturally create 6 mg cortisol per day, so this is the dose where your body is supposed to start making it's own and not depend on the Pred. You could go up a little on the dose and reduce once you are pain free. You have done really well so far, even though for me the reduction would have been too fast. You are at the low end of dosage so don't worry about side effects. The goal is for you to be pain free no matter how long it takes to reduce and you will get there. I'm at 3 mg now and I feel stronger than ever but I've had PMR now for 4.5 years and always reduced VERY slowly.
Thank u for the advice
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