Just had my morning coffee with all of you, such a good community to spend time with.
I started 15 mg pred. in September 2018 for PMR. Upped to 20 mg the next week, which worked a charm and felt like a miracle!
Had been slow tapering until 10 mg around Christmas, again feeling pretty darned good. Thought I’d stay at that dose for a couple of weeks, didn’t want to rush things. Started getting achy shoulders again. Upped dose to 11 mg for two weeks, no help. Then 12 mg, no help. Am now at 12.5 mg, which was the last effective dose I was on. Shoulders still complaining, more constant now. What direction do you think I should go? The ache is tolerable, a reminder of what was but not unbearable. Should I put up with it, or is the PMR overflowing in the background, doing damage I can’t see?
I’d appreciate any advice, opinions, you can give. Thanks
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Evercurious
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I'm wondering if a puddle of inflammation may have formed while you were on 10mg so now 12.5 isn't quite enough to mop it up although it may be a good dose for you if it didn't have to cope with the 'extra'. What I would do...and this is just me and only if you're comfortable with self-prescribing which it sounds like you are...is go a bit higher for a short time...15mg for a few days? If that does the trick then you can come back down to 12.5 and see how that goes. Then if you're happy on 12.5 you can take it from there and try a slower taper...baby steps! Good luck!
I think I would do what xdbx suggests. Seems to me you may have overshot the level of pred you need to keep the pain at bay.
If you do try 15mg, and it works, then I would be inclined to stay there for a couple of weeks or even more. Then, when you taper down again, come down in smaller doses - 1 mg at a time, or even a half.
Also, I wouldn't try to taper unless you really feel comfortable about doing so.
I would dispute the term "slow tapering" to have got from 20 in mid-September to 10mg by xmas!!
Most good doctors would have kept you at 20mg for a month, 17.5 and 15 for a month each. When you hurry down the stairs you don't know where it went wrong when you fall on your nose!
Great you have been experiencing a miracle. Pred needs some good press occasionally! Just a thought, are you doing more all of a sudden because you’ve felt better. Don’t forget Pred does start to weaken the muscles.
Ok, you might need to have a rethink so you can build in recovery for your muscles. If it is muscle strain you’re experiencing, just upping the Pred isn’t the answer because it’ll just help make your muscles weaker. If it is PMR flare then I’d plan ahead to keep those muscles working for you but you’ve got to help them.
All the time I’ve had PMR, 4 years, cleaning has been a no-no and we were in a financial position to hire a cleaner. Maybe your job is causing the shoulder pain. Valerie
Guess that’s my problem, don’t know if it’s a flare or what. Just reread my diary and seems my shoulders have been a slight problem all along. I don’t notice any muscle weakness day to day.
I was a pharmacy tech for 20 years, had to change “ careers” when my lack of night vision prevented me from driving back and forth to work ( I live in the country). At 66 years of age not many want to hire me - having my own cleaning business has worked very well.
When I read accounts of other members experiencing different levels of pain I wonder if my expectations are too high.
That’s the problem, putting across pain in a post is very difficult and in the end, only you can tell. I only have GCA but have worried occasionally that I’m getting PMR when my shoulders get upset. If a Paracetamol or the very occasional Ibuprofen ease it and it goes in a few days, I don’t worry. You don’t always feel weak as such, but the muscles become much more easily strained and you don’t always see it coming. I also get shoulder pain with withdrawal too.
You’ve got advice from all angles in these replies here, so good luck with it.
Yes, Evercurious I think they are! You have what sounds like a hard job, not much rest there. If it was me, I'd up the pred to a level where you feel "pretty darned good" again and then re-start the reduction at a much slower level. It's taken me almost 2 years to get from an initial 15mg, then increase to 20mg, now at 2mg and, from what I've read on this site I've been very lucky to get this far so quickly. The words of others i.e. "It's not a race" ring loudly in my head and, finally, I listen! Just be kind to yourself. Maybe try reductions at half a mg a time - I'm a dab hand at this pill cutting lark! Good Luck and I hope you're painfree again very soon.
Took me 10 months to get from 20 to 10mg. Tried GP reduction, similar to yours, failed. Tried rheumi reduction, failed. Went 1mg at a time then when I was ready, now down to 6mg, has taken a year to get here from 10mg, and I’m wobbling about trying to get to 5 without success thus far. I’ve not managed to reduce any quicker with doctor ‘interference’ but it has caused me added pain and at times despair.
Have you thought that your shoulder pain could be caused by overuse (your job) or be osteoarthritis. Years ago, I had shoulder pain from overuse, cutting down ash juniper trees (small) with a handsaw. Now I have PMR. but occasionally get pain in shoulders from using them more than usual in house and garden. I have reduced to 5mg of prednisone, but may have to either remain there, I was planning on reducing to-day. or even go up. I've been doing a lot of walking the last three days, and yesterday ate 2 1/2 very sweet cookies a friend had made and in evening drank a small glass of wine, knowing that sugar is a definite no no. Last night had some leg discomfit.
With each new member signing on to the forum, I am always dismayed at the mad scramble to begin tapering Prednisone. I did it also!!
At that early stage, we have not yet Learned that PMR and Prednisone have become part of day -to -day living, for half a decade and longer. Just for the record, recent information is that PMR lasts 5-6 years.
In my 5+years experience...taking longer periods of time between each taper step Has been most successful for me. In other words, taking a month, or more, between reductions has worked better for me, than taking the next taper after just a couple of weeks at the new dose.
Like most of the longtimers on this forum, I have experienced flares caused by too rapid taper, life and family stress, illness, holiday, and all the other things that are part of living.
So, my thought for you...slow down, relax, and learn to live with PMR.
In time, you will be able to read your body responses, and sense when you are healthy enough to undertake a new taper. Likewise, you will recognize when you need to use more prednisone for a period of time.
This forum has been lifeline for many of us, with Wise ones who have walked before us, and researchers and advisors, whose information is carried back to the forum.
So, Pull up a chair, pour yourself a cuppa, and settle in for the journey.
I wish it was compulsory for every PMR diagnosis the doctor gave you the link to this forum. So many of us stumble around for months following GPS tapering recommendations without success and it can be a dark time. I had no idea what was really happening to me until I started to investigate myself and a fellow sufferer told me about this site at a local support meeting. What a godsend that was.
Diagnosis March 2016; started on 20mg; currently on 10mg after many, many ups and downs. Two new drugs added to my cocktail in past three months. I reckon I’ve still got a bumpy ride ahead but thankfully I’ve found this support group. No family or friends can understand or help as much as the lovely people here. Good luck and you will get better at ‘reading’ your own symptoms!
You are so right, Lochy! I found this group early on and spend most mornings reading the forum while having my coffee. The advice is wonderful but the experiences related are what keeps me going on a gray day. No one else quite gets it.........
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