PMRGCAuk
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Pred yo-yo?

Hi there,

My name is Claude I am 53 an artist and yoga teacher and have been diagnosed with PMR just before Xmas 2017. I have since contributed here and there but not formally introduced myself. I am very impressed and comforted by the level of knowledge and support by everyone on this forum. It has been a great help to me.

I have been on pred 15mg since 15th Dec then went down to 12.5mg and then 10 for one week.

My main symptoms have gone (shoulders and hips) but I am left with very bad fingers in toes. On the very wise advice from Jgyles and pmrpro I went back up 1mg (1.25 in fact) It will be a week tomorrow. It is a bit better but not gone completely.

Yesterday I tried to do 12.5mgin the morning and then 1.25 (1/2 a 2.5mg pill) at midnight. I think there was an improvement this am but had real trouble sleeping. Not sure it could be the pred (such a small amount) or me just being restless...

Any suggestions as to the way forward, shall I stay at 13.75mg for another week and try to see those symptoms off or start to tapper again?

Many thanks to all

C🙏🏼

18 Replies
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Hello ClaudeV and welcome to the forum. I have to say that at your stage of the disease I had barely begun to taper from my initial dose of 20 mgs. I wanted to wait until all the inflammation had completely settled then I tried tiny tentative taper down of 1 mg once a week then twice a week and so on until I had lowered to 14 mgs. This gentle, slow way of tapering has got me to 7 mgs without much bother, I recall that getting below 10 mgs involved a few stops and starts. Tiny amounts of Pred have an amazing effect.

Your finger and toe pain seems unusual to me. My finger pain is arthritic not PMR and my foot ( not toes) trouble pre- dates PMR. I wonder if you have something else going on too?

I wouldn’t be keen to decrease my dose until I felt stable. It may be that you have been underdosed from the beginning. I would have a discussion with your doctor ( I hope you have a good one).

I solved the sleeping in the early days by taking 10 mgs of Amitriptylin an hour before bedtime. At my current dose and stage , I sleep in the afternoon and pretty well through the night. I was diagnosed March 2016 and am now tapering down to 6 mgs with some difficulty.

Very best wishes Jane.

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Thank you Jane, I know the fingers and toes thing is funny. But the more I read on the forum the more I see that it affects other prm sufferers as well.

I am only followed by my gp. She doesn’t want to refer me to a reumy yet as she reckons my case is straight forward... I have a private cover (not great) but have exhausted my outpatient limit by going to see everybody to find out what was wrong with me. Now I know. Anyway it renews at beginning of April so I will definitely go and see a rheumatologist then...

so maybe I shouldn’t try and tapper pred down yet is what you are saying...

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If it was me I would wait and see if my symptoms settled, then start a tiny taper as described on here, if you do a search. Otherwise in my experience, it is doomed to fail. I hope the Rheumie you see really adds value, alas sometimes they don’t.

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I’m sure you’ll have discovered that you are in for at least 2 years at the pred party, quite likely longer. What’s a week?

Get stable and feel in control first.

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You do seem to be reducing quite soon after being diagnosed. It took me 2.5 yrs to get down to zero with a few plateau phases staying on one dose - don’t be too hasty! I have been taking turmeric capsules for hand and finger stiffness and pain - much better after a couple of weeks taking the capsules Before I couldn’t make a fist first thing in the morning- now I can

Maybe check with dr first to make sure it is ok taking it with steroids

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Thank you yes I am doing this too. It is easing up a bit from yesterday and today. It is just that my GP is keen for me to come down as soon as possible. I realise it is not as straight forward...

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I'm sure your GP DOES want you to come down asap - it isn't his decision. PMR/GCA dictate the speed at which you can reduce. Not his imagination as to what is possible.

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As my PMR sisters said, take your time and get pain under control. I had finger pain on tapering. It got better with exercise...touch each finger to your thumb then go the other way, then repeat and adjustment to lower doses. Also, open and close fingers lots of times.

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Thank you Sandy!

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The pain in my fingers due to tenosynovitis took up to 6 months to fade and I must have been at 15mg for at least 2 months. Normal progress would be more like 6 weeks 15 and 6 weeks 12.5mg - these starting doses are to get all the existing inflammation under control and clear it out and bursitis and tenosynovitis take longer than muscles because their blood supply is poorer.

Slow down - you go too fast! A week or two here or there is immaterial in the great tapestry of PMR and if you have a fairly compliant GP - I wouldn't be in a hurry to see a rheumy unless you have problems. Are you aren't yet.

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Thank you PMRpro, it is good to put things in perspective... I am already worrying about getting my body’s ability to produce its own steroids again...

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You may have a long journey to get that far so don't build castles in the sky, it only leads to disappointment when you can't comply with an unrealistic timetable set by someone who has no idea what PMR means in practice.

I don't want to put in a downer but being up-front is my line: PMR lasts an average of 6 years, with a variation of maybe 2 years to for life. And the impression we get on the forums is that hurrying to reduce the dose of pred often results in not only a harder experience but also a longer one in some cases. For back-up to my statement read these, same research, different aspects, and show your GP. It is from a top Mayo Clinic PMR expert who is concerned at GPs (and rheumies) denying their patients the dose they need:

medpagetoday.com/rheumatolo...

practicalpainmanagement.com...

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Thank you PRMpro this very useful

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Hi Claude V. I have had numb and tingly hands from the first day I took steroids 20mg nearly 2 years ago. I find it difficult to pick things up. I am on 3mg and they are perhaps slightly better but not much

Have had tests done and there is no damage to the nerves so I am convinced the steroids are to blame. Hope it all goes away eventually. May

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Thank you May, the GP seems to blame the steroids as well 🤔

I am sorry to hear that your fingers still bother you even after going down... mine are not exactly tingly but very swollen and painful in the morning then the pain eases off but still swollen. Also I have a very similar thing in my toes and that started as part as PMR. Actually that’s what made me go for a blood test as I couldn’t walk anymore... this is taking forever to go it seems but definitely improving. Thank you for sharing, I have to be patient I guess at least I know what’s wrong now. It was very scary not having a diagnosis and slowly losing all my mobility...

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It may be pred - but it can also be the PMR or a related disorder called RS3PE syndrome.

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Hi Clayde,

All the others have given good advice, but maybe a read of this will help you understand your illness a little better, and totally agree slowly is the way ahead...

healthunlocked.com/pmrgcauk...

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Thank you guys for these inputs! Shall read with all my attention

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