PMRGCAuk
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Question

Not sure where to begin. Bottom line GP put me on 20 mg n told me to taper as I felt need to. Even on the 20mg didn’t get full relief from burning legs, ankles , feet and but. I continued the 5 week plan and dropped to 18mg. Now I need to drop again and developed horrible night sweats. I thought it was the flu ( now don’t think so). Should all the symptoms from the PMR be gone before I taper anymore or stay on the 18mg? Is the night sweats from the PMR or GCA or the prednisone? I was suppose to see GP this coming week but he postponed visit for a month. I was diagnosed one year ago n treated for both with 40 mg to start. Had most of symptom except high jaw pain, every thing else though. Didn’t have any test to confirm it. I’m just looking for a little quality of life here and wanting to get back to a little physical exercise. The weather here is about -10 below today! Not going out there! Just want to be better by June, grandson will be graduating from high school n I have a quilt that need to be made n delivered by than 🌻before he goes off to college. Thank for listening.

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I had dreadful sweats with pred, they are better now at a lower dose though. I prefer not to reduce until I feel OK to do so. Very few people have no symptoms at all even taking pred, but we should aim for at least 75%. Some of your symptoms are not typical PMR, do you think they may be something else?

You can always take a little exercise, keep it gentle, initially at least, yoga and Tai Chi seem to be good.

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I'm a bit confused - you were on 40mg a year ago but you say "the GP put me on 20mg and to reduce as I felt".

You may not be totally pain-free - but you should stay at the starting dose until the symptoms for which the pred was given are stable and improved as much as possible. That is then generally your guideline - you reduce slowly to find the lowest dose that gives the same level of symptom control.

But burning feet and so on aren't typical of PMR - is that what they are saying it is?

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Yes, I started in January @ 40mg for 3 weeks than he had me drop ,I got down to 4mg. and lots of side effects so we talked it over n he had me go back up to 20mg in November. Did that for a couple of weeks n now I’m at 18should I stay there or go down 17mg. Are sweats the prednisone or the PMR. I’ve never had them before

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If your diagnosis was GCA you were told to reduce far too quickly - no wonder you had problems. You have to get your PMR symptoms under control first before thinking about your reduction. You have to let your body settle down so you (and it) know where you are. Then you can concentrate on reducing - very slowly. If you have problems then 1mg at a time at this level is advisable as is spreading any reduction over a few weeks:

This is one way:

healthunlocked.com/pmrgcauk...

which is being used in a clinical study in the north of England. Other versions of a slow reduction are available. They sound slow - they aren't slow when they work and you don't end up going down and back up over and over. And you tend to feel better as well.

Sweats can be either or both - I know, very helpful, but that's the way it is. They can be a side effect of pred but they are also part of PMR for some people. I don't have much problem with the pred except about 2 hours after taking the pred - when it gets to the peak level in the body. But then I get "glows" at all sorts of times if I have reduced the dose too far which reflects the inflammation in the body I suspect.

You might find this interesting:

rcpe.ac.uk/sites/default/fi...

This is a paper by the Bristol group which is aimed at GPs to help them diagnose and treat PMR and GCA more confidently and using a scheme that results in fewer flares due to reducing the pred dose too fast or too far, which is the primary cause of flares. It emphasises the minimum duration of GCA - 2 years plus. It isn't a race to zero.

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Yes when I went back to GP n he told me to go back up to 20mg I told him about the deadly Slow n nearly stopped Plan he told me to try it so that’s where I’m at. The night sweats, your probably right about the timing of them. I take my prednisone @ 2am I usually fall right back to sleep but wake soaked. list just goes on n no one close to me is very understanding Thank PMRpro

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Yes - sounds about right, But you aren't being deadly slow if you are already at 18mg since November!!! Give it a week or two at least and see if you feel any better before trying another 1mg. But some people struggle with anything more than 1/2mg - we are all VERY different!

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Yes, that’s what I’ll do and just one mg next drop in a week or two. Thank you n appreciate your advice 🌻

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There's no rush - this isn't a race. Don't start on the next 1mg until you feel stable.

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I tried two weeks of taking enteric coated pred at night (again) before xmas. I had terrible night sweats . Last Thursday I turned over and it felt like a thimble full of water trickled from head into my ear. Not pleasant. Have gone back to mornings. At least the sweating doesn't wake me up! I do think that I over did things on back of flu and my thighs are inflamed and sore. It seems to be my go to sign of flare. So having written that and realised that I was going to try a taper of 1mg I may do either nine or 0.5mg and see if legs ok. I did have massive adrenaline shot yesterday when car failed to stop at red light in snow I almost skidded into traffic. At last minute I kerbed it in nearside to stop rather than use 1 ton truck hurtling towards me. I need new tyre now cos got big bubble in it. 👀🚗❄❄

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Hi marya

I believe one of my first symptoms of PMR was painful burning feet when doing shortest exercise. Once on pred this eased a bit for a week or two but as my blood sugar numbers rose I couldn't even bear socks on as seams felt like cutting into feet. Pain and burning eased dramattically once blood sugar controlled, BUT had diabetes prior to PmR.

I hope you find a diagnosis or dosage that helps you feel better. I reduce really slowly and have sat at 10mg for a good four months waiting for symptoms to settle. Having had good stress and bad stress things in past few weeks, that are hopefully done and dusted, I will be attempting a taper to 9mg throughout January. For me slow and steady is the way.

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Maybe I should have sugar tested when I see GP n see if that’s the problem

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I think they should test it regularly when someone on pred for a while. Even if it's up a low carb diet can have quick impact day to day.

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Ok I mention that to him. Thank you!

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Hi MaryA,

The thing that concerns me about your post are the burning legs, ankles and feet which can be symptoms of neuropathy ( nerve involvement ).

If you have a diagnosis of GCA then you shouldn't be managed by your GP but by a Consultant ( as per the clinical guidelines ) especially as you have never had any tests to confirm the diagnosis and rule out mimics.

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I did have one visit with a Rheumatologist about a month ago. She did order a bunch of test. Not heard back yet

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Well, if that were me, I’d be chasing her office for some answers!

Although Keyes says you should be treated by Rheumy, that’s not always the case. I was diagnosed by Ophthamologist (long story -see my profile), referred to Rheumy by that Dept. I saw the Rheumy once, six months after diagnosis and he told me GP was quite capable of treating me. My GP and I had already agreed a tapering plan, and Rheumy was happy with that, so I didn’t see him again.

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Hi DorsetLady,

It's not me that recommends that but the evidence based BSR clinical guidelines. It's especially concerning as a diagnosis of GCA depends upon all the mimics being ruled out as well.

Lots of things aren't " always the case " in medicine unfortunately but I still think they should be strived for if there are evidence based clinical guidelines in place.

No other Vasculitis variant would be managed by a GP as they are rare and complex diseases, why should GCA be any different?

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No I didn’t mean you recommended it, but that you had commented on it.

If you know my story if GCA you’ll know it did not follow the rules - or maybe that’s just me!

I pushed for a Rheumy appointment for a long time after diagnosis, but when I eventually saw him, he was disinterested to put it mildly. Whether he was miffed because it was diagnosed by a junior Ophthamologist or what I don’t know, but I got the distinct impression he didn’t want to know, and was quite happy for GP to treat me - so that’s what happened.

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Apart from anything else - he couldn't ride to your aid on his white pred charger and intervene to save your sight. Just watch on as you reduced the dose. So why should he be bothered?

I don't think the average GP is capable of managing GCA either - but I have come across rheumies who were even less able.

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MaryA - your symptoms/experience/ time scale are all very similar to mine. I spent yesterday on the sofa all day unable to do anything but sleep. . Felt awful plus burning in feet/legs and wrists etc. I liken it to a hot electric wire threaded through the marrow of each bone! I also have GCA and diabetes. Personally I think the rheumy s and GPS are at a loss with this disease and don't know what more to do. By the way I watched/nursed both my parents and mother- in -law cope better than I am doing - they all had PMR .

I try to start and end each day thanking my lucky stars that I don't have a life threatening disease and I am truly grateful for that but ........

Happy New Year everybody!

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Is your diabetes long-standing? Have they checked for diabetic neuropathy - the vasculitis could make that even more likely.

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I surely am going to check this out tomorrow when dr’s office opens. I had the burning now for 2 months with no relief. Don’t know where my brain is sometimes.

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Yes diabetes is long standing and I see consultant and diabetic nurse this month so will discuss with them. Thank you I had not connected these pains with diabetes.......

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Before being diagnosed I had extremely severe nightsweats. When I went on the pred they stopped. I did notice them creeping back as I reduced the pred! When I was off the pred briefly a couple of months ago - the sweats came back very bad again - so its probably inflammation still there! But everyone is different of course. I also have a lot of leg issues - pain and burning painful feet. Though the feet burning was very severe when I started th pred also - so was in some way a side effect for me at that time. It can be a bit of a minefield trying to pinpoint whats what!

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