Desperate Sufferer

[csargeant]

Hi lm a newbie as of this pm I’m hoping for advice with my PMR which l have had for about 10 years 8 year diagnosis. I’m 74 yrs so had this since I was 64 When diagnosed l Started off on 15 mg of prednisolone going down than up like a yo-yo lowest level l would say was 5mg. I’ve now gone up from 8mg to 10 mg, no relief from pain thinking of going up to 15mg. l’ve seen a rhyme no help whatsoever only interested in getting me on lower dose of prednisolone but not offering any other form of meds other than Co codamol. I was never told about lower carb diet or that weather can affect the PMR. Any advise would be gratefully received

[Hidden]

Hi... Welcome. I suspect you have put your finger on the main issue... Yoyoing the dose. It sounds like you have had to keep reducing. Did you have symptoms when you did? When you have reduced symptoms have you overdone things rather than pace yourself? That can cause delayed onset muscle soreness where the used muscles ache a day or two after the activity. Even gentle gardening made my arms shake. I have just used otc painkillers when that happens. There's also steroid withdrawal that can be an issue the first 3 to 5 days after reducing. Otc painkillers help that too. However if you flare then it's only pred but sometimes you can do 5 to 7 days of a higher dose (usually plus 5mg) and then drop straight down to the last dose you were symptom free. The problem is you have aged, like all of us, while you have had pmr. Some aches and pains could be down to aging and developing Osteoarthritis etc.

Yes, diet really helps with weight and general feelings of less fatigue. We usually direct people to the site below to help them see what meals they can have on low carb approach. And humidity for me is a killer. Hopefully people will be along with their tips and tricks.

dietdoctor.com/low-carb

[piglette]

If co-codamol is helping the pain, what it is helping is probably not PMR, pred is the only thing that helps.

[csargeant in reply to piglette]

I do agree l get to the point sometimes that I would take anything to improve the way I feel

[PMRpro Ambassador]

Yoyoing the dose does store up problems for later and sometimes they are very difficult to overcome.

However - I am pretty sure one version of PMR is a long term one that you and I demonstrate. I have had symptoms for 15 years, 10 on pred. I was messed about at the start, not being diagnosed and then put on pred for 6 weeks when I got down to 5mg easily but flared big time when it stopped and it was far more difficult to get under control then. Since then I have been down to 5mg, tried 4mg but flared shortly after, Now - no way I can get lower but I have had other problems in the meantime which complicated matters.

I don't know anything other than pred will be worth it - but very patient, very slow tapering might work.

[csargeant in reply to PMRpro]

That’s very interesting to know that there is a long term PMR I’m going to try tapering again as the last resort. I would rather spend my remaining years on prednisolone and relatively active than worry about brittle bones

[PMRpro Ambassador in reply to csargeant]

My attitude exactly!!

[SheffieldJane]

I agree with PMRPro. What about going up to 15 mgs, let things settle, then taper very slowly at 0.5 mgs a month, pausing if symptoms persist. Your Rheumatologist should be on board - this way you might actually get down and stay down.

[csargeant in reply to SheffieldJane]

That’s what I’m going to do. Did see rheumatologist did not offer any advise other than tapering and blood tests found my GP offered more help and monitoring. Thank you for your support

[nuigini]

You're definitely not alone csargeant. I'm almost six years in and have never successfully got below 10 mg, although I did get there and stay there for a couple of months once. Like PMRpro I believe I have the long term type of PMR which increases in activity regardless of my slow and easy .5 mg tapering. I also suspect that I don't absorb the full amount of prednisone. So, I've had to return to 15 mg a few times in the past six years, most recently a couple of months ago. I've been hovering at 13 mg because it seems to be the sweet spot for me, but will have to take the plunge sometime soon I guess.

[csargeant in reply to nuigini]

Thank you so much for your advice it’s a comfort to know that there are others that share and understand your situation

[Susquin]

I too have had PMR long term, I am guessing about 14 years. But in the early years it would come and go, so I put the symptoms down to other things. Three years ago I suffered all winter but was good once spring came and I was outside. Then two years ago it got so bad I could barely move at times and yet could not sit still. I would walk around our pool table all night because sitting and laying down was simply too painful. Started on 25 mg of pred then tapered down to 10, got as low as 4 and then had to go back up to 15, but connected the flare to a meal that I ate that included buns made with bleached white flour and lunch meats, both have always bothered me but together it was too much inflammation for the dose I was at. So am now at 12 trying to get further down again.

[csargeant in reply to Susquin]

I’ve had sleepless night’s these last few weeks on the lower dose of 5mg tried 6mg then 7mg couldn’t stand the pain and sleepless night but hadn’t connected this to PMR. I’ve now put myself up to 10mg which is helping but I’m going to increase until l feel almost human

What’s the point in worrying about what prednisolone can do when without them your life is so miserable

[csargeant]

Thank you for your advice l am going to start keto diet speak to my GP on Fri about increasing till the worst is over. I’ve reach the point we’re l don’t want to go out or do anything as constantly tired and in pain very depressing when friends of same age are out and about and so active

[PMRpro Ambassador in reply to csargeant]

No need to try for totally keto because pred messes that up. Just cutting processed carbs and sugars is often enough.

[csargeant in reply to PMRpro]

Thanks for the tip

[Hidden in reply to csargeant]

Just low carb diet will help. It's much easier to maintain as a lifestyle in tbe long term too. This website is useful.....

dietdoctor.com/low-carb

[nuigini]

Agree with PMRpro about KETO. I actually read that it's impossible to achieve ketosis if you take prednisone. I don't recall the details.

Low carb and sugars, particularly processed sugars are a great way to go, as well as eating "whole" unprocessed foods.

[PMRpro Ambassador in reply to nuigini]

The random release of spikes of glucose into the blood by the liver that is triggered by pred mean you are taken out of keto if you have achieved it - the body doesn't care where the sugar is from, it is sugar and insulin is released in response.

[csargeant]

This is all new to me but will take your advice let’s hope it helps