PMR BURNOUT

[66Mac]

Hi everyone ,

Having read a few posts about tapering , pred etc I am just wondering how do you know when PMR has finally burned itself out ?

[SheffieldJane]

I guess when you are off Pred completely and there are no PMR symptoms. It will be hard to tell though, what with withdrawal pains, the re- emergence of old arthritic pains and a certain amount of muscle weakness that will have occurred. I am guessing that if you are doing well on low doses it would be helpful to be building up a programme of exercise at the same time so that when the disease leaves, you actually have some fitness to work with. Blood tests should also show that there is no inflammation but as you know, that is not definitive.

It would be nice if we woke up one day, stretched and said "wow it's gone!" But alas I don't think it will be like that. I hope somebody comes along to contradict me.

[Gaijin in reply to SheffieldJane]

I think you've said it perfectly. Thank you, Jane.I had always wondered that, too.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Hi Jane,

Actually I'm going to!

As I've said before when I was on 1mg and 5.5yrs in on my GCA journey one say I suddenly felt 'different" - not very medical I know, but just as if a weight had been lifted off me - metaphorically if not literally!

I didn't dare believe at first, but that feeling stayed with me. Unusually for me - I must have had my sensible head on at the time - I decided I wouldn't rush things but continue my slow taper to 0.5mg then zero. A few months later I was off Pred, and fingers crossed no symptoms since.

However, as I've also said before I think GCA follows a much more regimented formula than PMR, in that once it's gone, it's gone (🤞) whereas PMR does seem to have a tendency to re-occur, resurface!

Maybe I was lucky, but I think my slow reduction plan, which gave me no flares, probably aligned with v.high starting dose sorted the GCA out good and proper - once I was on it! But that's another story 🤷🏻‍♀️

[SheffieldJane in reply to DorsetLady]

Thank you for the hope DL. I mean that would be so yay ! 💥

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

It will be one day!

[KaseyP in reply to DorsetLady]

It's exciting to hear that you are so very close to the PMR burnout DorsetLady! I want to follow that slow taper in your footsteps! SheffieldJane, I like that "Wow, it's gone" picture. You girls give me great hope. Thanks to you and all the Aunties for a place that helps get us through this journey.

[DorsetLady PMRGCAuk volunteer in reply to KaseyP]

Hi,

I had GCA not PMR and have been in remission for about 18 months now.

[KaseyP in reply to DorsetLady]

Even more impressive since you had to start with a higher dose of pred!

[Lyn_seaside]

I don't know if this will help, but I'll tell you what happened with me! I came off Pred very gently last year after around two years of PMR, took my last one in June, but had to go back on in November (only up to 5mg) as I gradually stiffened up and realised that I couldn't live my usual (very hectic and energetic) lifestyle any more. Took Pred over the winter, gradually tapering again and took the last one again in May this year. Completely different experience. No PMR pain at all during the day and the only symptom I have is a slightly sore neck in the morning. By the time I've had a warm shower that's disappeared. I'm working on the basis that when that last bit goes, I may be clear. I have no pain, can walk 15 miles again with no ill-effects and run my very busy business with no problem. I rarely sit down! I'm 61 by the way.

I know I'm lucky - and I didn't have the crippling fatigue that some do, but this may be encouraging. There can be light at the end of the tunnel!

[Sheilamac]

Hello! I'm at around 4-4.5mg at the moment and I have a strong suspicion that my PMR has gone into remission. I haven't had PMR pain for a long time but it's clear that my adrenal system has become very sluggish so when I try to reduce to too low a level for it, I hit a wall of fatigue and feel very unwell, so I quickly go back to where I was for a wee while longer. I am sure that if they would get their act together, I'd be able to taper right down.

So, what I'm saying is that in the absence of flares when tapering and no annoying niggles of that very recognisable pain plus normal CRP results for years, I am concluding that it has either gone back to sleep or is in a very heavy doze. (I hope that I am right, nobody really knows..)

I am attempting to increase my exercise levels because I know that my muscles are weak, getting ready for yet another new normality sometime next year!

I've had this condition for 4 years next month and been diagnosed and on steroids for just over 3 years.

Hope my experience helps a bit.

[HeronNS in reply to Sheilamac]

Well, at 2 I rather wondered if PMR had gone into remission. I'd no sooner got to 1.5 than my doctor suggested I finish up my tablets, stop and see what happened. I had enough tablets to do the fast version of DSNS to zero, so with some misgivings I thought I'd try. After two attempts (stupid of me to try once, twice was really dumb) I was in a pretty bad way. Have gone back to 3, where I was last year at this time, and any attempt to reduce back down to 2 or 1.5 will occur with caution! It's so tempting to be lulled into believing the disease has gone into remission when pred is controlling it well, but it might just be that a person only needs a tiny bit of pred to carry on, but PMR is still lurking, waiting to pounce.

[66Mac in reply to HeronNS]

Exactly the same strategy I was thinking about , probably better to take my time ,after reading that . I'm just impatient and want to get back to my old life .

[PMRpro Ambassador in reply to 66Mac]

But being on a low dose doesn't stop you living your normal life - doesn't stop me. Just because you stop pred doesn't mean you are immediately as you were pre-PMR. It takes a good year for your adrenals to recover - and you are a few years older than you were before with a fair time where you haven't been active probably. But at a low dose of pred it isn't having a lot of effect - and you can start increasing your activity level at any stage.

[DorsetLady PMRGCAuk volunteer]

Hi 66Mac,

Short answer - when you stop Pred and no symptoms return.

For a lengthier answer - see my reply to Jane.

[PMRpro Ambassador]

You are able to reduce to zero pred with no return of symptoms. That is the only true test - and I don't care what ANY doctors try to make out that a patient on pred, even only 1 or 2mg, with normal blood markers and able to lift their arms is free of PMR. All that means is the activity is very low and such a low dose is enough.

[nuigini in reply to PMRpro]

There are questions I’d like to ask, but I’m not quite sure how to put them. This may be a bit convoluted but, here goes….

In situations where fatigue is the main symptom as one reduces to levels slightly above or below the physiological level of 7 mg, how do you determine whether the fatigue is caused by PMR or slow adrenals?

For those that make it to a low dose like 3 mg and find they must remain at that level, is the prednisone supporting weak adrenal function, or keeping PMR at bay?

I’m asking because fatigue is my main symptom or reduction. As I drop from 10.5 to 10 I find my energy level isn’t the greatest, but ‘okay’ in the morning. However, energy and motivation drops by early afternoon.

Eileen, you have indicated previously (can’t remember where):

“The adrenal adjustment may start as soon as 10mg for some people as we all absorb different amounts, from 50% to 90% of the dose, and if you are a 50% person your adrenal glands will have to contribute a bit to the effect at 10mg.”

I think that’s what’s happening with me. If so, I assume it’s OK to continue unless other symptoms of PMR rear up. However, if the adrenals aren’t starting up, is there a risk of a flare because there’s not enough prednisone in my system to keep the flames out?

[PMRpro Ambassador in reply to nuigini]

I don't think it works like that - the pred combats the inflammation by its presence - but it isn't used up in doing so and is still there to do its bit instead of cortisol.

The fatigue of poor adrenal function will increase as you reduce the dose, the fatigue of PMR will remain similar to what it has always been. The fatigue of poor adrenal function SHOULD improve with time at a steady dose - and that is the recommended way to deal with it: you spend several months at (say) 5mg (if you can get there) and over that time the adrenal fatigue should improve. The pred doesn't affect the underlying disease process, just mops up the puddle it makes.

There is no real answer to the 3mg question - I might need it for managing PMR, you might need it for adrenal supplementation - and someone else might need it for both.

[nuigini in reply to PMRpro]

Thanks PMRPro.

I always have increased fatigue when attempting to drop so I guess that's the case right now. As before time to stick it out and hope for improvement.

On the 3 mg question, I figured the 'answer' was different for everyone. PMR has to keep us guessing all the time with no easy answers to many questions.

[BonnyQuine in reply to PMRpro]

Thanks.

[RheaV in reply to PMRpro]

Is there any way to strengthen the adrenals as the pred dose gets smaller? Any foods/supplements/meds? Thank you.

[PMRpro Ambassador in reply to RheaV]

No - they will start to function as you reduce the dose just because they are stimulated by the lower dose of pred not being enough for the daily need for corticosteroid. It isn't that there is anything wrong with them - just like your boiler doesn't heat the central heating when the thermostat tells it it the room is warm enough. It is quite unusual for them not to take up the slack although it does happen. Don't believe all the stuff on the internet about diets and supplements to improve adrenal function - all they do is strengthen someone's bank balance and weaken yours!

[RheaV in reply to PMRpro]

Thank you! That's the beauty of this group--answers are given in everyday language instead of clinical language!

[BonnyQuine in reply to nuigini]

Snap. I'm at the same level, with fatigue as the most bothersome symptom, and this is the sort of thing I wonder about too. However, I assume that if I persevere with DSNS, sooner or later some degree of energy + motivation will return to stay. I do get occasional short bursts but so far they never last.

I'm hoping for an outcome like DL's, but Sheffield Jane's summary sounds realistic. Have noted the advice re gentle exercise and am trying. Short walks are better than nothing. Gradually managing more . . .

Cheers all.

[PMRpro Ambassador in reply to BonnyQuine]

Lots of short walks work out the same as one long one...

[66Mac]

Thanks everyone for your replies .

[Burnedoutmaybe]

Hi 66mac

I think the PMR has burned out on me at exactly 2 years to the day...I have spent 2 years battling this autoimmune and it was horrible....when i was first diagnosed at 59 I could barley walk...or get up from a seated position without a struggle..it attacked my thighs..knees...hips..pelvic area..lower back..upper arms...shoulders and neck..prior to the prednisone and my diagnosis i was scared I would end up in a wheel chair and no one would figure out what was wrong with me...I finally walked into the ER and the doctor listened very closely to my symptons..reviewed my history of 3 other autoimmune diseases in the past..ran extensive blood and told me to see a rheumatologist... finally after 4 months of suffering I was diagnosed with PMR. The steriods worked within 24 hours..i went though all the side effects of which i won't list...after 2 years of steriods and methotrexate..this is where I'm at today..4 weeks ago i was down to 7mg..all of a sudden I had a severe attack to those specific muscles i listed above..i was in so much pain I wanted to rip my muscles out of my body..I almost went to the ER and it lasted 2 days. I emailed my dr. And she wanted me to go back up to 10mg...i wanted to cry..i didnt increase it..i took pain meds instead..after the second day i felt it leave my thighs..then my my hips..lower back next..the next day it left my arms and shoulders...i went to the dr. And told her i feel different in my muscles and body im actually have zero pain..so now im dropping steriods 1ng every 2 weeks. Im at 5mg today and not one speck of pain for the first time in 2 years...i truky believe that was the grand finale of it trying to attack me and then burned out..I feel great and next week i will go to 4mg ..im excited and hoping its GONE! I will let you know each week as i decrease if it has burned out..I'm praying this is it!!