how long does it take for the extra 5mg Pred to w... - PMRGCAuk

PMRGCAuk

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how long does it take for the extra 5mg Pred to work for a flare.

Sumojo profile image
9 Replies

I was taking 6mg Pred and doing reasonably well. I tentatively began to do an exercise class which is specifically designed for older people. This was the first exercise, other than a daily ten minutes on my stationary bike, since recovering from two major operations on both legs, for complete tears of the gluteal medius and minimus tendons. I was aware of my limitations and attempted not to aggravate my recovery. I managed three classes. At the same time my stress levels were sky high. My mentally sick daughter who always causes me stress at the best of times, became totally unstable and tried to take her own life. I woke up one day last week unable to move from pain and complete fatigue. I’ve increased my dose up to eleven mg Pred which is more than disappointing after six years! After two days I feel much improved but there’s not been a miracle. How long does it take to clear up the inflammation before I can safely drop back to 6mg?

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Sumojo profile image
Sumojo
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9 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

We always say at least a week -I usually recommend 7-10 days but you can stay on higher dose for 14 days without an issue dropping back to just above previous dose. So give it time.. but are you sure it’s all a flare and not also DOMS (delayed onset muscle soreness) from the increased activity.

Sorry to hear about stress caused by daughter - that certainly won’t have helped.

Sumojo profile image
Sumojo in reply toDorsetLady

Thank you for your swift response. I wondered if it was DOMS, I half expected to be really sore but it was the extreme fatigue which made me think it was something else. I simply couldn’t stay awake. I slept for most of Saturday, got up for a couple of hours and went back to sleep for 12 hours with breaks for toilet and medication. I’ve managed today for the first time since last Friday to not have a nap. I went food shopping though and had to come home and have a cup of tea before even thinking of getting the bags from the car. Weak, wobbly legs. Hopefully the extra pred is helping and will continue to do so

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSumojo

Sounds like a combination of both to be honest…

PMRpro profile image
PMRproAmbassador

So sorry to hear all that - hugs for you both.

Sorting a flare can take more than just a few days. But as well as the possibility of DOMS- the distress your daugher's state is causing you will be on top of all that. Those are the hallmarks of adrenal insufficiency too and you didn't deal well physically with that stress, it is a not uncommon effect.

Be patient and put your recovery ahead of less pred. I too have a Long PMR version - and even with Actemra I just manage with 7mg pred. Higher stress - and NOT In the realm of yours - really knocks me for six.

Sumojo profile image
Sumojo in reply toPMRpro

Thank you so much for your reply, kindness and understanding. I’ll try to be patient and get well and not be too concerned about the dosage at the moment. This site, you and the others who contribute so regularly are an absolute godsend.

Cromboy profile image
Cromboy in reply toPMRpro

Hi Pmr pro, I've not heard of the long pmr version that you have...... I keep reading that pmr should last up to 2 years.... I'm 3 years in and just flared going from 5.5 to 5 mg. What constitutes long pmr ... is it just the length of time the disease stays active ? As a long term sufferer, and obviously very knowledgeable about all things related to pmr, could you give your thoughts and any advice on my only being able to reduce to 5.5mg from 15mg over 3 years. Thanks

PMRpro profile image
PMRproAmbassador in reply toCromboy

We have started calling it Long PMR - they were quick enough to coin the phrase for Covid after all. We think anything more than 4-5 years is heading for Long PMR - 4-5 years is a really common duration amongst members of the forum. You could say we are a skewed population and only those with problems end up here - but lots of people arrive here long before that. A lot DO arrive when their doctors had promised them they'd be off pred in a year or two - and they aren't and are being bullied by doctors for not being off pred.

An early paper about PMR, from the 1980s, came to the conclusion even then that there were two groups of PMR patients, one in which pred could be discontinued soon, for many it took much longer. But I think what happened was that people misread and misunderstood the mean of 23.7 months - and that was what stuck.

pubmed.ncbi.nlm.nih.gov/403...

An Italian paper came to the same conclusion

pubmed.ncbi.nlm.nih.gov/344...

The Keele group realised that

"There is also growing evidence that for some people with PMR, treatment is more protracted than guidelines suggest [10, 11]. A recent systematic review and meta-analysis [12] has estimated that 51% (95% CI 41, 61%) of people were still taking glucocorticoid treatment 2 years after diagnosis and 25% (95% CI 15, 36%) after 5 years and that symptoms do not necessarily remain well controlled during glucocorticoid treatment. "

pmc.ncbi.nlm.nih.gov/articl...

These are just a taste of the dawning realisation on the part of rheumies that PMR ISN'T a simple, benign, short-lived illness. A new movement has started to classify it as part of a spectrum of disease including GCA and large vessel vasculitis - it is being put on the map and the details of the map are being redrawn/

Being at 5.5mg in 3 years? I think it is perfectly reasonable and you should be encouraged to continue SLOWLY tapering 1/2mg at a time PROVIDED your body and your PMR allow it. You can't take a sledgehammer to PMR, it will always win, and if you try to, you will end up taking more pred than if you go about it gently.

pmrdec112014 profile image
pmrdec112014 in reply toPMRpro

Long PMR sounds like a fabulous term and I feel is really helpful in coming to terms with the fact it has gone on for so long and may do so for some time to come!And thank you for all the links you provide to research articles/ papers which I read with interest. I likely would never find them myself but do really appreciate the information they provide.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toCromboy

. I keep reading that pmr should last up to 2 years....

the problem is sometimes so do too many doctors! Plus agree with PMRpro being at 5.5mg at 3 years in quite usual, in fact good going from what we read on here on a daily basis..

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