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PMRGCAuk
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PMR

I am new to here and had PMR diagnosed 18months ago with my husband then diagnosed 6 weeks after me.

He is managing on 8 mgs a day. I got down to 3mg - everything was going ok and then this morning I am back to square one. This is the second time I have got close to being able to wean myself off and Wham its back again. I woke during the night - was in so much pain it felt like all my muscles/joints were in spasm and I couldnt relax. The pain was so bad the tears came as I could even turn over in bed. To get out of bed and to sit on the loo unbelievable the backs of my legs are so painful. Just when you have a day of wanting to do so much - I cant even bend down to pick something up from the floor.

Will it ever go away - its so debilitating.

A fellow PMR sufferer.

Paula

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Hi

I was diagnosed two years ago managed to get down to 8 then flare and back to 15 in June this year now on my way from 11 to 10.5 .

In all reality it takes much longer then GPs say anything from 2 years plus

It will go but are you doing to much ? We have to do our bit as well must be difficult with both of you having PMR theirs many things I have to ask others to do for me now .

Others will be along later to give more advice

Well come to the site its the only thing that keeps me sane some days

Rose

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Hi Paula,

Would say you're trying to reduce too quickly. I know we are all different but if your husband is okay at 8mg and you're not at 3mg and you are virtually at the same timeframe (6 weeks is neither here nor there) then surely that should tell you something.

If this is the second time it's happened then - sorry to be blunt - but you haven't learnt anything about living with your illness.

The idea is NOT to get to zero in the fastest time possible, it's to find the LOWEST dose that you need. Not want your doctor thinks, not what your husband might need, but what YOU need.

It's not a race, so long as you have the PMR, and that maybe 2 years (very unlikely), 4 years (more likely) or forever (unusual but certainly possible) you need the correct level of Pred.

It can debilitating pre diagnosis and if you let it be - with the correct level of Pred it's not! Plus you need to learn to pace yourself.

Will it go away - very likely, but in the meantime you have to learn to control it, not the other way around.

Go back to a dose you were comfortable at, get the inflammation back under control, and then reduce SLOWLY.

Read the following

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

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You haven't "got close to weaning off pred" - you have overshot what you were looking for: the lowest dose that manages the symptoms as well as the starting dose did. If it has happened at the same place-ish both times then the dose you are looking for is probably around 5mg. You have been going too fast at this stage instead of settling at the new dose for at least a month and preferably longer at these low doses to be sure it is still enough.

This isn't a race and PMR lasts on average up to 4 to 6 years for about 75% of patients. About a quarter of those are off pred in 2 years - but are at a higher risk of relapse at a later stage. Some of us take even longer.

Dorset Lady has given you good advice - read it and then try to take the attitude it sounds as if your husband has taken. You are on the pred to allow you decent quality of life in the meantime until the underlying cause of the symptoms we call PMR, an autoimmune disorder that causes your immune system to attack your body in error, thinking it is "foreign", has burned out and gone into remission.

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Hi Paula, im sory you are having such a struggle .. one of the most difficult lessons many of us have to learn, is patience, .....and acceptance that PMR will not be rushed, nor will it go away until it is ready.

I call PMR my house dragon, and have named her Patsy.

Patsy wrecks havoc when I dont provide her with enough prednisone,... when I try to take away pred when she isnt ready to give it up,... and when i try to push her to do more physical activity than she wants to do. When Patsy is happy, I am happy...

so far as I can see, noone else's house dragon is exactly like Patsy, so I dont try to use their experiences to make my decisions. I do, however, take their wisdom into consideration when trying to work on house-breaking issues with Patsy.

So, good luck with your house dragon, don't compare yours to your husbands! They are not remotely the same, and will not behave alike. I know...bummer huh...!!

Kind regards this newly autumn day, Jerri

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Love that!

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Hi Paula

I do know how you are feeling. I am also new to the site and diagnosed just over 3 months ago. I started on 15 mg and reduced within a month to 10. Following a rheumatology referral I am now reducing monthly, currently on 9 mg. I would love to be off steroids but learning that it will take some time and patience. I now tend to go with how I feel. If I have any aches or stiffness then I don't reduce at that time. Hoping to get to 8 mg in the next couple of weeks but keeping an open mind.

I am normally a very active person & have carried on doing most things and then had to suffer the consequences. Learning that you have to pace yourself and rest when you can. This will enable you to get an even balance in both mind and body. It is hard psychologically and physically but slow down and keep an open mind for the best outcome.

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Hi,

I've been on Prednisone since 2010 after having been diagnosed with PMR. Tried reducing many times but would flare and back up, my NPR told me that PMR only last six months, she should read many of these stories.

I have managed to get down now to 1mg, feeling a little tired but otherwise ok and I will continue until I can get down to 0. I am really sick of it, the weight gain and everything else that goes with the medication but it is a lifesaver when needed.

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Your NPR needs to be sent for retraining! Nowhere - and I mean NOWHERE - is a duration of 6 months ever mentioned in connection with PMR. That is total ignorance.

Have you ever tried low carb for the weight gain problem? Has worked well for many on the forums.

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