Side effects: I'm new to this website having been... - PMRGCAuk

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Side effects

granofthewest profile image
13 Replies

I'm new to this website having been diagnosed with PMR in December. Am concerned about possible side effects of taking Prednisalone, on tapering dose now on 13g a day. Also concerned about possible flare ups as feeling so much better at present.

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granofthewest profile image
granofthewest
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13 Replies

Read my post I was on steroids 12 years so you will be fine. Think mine is flaring up again so may be back on them. Can thin the skin over the years but couldn't have functioned without them

PMRpro profile image
PMRproAmbassador

Hi and welcome!

Most of the claimed side effects ascribed to pred can be managed or even avoided when you know how. I have been at above 10mg of pred for the last 10+ years - no sign of cataracts which are the most likely thing to not be escaped - no signs of even pre-diabetes, managed BP, weight gained with PMR which rearranged with pred has been lost, bone density unchanged after over 7 years on pred with nothing more than calcium and vit D.

You have been started at a dose above what is expected to be required - now you will taper slowly to find the lowest dose that manages the symptoms. If they return - you stop reducing and go back to the dose that did manage them, wait a bit and try again - just because you are stopped at one point for a while it doesn't mean you won't get lower, just not yet.

But ask specific questions - some of us could write for an hour and still not tell you what you want to know.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi and welcome

This might give you a bit more info about your future - but there is always someone on here to answer any questions that arise.

healthunlocked.com/pmrgcauk...

Hello

Welcome to the Forum & glad you are feeling so much better 🌷🌷🌷

Please try not to worry about side effects & Flares, you may be lucky & may not flare at all; side effects although many do not affect everyone & take time to appear.

There’s lots of advice & tips on here to help so please ask any specific questions.

Kind Regards

MrsN

PMRCanada profile image
PMRCanada

I’ve been on pred 1.5 years and only experience a few side effects that are quite manageable (thinning hair, skin that bruises easily, and sweating in the early hours of the morning). I’ve dropped 30lbs and got off my high blood pressure medications.

Not everyone gets all the side effects. I wouldn’t worry about what MIGHT happen, rather deal with side effects when/if they occur.

As far as flaring goes, you will come to be able to listen your body. If your inflammatory markers are accurate, they can be helpful in avoiding flares. I get bloodwork monthly (and te results online), and meet with my GP every three months to review my PMR and any other health woes.

Griggser profile image
Griggser

I recently came across this which was interesting practicalpainmanagement.com...

PMRpro profile image
PMRproAmbassador in reply toGriggser

It is often quoted on the forum - Dr Matteson has also written for the charities here.

FinnishMember profile image
FinnishMember

Hi, My side effects from Prednisolon / Prednison were extreme high energy for more than 6 months. Now after 10 months I am very drowsy and would like to sleep more than 10 hrs a day.

The doc says I have to take Prednisolon for one more year.

I am glad that it helps!

Griggser profile image
Griggser

DadCue, thanks for your reply and with all these things there are never straight forward answers, never the less as I said it was interesting.

PMRpro profile image
PMRproAmbassador

I believe this study was done retrospectively on the basis of the insurance declarations - which of course does make it a bit biased - but it does remove the problem of recruitment and consent.

PMRpro profile image
PMRproAmbassador

They weren't "excluded" - the study was looking at PMR and lower dose pred.

HeronNS profile image
HeronNS

I think the conclusion of the study was to show that a member of a PMR cohort without other significant health issues was no more likely to experience "side effects" than a similar individual without PMR. In other words a lot of the things ascribed to pred would happen anyway with aging. My personal belief is that pred (not PMR) aged me faster. This is a serious enough side effect, but in the big picture it makes pred a more acceptable risk, especially given that my life wasn't worth living without it. I do agree with you that some things can be placed directly at pred's door. I had increased ocular pressure. This dropped steadily along with my pred dose and is now what my eye doctor calls "good". Other side effects I experienced, elevated blood sugar (I'm not diabetic) possibly bone thinning, thinner skin, can all be dealt with, in my case without additional medications, and pretty much disappear as pred is tapered.

PMRpro profile image
PMRproAmbassador in reply toHeronNS

I understood from at least one article about it (and the original) that the control population did not have a listed diagnosis of PMR as well as not having been on long term pred.

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