Reducing Pred: My GP has me reducing my dose from... - PMRGCAuk

PMRGCAuk
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Reducing Pred

PMRNewcomer
PMRNewcomer

My GP has me reducing my dose from 15mgs down to 2.5mgs over a six week period and now I have pain in my back around the area of my kidneys. Can this pain be related to the reduction please?

22 Replies
oldestnewest

that is too too fast. Soon one of the very knowledgable knowledgeable ? (so much for my knowledge) people will pop on here and tell you lots of good information. In the meantime look over at the pinned posts under TAPERING PLANS and you will see that you have tapered too quickly. I just reached 2mg. from 15... and it's been 2 and 1/2 years...and I am pretty much one of the quick moving ones.... although I am having a flare... but I'l write that in a nother post. But best of luck to you. It is frustrating as hell at first. Realizing all this entails. But soon you sort of go with the flow and life gets better. It is NOT the worst disease in the world although at times it might feel like it. Look up the Spoon Theory too! there is a search box at the top right. Good wishes! oh and if you look at my profile you can find a Relaxation track that has hopefully helped some. Or contact me and I will send you. Breathe!

Did you mean 12.5mg not 2.5mg? That would be reasonable over 6 weeks, to go to 2.5mg in six weeks would be a bit of a disaster in my opinion. How long had you been on 15mg?

No I did mean 2.5 msg x

OMG I could not believe that you were being asked to reduce so quickly.

PMRpro
PMRproModerator

Why is he reducing it? Has he decided it isn't PMR after all? You have told us nothing about what has happened over the last 3 months - but on the basis of what we do know, it shouldn't pose a problem reducing from 15 to 2.5mg in 6 weeks after such a short time.

What dose have you reached before this pain started? That it is kidney level I get - is it muscular or internal?

PMRNewcomer
PMRNewcomer
in reply to PMRpro

It’s an internal pain. I am current on 5mgs to reduce next Wednesday to 2.5mgs. Three months ago I was diagnosed with PMR and started on 15mgs. GP wants me off Pred ASAP because of this corona virus. She also put me on Alendronic Acid but I’ve already had to have two teeth extracted so she has told me to stop those tablets as well.

PMRpro
PMRproModerator
in reply to PMRNewcomer

Your GP is crackers - allowing a flare of PMR would be just as bad if you were to get Covid-19. Self-isolation is the safe way of avoiding Covid, not reducing the dose of pred. The pred won't make a major difference to whether you catch it or not - young healthy people catch it too. I hope she isn't doing the same with other patients - rheumatologists are saying to continue with medication as required to prevent flares of the underlying disease.

I admit being above 10mg has been identified as a risk factor for hospitalisation with Covid (I posted about it earlier today) so getting below 10mg is sensible if you can but to insist you get off altogether? No, glad she isn't my GP.

borednow
borednow
in reply to PMRpro

Beautifully put PMRpro.

PMRNewcomer
PMRNewcomer
in reply to PMRpro

Hi, thanks for reply. I got up this morning and was in agony with pain in my right hip, thigh and calf. Also some soreness across my shoulders. I have taken 10 mgs of Pred so I’ll see if symptoms ease in a few hours. I’ll speak to my GP on Tuesday. Have I done the right thing?

PMRpro
PMRproModerator
in reply to PMRNewcomer

To expand on Snazzy's comment: unmanaged/untreated PMR is far more likely to progress to become GCA than PMR which is being treated with enough pred. Not only would that necessitate a far higher dose of pred that will definitely put you in the shielding group, you are exposed to the risk of irreversible loss of vision without that pred. So lose-lose however you look at it. That risk will be reduced if you are on the right dose of pred for YOUR PMR. Your GP may, of course, be blissfully unaware of this so I would bring it to her attention.

Hildalew
Hildalew
in reply to PMRpro

My reading of the article you gave a link to, PMRpro, despite its title does NOT tell me that the pred creates the risk.

PMRpro
PMRproModerator
in reply to Hildalew

No-one said it was causative. It is one of the many factors associated with an increased risk of hospitalisation in a Covid-19 infection. In view of the lack of knowledge about Covid-19, for the present it does seem reasonable to be aware of all possible risk factors and be aware of them. If there were a cure, effective treatment or vaccine it would be another matter. But there aren't ...

SnazzyD
SnazzyD
in reply to PMRNewcomer

I’m not sure I’d want to meet Covid with unchecked vasculitis.

PMRpro
PMRproModerator
in reply to SnazzyD

Me neither!

Hidden
HiddenModerator
in reply to SnazzyD

😱

I agree to not take the Alendreic Acid..but for other reasons. DO you have bone loss? Have you had a DEXA scan? what her original diagnosis PMR. I went from 15 mg to 2mg in 2 1/2 YEARS. not 6 weeks!! No wonder you are confused and in pain. Call another doctor. Are you in the UK or the US? and again read the side PINNED posts about PMR.

Uk

Can you get a face to face appointment with your GP? I think a serious discussion may be necessary - it would seem to me that she doesn't know what she's talking about and maybe is a little arrogant? Sometimes (and I really hesitate to suggest this as it really shouldn't be necessary) bursting into tears will help your cause!! It often makes a dominant person feel in charge and more likely to agree with your request. I hope she listens to you as we all have quite enough to deal with, without GP's insisting on unreasonable treatment. Good luck

No she’s not arrogant, just very, very young. She looks about 14 😊

Hidden
HiddenModerator
in reply to PMRNewcomer

🤣😂🤣 thanks I needed a laugh. I had student drs come to the house as part of heir first year placement training. They looked so young and were surviving on pot noodles!

PMRpro
PMRproModerator
in reply to PMRNewcomer

Hehe - my rheumy looks about 15, even my GP agrees! And he is a top name in the world PMRGCA field!

No way you can reduce that fast ! 1mg/6weeks is sane. Your doctor has no idea what he is dealing with if you have PMR

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