It’s like being on a merry go round: I was tapering... - PMRGCAuk

PMRGCAuk

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It’s like being on a merry go round

Doraflora profile image
18 Replies

I was tapering nicely down to 3.5 mg Pred when I started to get pain in my shoulders. Guessing it was good old PMR (I’d only suffered with it in my thighs before) I thought I’d whack the Pred up to 10 mg & see how things went.

The discomfort eased slightly but then my fingers swelled considerably & so I spoke to my GP who suggested reducing down again as it was probably fluid retention. I went onto 5mg the next day and the swelling subsided, although my two middle fingers remain swollen.

Suffice to say the pain in my shoulders has worsened a bit but I’m loathe to whack up the Pred again in case it stimulates extra fluid retention.

I guess I’ll have to put up and shut up for a while and speak to the GP again, who had mentioned water tablets at some point. Maybe I’ll have to go on them and see. Swings and flipping roundabouts this game.....

But how can I possibly moan when there’s so many of you on here suffering greatly - and more importantly not to mention the poor folk in the Ukraine.

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Doraflora profile image
Doraflora
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18 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

How about a compromise and try 7mg or 7.5mg…nearer the usual recommendation for flares of adding 5mg. Might be enough to help shoulders without affecting fingers too much..

Doraflora profile image
Doraflora in reply toDorsetLady

I guess it’s worth a try, Dorset lady, but I guess I’m wary of confusing my system any more at the mo.

SnazzyD profile image
SnazzyD

Hello, why is it being whacked up to 10mg and not somewhere in between or your last comfortable dose where you might not blow up quite so much?Just a thought, how much salt do you consume? I don’t mean just added but already in food as well.

Doraflora profile image
Doraflora in reply toSnazzyD

Hi SnazzyD. I think I read a suggestion (maybe on this forum) of maybe going up to 10 mg.

Re the salt: I never put salt on my food, nor use it in cooking, and I’ve always been a stickler at reading labels. I’ve got blood tests on Thursday so I might wait until the results before I try DL’s suggestion of going up to 7.5mg to ease my shoulder pain.

I’ll also have a chat with my GP re water tablets maybe.

Louisa1840 profile image
Louisa1840

I'm having trouble reducing to three and a half from four mgs pred too. A doctor told me that it's really tough below five so maybe we just have to be extra patient and know that it will happen in time? I flared at three and a half and went back up to eight and then came down to four again without any trouble. This seems to be my sweet spot for now.

Doraflora profile image
Doraflora in reply toLouisa1840

Did you slowly taper from 8mg, Louise1840, or did you do what I did & drop immediately from 10mg to 5?

Louisa1840 profile image
Louisa1840 in reply toDoraflora

I stayed at 8 mgs for a few days to mop up the inflammation. Then six for a couple of days . Then five for a couple. Now I'm back on four and holding......!

Doraflora profile image
Doraflora in reply toLouisa1840

Very best of luck, louisa1840. Steady Eddy is the name of the game🤣

Blackcatlover profile image
Blackcatlover in reply toLouisa1840

I too am stuck at 4mg of prednisone and flare every time I try to get below 4mg. I’m happy to stay there because it’s taken me 6 years to get that low. I just may have to stay there forever and I’m okay with that. Those four little pills every morning give me a quality of life I can live with.

PMRpro profile image
PMRproAmbassador in reply toBlackcatlover

Which is the whole point!

Louisa1840 profile image
Louisa1840 in reply toBlackcatlover

Yes. It's taken me 5 years to get here and, like you, will stay here if I have to. Quality of life is paramount......

Doraflora profile image
Doraflora in reply toLouisa1840

Absolutely!

Noosat profile image
Noosat

After 3 plus years I am down to 3mg. I got some shoulder pain, but that could be bad posture at kitchen counter and computer. I have put up with it and it gradually goes away in the morning when I stretch my body.I believe I someties have bad poeition on pillow when sleeping. I am just hoping it will disappesr without going up on pred. Also occasionally take Tylenol, I have come this far, I don't want to go up unless it becomes unbearable

Doraflora profile image
Doraflora in reply toNoosat

It’s the same with me, Noosat, the pain is worse when I’m in bed but tbh it doesn’t affect my arm movements to any great extent and I can still exercise using my arms ok. It might not even be a PMR effect, it could be arthritis or something, I can’t be sure. I’ve asked my GP if my blood tests on Thursday can include my inflammation markers.

Onwards & upwards!

PMRpro profile image
PMRproAmbassador in reply toDoraflora

Where is the pain when you are in bed?

Doraflora profile image
Doraflora in reply toPMRpro

In the top of my arms and across my shoulder blades

PMRpro profile image
PMRproAmbassador in reply toDoraflora

Not your pillow?

Doraflora profile image
Doraflora

I don’t really think so, PMR pro, it’s not “that” kind of pain.

Tbh that issue is the Least of my worries at the moment. I’ve posted on here before about the severe itching I’m getting.

I’m having blood tests done tomorrow but now I’m starting to wonder if it’s a late reaction to the Pred? It really is getting me down - a lot - and I’ve asked for a dermatologist referral a few times now. If I didn’t have the itching I would be so much happier in myself. It’s limiting what I wear, I’ve tried countless lotions & potions, I don’t know what to do...

I am going to flag the Pred query up with my GP though but I know there’s not many alternatives

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