It’s like being on a merry go round

[Doraflora]

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.

[DorsetLady PMRGCAuk 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 in reply to DorsetLady]

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]

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 in reply to SnazzyD]

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]

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 in reply to Louisa1840]

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

[Louisa1840 in reply to Doraflora]

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 in reply to Louisa1840]

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

[Blackcatlover in reply to Louisa1840]

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 Ambassador in reply to Blackcatlover]

Which is the whole point!

[Louisa1840 in reply to Blackcatlover]

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 in reply to Louisa1840]

Absolutely!

[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 in reply to Noosat]

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 Ambassador in reply to Doraflora]

Where is the pain when you are in bed?

[Doraflora in reply to PMRpro]

In the top of my arms and across my shoulder blades

[PMRpro Ambassador in reply to Doraflora]

Not your pillow?

[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