IM I DOING THIS RIGHT.🤔

[rachelbell]

Iam now down to 3. 5mg of prednisone. I have aches around my hips and across my lower body . I have been doing more than usual but it's still there on a lazy day . Wondering if I'm doing right thing by working through it and sticking to 3.5 mg

Haven't seen my doc for awhile and Wondering if I should go back for blood tests?

I also have a cyst on my pancreas which I had a scan for about 6 months ago and was told no increase in size but this is causing me concern.

I feel at a crossroads with it all .

I'm reading on the forum about tests you seem to have when your lower on prednisone but I haven't got a clue where to go next . Any advice would be grateful.

Thanks in advance 🙁

[PMRpro Ambassador]

To me you sound as if you have overshot the dose you need at present - the lowest effective dose, the lowest dose that gives the same symptom relief as the starting dose did. Are the current aches stable or increasing? Were they there before you started doing more than usual?

[rachelbell in reply to PMRpro]

Yes they were there when I started doing more. Thanks for quick reply

[PMRpro Ambassador in reply to rachelbell]

When did you last not have them? At what dose?

[rachelbell in reply to PMRpro]

Two months ago on 5mg then

[PMRpro Ambassador in reply to rachelbell]

Then it is likely that is the dose you need. You have gone too low for there to be enough to manage each daily batch of inflammatory substances. It may be 4.5mg is enough. But 3.5mg definitely isn't.

[rachelbell in reply to PMRpro]

Thank you

[DorsetLady PMRGCAuk volunteer]

Hi,

You’ve may well have reached the level that’s not controlling your PMR at the moment.

Whether that‘s just the way it is, or whether you worrying about the cyst [which is very understandable] and causing a flare or adrenals struggling. Probably a combination of all three.

Hips could be PMR flaring , but what do mean ‘lower body’ - torso or legs?

I’m guessing you mean a cortisol to test if adrenals are capable of working. Do you have any symptoms of adrenal insufficiency -

healthunlocked.com/pmrgcauk...

I’d be inclined to maybe treat as a flare - as described her -and drop back to 4mg-

healthunlocked.com/pmrgcauk...

[rachelbell in reply to DorsetLady]

I have moments of over whelming fatigue but this has got less as time has gone on. It's my lower torso that seems to be aching . My sugar levels seem to be not to bad when measuring my diabetes levels. So seems its going to 4mg

[DorsetLady PMRGCAuk volunteer in reply to rachelbell]

Good that fatigue is lessening -that’s shows hope on the adrenals front.

Lower torso -if it’s back -sciatica or arthritis in hips maybe ., or is it front as well?

[rachelbell in reply to DorsetLady]

Mainly back but circulating around if that makes sense !

[DorsetLady PMRGCAuk volunteer in reply to rachelbell]

Would go for sciatica or maybe sacroiliac joint issues... but maybe have a look at these exercises for back pain - albeit they are from BHF website.

bhf.org.uk/informationsuppo...

Try some of the gentler ones initially.. as suggested.. and maybe try and get a physio appointment. not sure how easy that is in your area...

But as already suggested think you may be too low on Pred.. so address that first maybe!

[rachelbell in reply to DorsetLady]

Thank you I will

[piglette]

I agree with the others. It seems you may have just gone that little bit too far.

[Louisa1840]

Hi Rachelbell, we are very similar in that I am on 4 .5 pred. I am still stiff and a bit achey but really not too bad. What interested me was the cyst on your pancreas as I too was diagnosed with one of those. I had an MRI after a year and was told there was no increase in size. The specialist also said "Even if it had increased, there is nothing we could do as it would be too difficult to operate on". As I hadn't enjoyed the expereince one bit, I cancelled the following year's appointment and reseolved to live with it! If there is nothing they would do then what's the point of monitoring it? All the best in your quest for good health.........

[perceptual63 in reply to Louisa1840]

Monitoring your cyst every 1-2 years is the standard protocol here in the US as long as there aren't any significant changes within that timeframe. And if there is, they would shorten the duration between surveillance and incorporate different diagnostic tests to get a closer look. And then there's also surgery (if necessary) to drain the cyst or to completely remove the cyst along with part of the pancreas.

There are things that can be done.

[rachelbell in reply to Louisa1840]

I was told how important it was to keep an eye on the size as it can become cancerous at certain size which then would be removed ASAP

[rachelbell in reply to Louisa1840]

Thank you for your comment just replied to perceptual about what I was told about my pancreas so I do worry

[AmberAliona]

pain around hips you need to increase your Pred.