Changes at 6.5

[papadapadoo]

Tiptoeing my way down from 7mg (started in Dec. 2022 at 20) to 6.5, I noticed that I no longer bruise so easily (yay!) and my allergic contact dermatitis has returned (boo). But more significantly, I feel fatigued much of the day (I've been very active) and a bit depressed (I'm usually optimistic) until my low-dose naltrexone sends an endorphin rush in the afternoon. Having read the entries on adrenals, I'm thinking something along those lines is happening. I would appreciate thoughts about what may happen over the next few months, and whether it is wise to continue to taper by .25mg (DSNS) or hang on here for a while. The PMR was unhappy when I eariler tried to get from 6.5 to 6. Let's all hope for an improved 2024.

[piglette]

The deathly fatigue has got you!! Ideally stay on your current dose. I must admit I did go up from 5mg to 6mg, as I was like a zombie. I then went back to 5mg and stayed at that dose for several months. You may not be as zonked out as I was!

[PMRpro Ambassador]

The lower you can get on the pred dose, the greater the signal to the adrenal set-up to produce more cortisol to replace the lack of corticosteroid. Over time it should improve but it is unlikely to be sudden or comprehensive immediately - you have to be patient and possibly adjust your lifestyle a bit to cope with the fatigue. SnazzyD has often written about the adjustments she had to make over an axtended period.

[DorsetLady PMRGCAuk volunteer]

Maybe keep the small steps, but leaving a bit longer between each taper.

Took me about 8 months to reduce from 6mg to 3mg - by which time adrenals were chugging along okay…but I think I got away quite lightly - only had random bouts of fatigue.

[Bcol]

Lifestyle ("I've been very active") and speed of reduction is important at this stage. The lower you get, probably, the longer you need to take. I go on 0.5mg ever five weeks or so using a DL taper. Like DL that would have taken me around eight months as well. Even then, I won't drop lower if it doesn't feel right. I was lucky and didn't really suffer from the fatigue at this stage.

[Gimme]

I'm trying to get to 4 mg and am finding the fatigue quite random and not necessarily related to what I did the day before. I'm having good days and bad days. I was stuck on 5 mg for months during the summer and felt terrible then. I gauge how well I am doing by what I feel reluctant to do. I look forward to a swim, so I can't be too bad, but I put off anything round the house that requires any bending, so that tells me not to overdo it. If I feel reluctant to do something I enjoy, then I know that I need to rest.

[Miacaro45]

Please tell about the dermatitis as I am going through very itchy parts of my body. My dermatologist has given me 4 kinds of creams and even an antihistamine. The creams were not great and the antihistamine put me to sleep while drying me out. Any suggestions would be welcomed. Thanks

[papadapadoo in reply to Miacaro45]

It took a long time to get a diagnosis of my allergic contact dermatitis. Finally a patch test revealed that I was allergic to formaldehyde...which is everywhere. I was prescribed clobetasol, which is horrendously expensive in the US but I got cheaply in the Azores, and it helps some. But prednisone, at least at doses above 7, shut it down completely. If I were you, I would request a patch test from your dermatologist.

[Miacaro45 in reply to papadapadoo]

Thank you for this information

[papadapadoo]

Thanks, everyone. Since I am about to go to St Kitts for two weeks I will stay with my present dose, where I am pretty comfortable. I should be able to sleep on the plane!

[DorsetLady PMRGCAuk volunteer in reply to papadapadoo]

good... just make sure you have extra Pred just in case required... but most of all enjoy...