When you stop Pred do the side effects go away?

[Loco99]

I was wondering if once I (hopefully) get off Pred completely, some of the more irritating side effects go away? I’m grateful for the fact Pred keeps me mobile but I could do without some of the side effects such as the moon face, buffalo hump, paper skin and fuzzy face. So has anyone here got to zero and got rid of these irritants?

[Sandy1947]

My Derm said thin skin does not improve once your off Pred. I’m down to 3mg and still have Pred head (it may just be the aging process) and short attention span. At this point symptoms may just have made what was already there a bit worse.

[SnazzyD in reply to Sandy1947]

Oh, my skin is so much better since about 4mg, so I’m not sure that’s the case for everyone. Hope yet!

[Sandy1947 in reply to SnazzyD]

Good to knowL

[Sandy1947 in reply to Sandy1947]

Know!

[PMRpro Ambassador in reply to Sandy1947]

You know you can edit? Click on the More arrow...

[SheffieldJane]

I think side effects lessen before zero, but I for one will have weight to lose and flexibility to regain. Do slather the moisturiser on for your delicate skin and try to have a little walk everyday. I am grateful that the disease I got actually does go into remission and I won’t , with luck, have an on-going disability.

[GerriMc]

I think my hump is going down. Having real trouble losing the weight though! I’m at 4.5mgs now. Still stiff but no pain.

[Hidden]

Hi Loco

I had a ‘Full Moon Face’ which gradually reduced almost without me noticing after l got down to 10mg & by the time l was on 5mg my face was pretty much back to normal!

It puffed up again as l had to return to 10mg but nothing like it was before.

The hump on my back also gradually reduced & l really don’t notice that.

My skin never became particularly thin but a good body cream will help, l think a lot use Double Base, l’ve pretty much stuck to Garnier for Extra Dry Skin.

The fuzzy face, peach fluff, l tackled with my epilady as l went along.

Hope that helps, what dose of Pred are you on now?

Best Wishes

MrsN 🌺

[DorsetLady PMRGCAuk volunteer]

Hi.

Most should improve as you get lower anyway - and disappear after you cease Pred.

I’ve been off Pred for 2 years, and although my thin skin is much, much better it does still bruise quite easily. But I would put that to aging as much as anything else. Having said that my knee following replacement operation has healed beautifully!

[PMRpro Ambassador]

They can go away while still on pred if you are proactive. Low carb eating removed my moonface, most of the hump and 35lbs in pred/PMR associated weight - no sign of any of them unless you know I am on pred, it isn't obvious. Fuzzy face I deal with with my epilator but it only happens at 15mg, by 10mg it is well gone. I don't have the thin skin problem - and I believe that is a great deal to do with NEVER using soap or other foaming cleaning products. I wash my hair every 3 weeks or so and that is the only soap that gets near me except my hands.

Some people say the skin doesn't recover - others find it does. But the right care helps.

[SnazzyD]

They reduce before zero. I found Gorilla face started to go below 10mg and was a peach fuzz roughly around 5-6mg. Hump went below 10mg but I had no weight gain due to low carb diet, so that may have helped. Moon face almost gone by 4mgish. Owl rings round eyes reduced hugely below 5mg and just appear when v tired. On 4/3.5mg Fat round middle still happy to stay there, sensitivity to salt and fluid retention still there. The where-was-I? brain still here. Muscle coming back but need to work on flexibility, though it is so easy to over do muscle use still.

[Longtimer in reply to SnazzyD]

Gish when you think about all the side affects.....many not mentioned here, I sometimes wonder how long the list would be!

It`s a blessing that not everyone gets all of them......although some days we feel as is we do.....

[Longtimer in reply to SnazzyD]

Meant to say gosh,...not gish!....pred head side affect!

[SnazzyD in reply to Longtimer]

Naturally

[Loco99]

To answer MrsN I’m on 5mg and hoping to taper down soon, have had a very traumatic year so far and as soon as I think about reducing something else happens. The latest thing has been a fall on the stairs which resulted in a broken shoulder and a large cut on my shin which is taking ages to heal. Pred has been mentioned as a culprit as regards the slow healing.

[musicality in reply to Loco99]

Yes same here. Just as I'm getting down to very low dose of Pred, other ailments kick in and I feel sure most, if not all, are caused by long term Pred. Put on diuretics and blood thinners for heart probs., but they have their own side effects (like most drugs!), so one problem may be cured, but other problems spring up from the drugs that are supposed to be helping you and impair your quality of life. Too much calcium floating around in blood and settling in soft tissues (heart and other organs) instead of going to bones and teeth. Parathyroid glands problem, heart problems, skin, hair, etc., etc., the list adds up the longer one is on Pred. I envy the lucky ones who are able to reduce and stop Pred within a few years, or are lucky enough to be offered one of the new biological drugs to see if they help reduce/stop steroids.

[PMRpro Ambassador in reply to musicality]

I wasn't offered Actemra to get off pred until I had had PMR for 18+ years and been on pred at above 10mg for most of 14 years and latterly nearly 20mg. However - I have no other medical problems that can be laid at the door of pred. The atrial fibrillation was due to PMR and present long before pred. Not everyone develops problems with pred - I'm not saying this to make you feel worse but for the benefit of anyone who is scared off pred by your experience.