Prednisone for Hughes

[Leenalina]

Has anyone used Prednisone for Hughes? From H. Foundation pages I found that it helps "extreme fatigue". Have you experiences of that?

[MaryF Administrator]

Hi there, I have not, but we do have members using this, but like any of the drugs often used in the Hughes Syndrome equation you will need regular check ups regarding any medications. I am sure others on here will come on and give you more detail than myself. Mary F x

[Hidden]

Hello, yes I was prescribed prednisolone when the fatigue and arthralgia made it impossible to continue working. I would say that you feel brilliant at first - I was back at work within three days, but would not recommend that you stay on them for a long time as there are often long term side effects.

Most doctors will prescribe them in short, sharp bursts rather than long term (this is often the case with asthmatics when they can't shake off a chest infection), although some lupus patients will have to be on a low dose for life. They suppress the immune system so can sometimes cause kidney and/or liver problems years later or things like cataracts (I have them age 44 which was a bit of a shock).

As with most medication, it's a swings and roundabouts situation - if you're feeling so ill that your quality of life is severely affected, it's worth taking them but try not to take them for too long if you can avoid it.

[bevers1]

I get them when a chest infection won't budge.

They slightly improve breathing but nothing else.

Always 40mg for 5 days then nothing afterwards.

[sander]

I am using lots of prednison, ( 4 years min 15 mg max 1000 mg) mostly to fight my Lupus.It is a wonderfull medicine but it has nasty side effects. among them osteoporosis..Everytime I try stop SLE flares up and ~.I am Still tired !.

[rlupus]

Hi I am on them the lowest dose i take is 40mg but from october to march i go up to anything from 80mg to 120mg daily for my asthma and lupus i get very bad attacks and chest infections, they do work but bad side affects.

[Zaney3622]

I have been on prednisone since 2006. It has done wonders. I began on 8g daily now 5mg daily. My disease attacked my lungs so I was on oxygen. Now 7 years later oxygen only when I sleep. Good luck

[Leigha]

Hello,

I take cortisone for adrenal insufficiency, 20 mg. daily. That would convert to 5 mg. of prednisone daily. They are the same drug. Without it, I just wouldn't move. Like a car without any pistons. So, does it help with my Hughes? I can't say, except that knowing Hughes affects fatigue and energy, it may. Don't know if this helps at all, but there it is!

Best,

Leigha

[Leenalina]

I use 10 mg a day for fatigue. It helped for four days. I cleaned the house and had so much energy. After that the fatigue came back with fever. Now it is little bit better and fever went after two days.

[tim47]

I was put on it in the 1970s when nobody had a clue about what we now know as Hughes Syndrome. I went from being very skinny, especially so after six weeks in hospital, to sixteen or more stone. I have absolutely no doubt it was a life saver at the time but do feel that I am paying a price now with joint pain etc. Prof Hughes used to start his lectures with a picture of a patient on prednisolone, very puffed face as I had. I cannot remember how long I was on it- but I was glad to get off it. I too have had a short course with antibiotics for a chest infection that won't budge. If you need it you need it, but I think it is something to be careful with to keep the dose as low as possible and for the shortest time. I always say it was better than the alternative. I seem to remember I had to change to the type that didn't upset my stomach- enteric coated?