Hi, thank you & yes have experienced the awful joint pain. Unfortunately in South Africa we do not have 1mg prednisone so I am going to try 5mg one day then 2,5mg next day & see if thats ok. Tired of the doctors now....going to do this on my own & see if every alternative day works. Thanks!
will I have problems If i stop steroids eye drop cold turkey?
Used for 5 days 4 times a day.
Thanks zss,
Use regain for thinning hair. I have been on oral steroids for over 21 years now and was loosing hair after 2 years, been on it for over 15 years years now and my hair is thicker that ever. It’s a bit grey now but I guess that because I’m 49.
Yes so true, had them all when trying to come off too fast. After 21years of non stop various corticosteroids I am down to 0.5mg of dexamethasone but sorta stuck at this level with a dry red face and itchy skin. Never the less I am grateful and happy to be here.
I am also a new member. I was on 10 mg of prednisone for over 10 years for arthritis. I am 53 years old , and postpost-menopausal . After weaning off of prednisone slowly I didn’t experience any withdrawal symptoms for about a week. Then they came, the same symptoms that most of you have with one twist. I have now been free from prednisone for about three months and am now experiencing severe itching that usually starts on the tops of my feet and moves on from there until my remedies of topical anti itch creams, warm epsom baths, and benadryl finally relieves it for the night. Not only that, I cannot stop sneezing and the smallest irritants are magnified to the point that I now have 2 air purifiers running 24/7. The normal lack of fluid retention and weight loss has started to help, but I feel like the itching may be related to the rapid fluid retention loss. ( I have had severe pedal edema on and off for years while on prednisone and since withdrawal began it has been constant). I was wondering if anyone else has had these itching and sneezing symptoms as a result of prednisone withdrawal. It seems to me that this makes sense, (the whole cortisol level thing). Thanks for any responses.
As I understand, prednisone (pred) reduces the symptoms of many ailments including itching. So when you were taking pred, without knowing you had itching symptoms, the pred dealt with them.
Now you’re off pred, so the itching reveals itself.
The two questions before you are:
- Other than returning to very low doses of pred, what else can you take to deal with the itching?
- If a doctor says there is no problem is you taking very low doses of pored, I would ask to take hydrocortisone instead. I took book over a few years and found hydrocortisone to have less side effects and in my experience, when I weaned off it, I had NO itching.
Best wishes to you!
Pred will manage allergy symptoms amongst other things - nothing to do with cortisol, it just damps down the immune system in general.
You were lucky with HC - I know several PMR patients who required HC to encourage adrenal function to return to normal but asked to go back to pred which had caused them no problems at all while they found HC unpleasant.
Everyone is different - I had terrible adverse effects with methyl prednisolone but nothing at all with prednisolone or prednisone.
I also tried to ween off so many times but failed. Low blood pressure and body aches. I also got the itching and the sneezing. After a lot of digging. These symptoms show when cortisol levels are too low. I have moved to hydro cortisone (hc) 20mg at 8am and 20mg at 2pm. So now during the night my body has little cortisol. After 2months I dropped to 10mg at 2pm. Under stressful times I sneeze. That seems to be the first noticeable indicator. I will top up with 10mg of hc. I am hoping to drop the afternoon dose in 2months. I doubt I will ever get off the steroids but I don’t mind continuing to try different ways.
Interesting that you had problems with prednisolone and not prednisone. The former as I recall is metabolised by the kidneys whereas the latter by the liver.
Given both have similar therapeutic effect, by all means keep away from prednisolone, but inquire if there are options to deal with the itching other than ,low doses of prednisone.
You should be on prednisone for as long as you need, but no more.
As your goal is to drop steroids one day, may I suggest that instead of taking 10mg in one hit at 2pm, take it in 2x5mg say at 2pm and 4pm. After a while you’ll see that 5mg is enough (hopefully) and that will help you en route to completely weaning off it. Good luck.
thanks for the advise. i have been completely off of steroids since mid-August, but am still fighting these awful and painful withdrawal symptoms. I weaned off slowly over about 8 weeks, but I took it for so long that now .I know that I should have had a better rheumatologist and had it not been for the outstanding care that I have from my current pain management dr., I would still be taking it. some advise for others is to not take any prednisone for an extended time for arthritic pain until you have tried everything. I could be living with these symptoms for up to a year. Yippee!!!
No - both prednisone and prednisolone were fine, it was METHYLprednisolone/Medrol that wasn’t. The methylation of the pred is supposed to increase the antiinflammatory effect - for me all it did was increase the adverse effects and not the desired antiinflammatory effect!
The difference between prednisone and prednisolone is that prednisolone is the active form and is ready to go as soon as it is in the bloodstream. Prednisone must be processed by the liver to turn it into prednisolone. The role of the kidneys is to excrete it.
I don’t have any itching - at least, not due to pred. If I itch it is because I ate wheat!! I’ve been on pred for over 10 years and there is little sign of getting off it soon. I don;t mind - it gave me my life back.
On the other hand, pred for PMR gave me my life back and if that is what I need that is what I need. I’ve had PMR for 15+ years - about 5% have it for a very long time. Having had 5 years of PMR with no pred and no respite during that time - I’ll accept pred and any downsides rather than return to that.
And a really slow taper, dropping as little as 1/2mg at a time after 10mg is far more likely to succeed than halving the dose overnight,
I am still taking the morning dose of 20mg. As well as the afternoon dose of 10mg. I just will drop the afternoon dose for now and see how it goes.
Your point on pred is right. One must not take it for longer than is needed.
You could also see if taking 10mg when waking up and another 10 mg at lunchtime (instead of 20mg in one go) may help you feel better during the day. It did for me.
Have you been tested for allergies including but not limited to gluten?
No - it was quite clear it was wheat, if I don’t eat it I don’t itch! Nor is it gluten - I can eat other grains containing gluten. And I itched if I ate Juvela products made with their flour derived from washed wheat starch. The local coeliac specialist was convinced it was wheat starch causing the problem too.
That makes sense.
You could do worse than see an immunologist to test you with the constituents of most wheat products (granted highly processed products have many ingredients).
That way you’ll get or should get a comprehensive picture of what specifically triggers your itching.