Reducing prednisolone - anyone else doing this?

[Grausse]

Was put on this in February for auto immune disease. 10mg, then alternating 10 /5mg and then 5mg.
My inflammation is now better as I'm on sulphasalazine and HCQ so I'm desperate to get off the steroids.
Rheum CNS told me to try alternating 5/0 and that was a disaster, immune system in overdrive within days and back up to 5mg for a few weeks.
I'm now on 4mg and doing ok but I've been told to wait a month before going down to 3mg.
Is that how it has to be?

My DM had to do this for autoimmune disease and yes, it has to be super slow to avoid things rebounding.

It also gives your body a chance to pick up making it's own steroids again so you don't get effects from stopping too soon.

The most tricky time is coming off them.

My DM was absolutely desperate to come off the dreadful things (which also sorted her autoimmune disease out brilliantly) but it took ages.

This isn't mine but I used it when tapering
You need to have a test to see if your body is producing it's own steroids otherwise you may need another tablet once you get to 3mg.

This is what I feared. The rheumatologist was so gung ho about giving me steroids, then covid and lockdown meant they couldn't change my DMARDS.
Now I'm stuck with it.
Not been told to have blood tests.
@pineapplepizzas what other tablet do you mean?

You don't need blood tests when tapering from those amounts
It's fairly common to be put on tapering dose to wean you , you obviously had a reaction to this so they are taking it slow. It's frustrating but the right thing to do.
I was on 20mgs for 18mths whilst I had my last son (had to come off the DMARDs) and I tapered to nothing over 6wks as I went back on DMARD and biologic but I tolerated it well. I have RA, and have had several course of steroids to get me over various bumps in the road over the past 20ys.

I'm tapering at the moment, but not from
Prednisolone, but a different steroid. I saw a consultant twice in the last fortnight.

I can never get off steroids once I start, every time it takes me years. I have to follow the principle given by pineapplepizza.

The 'other tablet' - Pinneapplepizza means a lower dose of the same medication OP

I was on Prednisone for about 8 years, only 5mg twice a day. It took me about a year to come off them and then another year to loose the side effects. Still have frizzy hair but it’s getting better.

Hi, sorry for jumping on your thread when I have no advice. I'm taking 20mg prednisolone to possibly help support a pregnancy. I'm not taking it because of a known problem, I'm taking it in case I have NK cells. What do you mean when you say your immune system goes into overdrive? Is this something to always expect when coming off the pred, or is it because of the reasons you're taking it?

The experience of two family members is yes, take it slowly, and believe your own body before any particular tapering schedule. Schedules are a guide, and can give a good idea, but your body is unique - respect what its telling you.

@Daffodil21 I have rheumtoid arthritis which is an auto immune disease. There are drugs which can control it and I had been stable for years but had to stop taking those drugs for a while due to other treatment for cancer. I was given the prednisolone to tide me over until the proper drugs started working again. I was symptom free when I tried to reduce the dose and within days my RA had flared up so badly I was in a huge amount of pain. This is what I meant by my immune system going into overdrive. I have no knowledge of NK cells so you would not react in the same way.

@wonkylegs That's reassuring!

I have been on 4mg for two weeks now, I had a few aches and fatigue over the first few days and feel normal now. I will give it another week and go to 3.

@Grausse thank you for that, and I'm sorry for all what you're having to deal with

Yes, need to reduce very very slowly, I have Cushings from using topical steroids for decades. I have been tapering all of this year, am just now off the steroids completely and life is still very weird.

I am spaced out, fatigued, if I am not careful I just zone out, I have lost many hours in the last week or so.
However, I have seen no rebound in my skin condition, and am trusting that I will feel more with it in time.
This was with a very slow and controlled taper, doing it too quickly would I think be horrendous, take it slowly peeps!

@Yddraigoldragon that's awful I didn't know you could get cushings from topical steroids, but brilliant that your skin remains calm. (BTW I recognise your username from years ago. HayDay?

Cushings is difficult to get diagnosed, the endocrinologist was absolutely sure, and the skin chappie I saw about tapering was convinced it wasn’t possible. But I am off the steroids and symptoms are reducing, e.g. I was getting bleeds under the skin which are clear now.

And yes, hay day, would I recognise your name there?

Hmm I get what looks like bleeding under the skin . I assumed it was bruising because of the steroids but it's red rather than purple.
I can't remember what my name was - I haven't played for years GrassyBottom maybe? Do you still play?

Grassy! Hiya! Sort of, I haven’t been on much for the last fortnight, but generally play. Sibbs and apple still about and a few others.

My bruising was red, dark red and blotchy, and at one point I only had to gently scratch my arm to get red lines. I had all sorts of bruises without any recollection of a knock. I was seeing another consultant who spotted the bruises and referred me to endo. Worth checking symptoms on google images, just in case?

Ah I used to love it. Played on an iPad which broke. Started new games on android but it wasn't the same without the MN crew_- sibbs and apple.
Yes mild scratch on arm = red lines. I have had so many health problems in the last year I refuse to have another.