wise ones…

[Tealblue2]

hello all.

you are so full of knowledge I thought I’d ask you as I am as ever doubting myself.

for the last couple of weeks I have really started to feel well. They have thrown loads of meds at me and I felt something like ok for a week or two. But then of course comes the inevitable reduction of steroids - I’m only down from 15-10mg and it’s been 11 days

But I was floored yesterday and now I’m really stiff this morning and my wrists and ankles hurt

But I really want and need to get off these steroids. I’ve had a busy week. So have I over done it and am suffering, or are the meds not working as well as they seem to be with steroids - I’ve never got to a place where I am normal so I second guess everything…. ???

[springcross]

Hi Tealblue2. I was only on 5mg but my rheumy told me to reduce by 1mg per month and no more. Even just being on 5mg, I did feel the reduction each time but it usually only lasted a week or so.

[Tealblue2 in reply to springcross]

Thank you. They just told me to go down 5mg every 2 weeks.

Whenever I’ve been on a reduction before the meds I’ve been on haven’t worked and the inflammation has come straight back….

[springcross in reply to Tealblue2]

I hope you get relief soon.

[wilbertjellyfish in reply to Tealblue2]

I have the same problem when I cut my steroids I'm for nothing. I was also advised to reduce really slowly. The last time I reduced from 15 mg down I did it in 0.5mg increments. I got to 12 and had to go back to 20mg. Have you been tested for adrenal insufficiency? I have it and they allowed that if I got to. 10mg I could stay there.

It's miserable being sore . I'm starting to feel less painful as I now have a opioid patch and I think my pain receptors had gotten so fired up because I was so sore for so long I had no hope of cutting the steroids.

It's important to get them down but you have to live so maybe put them back up and try again 1mg a month or even 2 months.

[AgedCrone]

Were you told to reduce Pred by 50%..or did you just do it? Speak to your rheumy nurse about it!

[Tealblue2]

I was told to go down 5mg every 2 weeks by the rheumatology doctor. To get down to 5 or nothing by Christmas, as soon as the other meds had been in my system 2 weeks

[medway-lady]

It depends on how long you've been taking steroids if it's only a couple of weeks then you'd be able to just stop if it's been months then the last bit is worse. But how long have you been on RA medications as they take sometimes 12/14 weeks to work so it might be early days to see an improvement in your level of disease. Your best guided by your RA nurse or Consultant so ring them and ask what to do. But I'd urge you not to go too quickly off steroids if you've been taking for over 3 months or more.

[Tealblue2]

I’ve been on steroids for 1 1/2 years bar a couple of weeks. I’ve been on the biologic since June but they doubled my dose at the beginning of November. I’ve been on leflumide since the last week of October… was told to give it 2 weeks from the beginning of November to start coming off the steroids

[Runrig01]

I am concerned with the rate they expect you to drop, after 1.5yr on steroids. I was on 40mg for GCA, and was told to drop 5mg a month, till I got to 20, then 2.5mg till I got to 10mg, then by 1mg till I got off. I had made it down to 2mg, but was feeling extremely ill, so went back to 5mg. I got to 4mg before collapsing at home one evening. I was found to have severe adrenal insufficiency, which was diagnosed when i had a severe stroke due to an adrenal crisis. They found 90% of my adrenal glands had atrophied, and will never recover, so need steroids for life. The slow taper I mentioned above, is to give the HPA axis time to wake up. From an adrenal point of view, a dose of 3-5mg is needed to cover day to day functions. If you get to 5mg or less, and get symptoms like nausea, weight loss, lightheadedness, low blood pressure, then you need to get your gp to check your cortisol levels between 8-9 am, having held off any steroids for 24hrs, including inhalers and ointments. Then you can take the pred straight after the blood test. This will let you know, if it’s safe to continue reducing. At the moment I’d advise returning to the last dose you felt well. Go at your pace, don’t be tempted to go too fast, the HPA axis needs nudging, it doesn’t suddenly switch back on, and can take a year to fully recover. So stay safe. Sadly I knew something was wrong leafing up to my stroke, I’d phoned the gp and asked could I return to 5mg, till I seen the endocrinologist in 3 weeks, as I’d already requested a referral suspecting AI. He said No, 24hrs later I had the stroke. The endocrinologist said had I increased the dose I may have averted the crisis. So never again, will I follow Drs orders, when my gut says otherwise. I now carry an emergency intramuscular injection at all times, with family also trained to use it, and have to plan every day, and think what would my adrenals do, and dose accordingly, or face another crisis 🤗

[1ChLoE]

Hi I was also told by my rheumatologist to reduce my steroids. I tried reducing using the advice from my rheumatologist. I found my pain returned. I was really struggling until I read on her method on here for a very very slow reduction of my steroids. With this very very slow reducing I was able to stop my steroids. I have since had to go back on steroids twice for a flare, but have managed to stop my steroids after each flare.

[Lolabridge]

I had to reduce very slowly from 10mg, by only 0.5mg per month. Following that regime I was able to get off them with no ill effects.

As others have suggested I do think you may have been reducing too quickly hence the problems you are experiencing. Do get back in touch with your rheumatologist explaining your symptoms and ask if you could go down more slowly.