Down to 6mg but feeling it! Shall I persevere?

[MiloCollie]

I went to Cape Verde on holiday at the start of December and was worried I may have a flare. I was on 7.5mg pred and I was great. Since then I’ve gone down to 6mg which I’ve now been on for about 8 days and am feeling weak. I have some pain in my upper arms but not unbearable like when diagnosed and stiff hips and lower back. I also am so tired. I’m sleeping at night but then can also sleep in the day for a good 2 to 3 hours. Does this sound normal? I want to persevere and get off steroids asap. I am diabetic and need laser surgery for diabetic retinopathy which I’m having this afternoon!!! I know if I took an extra few mg of pred I’d feel better but will it settle if I persevere at 6mg? Any advice appreciated xx

[SnazzyD]

If I had dropped 1.5mg in less than a month I would have been floored. If it were me now, I’d go back to 7.5mg and perhaps drop 0.5mg per month at the fastest. Sounds like you adrenal glands can’t make up the loss quickly enough for the drop you’ve done.

[MiloCollie in reply to SnazzyD]

Thanks yes I suspect you’re right.

[DorsetLady PMRGCAuk volunteer]

As SnazzyD says - too big a reduction ... much more sensible to only drop by 0.5mg a time from now on.

No matter how much YOU want o be off Pred, even for very good reasons, if your PMR say "No", then the answer is no.

Good luck this afternoon.

🌸

[MiloCollie in reply to DorsetLady]

Thanks and thanks for your good wishes 😀

[Viv54 in reply to DorsetLady]

I should have listened to you in the first place ! I may have been in a better place by now ! I am on my third attempt at tapering ! This time im sticking with your 0.5 and nothing or no one is going to rush me !Happy New Year , best wishes Viv🌷

[DorsetLady PMRGCAuk volunteer in reply to Viv54]

😇…

[Koalajane]

I hope your laser surgery went as well as mine. It was so fast and pain free

[MiloCollie in reply to Koalajane]

Thanks. Yes it did My eyes are just a bit dry.

[PMRpro Ambassador]

You went straight from 7.5 to 6mg in one go? No wonder you feel ropey! Any step down should be no more than 10% of the current dose - that is 20%.

You think you are getting to zero faster - but either you risk overshooting the dose you need and have a flare or your adrenal function can't keep up at this level and you feel awful, So you end up going backwards, get upset and disillusioned, which causes stress and that can cause a flare too. Remember you are never heading relentlessly to zero - you are looking for the lowest effective dose at any given time. Some people get to zero to find that in the meantime the autoimmune disorder has in fact burned out - but they are the minority. Most of us stick at some point - or several points. But most of us get there eventually with patience. But the worst thing you can do is try to force a drop - you usually end up going back to a higher dose. The sooner you admit that is happening, the better you get on.

[Viv54 in reply to PMRpro]

Spot on,Im on my third attempt to taper,but this time its 0.5 at a time. Done the rushing just gets you back if not worse to where you started ! Happy New Year to you . Viv🌷

[HeronNS]

What the others said. I often quote something I believe PMRpro said long ago, "It isn't slow if it works."

[piglette]

As SnazzyD says if I had dropped by that amount in one go I would be slowly dying. It would take me three months to make that sort of reduction.

[Lafontainepam1]

After 10 years I’m still trying! My Dr. Wanted me to drop 1 mg. a month! After doing that, and suffering with the pain, I started my 4th month at 1/2 a mg., much better! I know better but was crazy enough to try it! I’m at 61/2 and happy. Will try the slow method for January, 61/2-6😎