Need tapering off steroid support

[sara1215]

Hi,

I have been on Medrol ( similar to prednisone) for two and a half years. My highest dose was 30 mg. I am in the process of tapering off very slowly and would really like to hear your taper stories. I have many of the withdrawal symptoms that are listed and some that are not like swollen ankles and occasional burning skin. I really need to see the light at the end of the tunnel. How long until your adrenals kicked in?

[Mandalou]

Hi sara

Two and a half years is a lonnnggg time to be on oral steroids!

Plus 30mgs at your highest is a big dose and I know because mine was 40mg😱 but I started to taper with a hand written plan from my GP.

I remember being gutted as I had come off them but was then told to start again between Sulfa and Leflunomide.

I only ever went up to 10mg daily second time around.

My taper was a week at a time process and done biting 5mg tablets in half. I then did alternate days.

You cant rush it and you have to take it seriously.

This forum helped me.

Good luck

Mx

[Nsmith13 in reply to Mandalou]

That's what I'm doing at the moment I'm down to 10 try to do 7 /8 it's difficult

[Gigi71]

I know with prednisone you can get 1mg to help with tapering down. I would ask you rheumy nurse for their advice with a suitable plan for you. X

[Nsmith13 in reply to Gigi71]

Yes I've got 5 /2/1

[HappykindaGal]

I as on Pred for 2 1/2 years. Came off 8 weeks ago. First attempt, it was too fast and had a flare and back to 10mg again. Second time, I took the advice of a US Doc. He said it's about the percentage reduction, not the mg.. What he meant was, coming down over 50% each week was too big a drop so alternate days when getting to the lower end <5mg.

I found that the Pred masked my symptoms and despite taking mtx and Sulfa, my levels spiked up again and I've been approved for Biologics.

I didn't get the withdrawal symptoms from the steroids though following the advice from the doc. The final week was half a gram tablet a day.

Hope that helps a bit.

[Mandalou in reply to HappykindaGal]

That all sounds extremely sensible advice Cwendyn. I too did the alternate days thing.

Mx

[Simba1992 in reply to Mandalou]

Do you mean intermittent day dosing? Alternate day dosing means that you take dubble dose every other day and none every other(?)

[Mandalou in reply to Simba1992]

No Simba, I meant once I got down to 2.5mg a day I took that dose every day for a week then the following week took 2.5mg every other day then 1mg every other day for a week then stopped.

That's what I meant by alternate days.

Mx

[wildone65]

i've been on it since april 2016 and hopefully i will be taken off next week. i should have been taken of in april this year only the hospital for got my appointment so was sent one for july then that was cancelled untill Wednesday next week. I'm having blood tests done this Thursday ready to take with me.

[Mandalou]

Good luck Wildone, hope your bloods are good and your appointment tones well.

Mx