CGA - tapering from 20Mg after 4 weeks.

[Groda]

Hi Warriors.

I was diagnosed with CGA end of July 2023. Have tapered down from 60Mg to 20mg. Have been on 20 mg for 4 weeks. I think a very slow taper would be the best and am thinking going down by just 1mg to l9mg for 4 weeks before going to l8mg. Or should I go down now by l0% which would bring me to 18mg. I will stay on the dose for 4 weeks.

Thanks for any advice. My rheumie suggested I go to 17.5 from 20 but I think that is to big a drop.

[DorsetLady PMRGCAuk volunteer]

1mg sounds very sensible… as does the 4 weeks timescale..

Good luck with it!

[Groda in reply to DorsetLady]

thank you DL. Will stay on l9 mg for 4 weeks.

[PMRpro Ambassador]

You could try the 2.5mg using a slowed taper and see how you get on - and if it doesn't feel comfortable revert to 1mg. We, of course would support 1mg - how much resistance will you meet from the rheumy>

[piglette]

My rheumie wanted me to go down from 20mg to 15mg it was disastrous. I did just manage 20mg to 17.5mg. Personally I think 1mg every four weeks doing it slowly is better than large reductions that course problems and means you have to increase the dose again and yo yo.

[Portugal123]

, 12.5 mg for 2 weeks, 10HiI was diagnosed with GCA in May 2023 and started on 60 mg Prednisolone. I was given a regime by my rheumatologist which stated dropping to 17.5 mg Prednisolone from 20 mg. After that 17.5 mg for 2 weeks, 15 mg for 2 weeks, 12.5 mg for 2 weeks. Then reduce by 1mg every 4 weeks until you get to 5mg. From 5mg reduce by 1mg every 2 months until you stop altogether. I am now on 7mg and it is working for me. I hope this helps. Good luck

[musicalJ]

I was diagnosed with PMR & GCA in February this year and put on 60 mg prednisolone. The reductions of 10 mg every 4 weeks were fine until I reached 20, but in July I went from 20 to 15 and had to go back up. Now, coming down 1mg at a time, I've reached 17mg. Hoping to go to 16mg soon.

[Groda in reply to musicalJ]

thank you musicalj.

I plan on doing exactly that. Go down by 1 mg every 4 weeks. Started 19mg today.

Groda

[Gangley in reply to Groda]

Hi Groda: Thought I'd pass on the schedule I had to get off prednisone. I was on 60 mg for 4 weeks; 50 for 1 week then down 5 mg every week till I got to 20 then went to 17.5 for 1 week, 15 for 1 week, 12.5 for 1 week, 10 for 3 weeks, 9 for 2 weeks then down 1 mg every 2 weeks till I got off. I have never to go up or down - also I'm Actemra so maybe that has helped. Other gals on my support group thought this was fast but seemed to work for me. Good luck!

[Groda in reply to Gangley]

Thank you Gangley, I will see my rheumy on Dec 19. I will discuss with him the tapering down from 20mg. I intend to stay on l9mg until I see him. That is 3 weeks or so from now. Hopefully I can get Actemra. Problem is I go back to Florida 3rd week of Jan. Don't know if I can take enough Actemra with me to last 3 months. I guess the rheumy will advise me. I live in Canada and I don't have to pay for the Actemra because my GCA was proven with a biopsy.

[PMRpro Ambassador in reply to Gangley]

Can I just note that that is a schedule that would ONLY work with Actemra - it would be crazy to try it unless you are able to be put on Actemra at the same time and that is not going to happen easily in the UK - just to inform anyone in the UK seeing this.

[DorsetLady PMRGCAuk volunteer in reply to Gangley]

Good that’s it’s worked for you, but agree with PMRpro-

a. that tapering regime might work on Actemra and

b. you need to be aware that Actemra is not available to the majority of GCA patients in the UK and then it is limited to a year

[Groda in reply to Gangley]

Hi Gangley. Thanks for your tapering history. I am not likely a candidate for Actemra because I have diverticulosis. My rheumie told me today that Actemra can cause this condition to flare into full blown diverticulitis, which might not get calmed down with antibiotics, which is the normal course of treatment when the DV acts up. It could lead to a perforation of the bowel, requiring emergency surgery. When I get back from Florida in mid April I will see him to again discuss the pros and cons of Actemra depending on how my tapering goes.

[Gangley in reply to Groda]

So sorry to hear that you won't be able to take Actemra - it sure helped me get off prednisone. Hopefully your Rheumie can come up with something as effective. Have a nice Florida vacation.

[Groda in reply to Gangley]

thanks Gangley. It is disappointing that I likely won't get Actemra. But the downside is very dangerous, if it were to happen.

[Grammy80 in reply to Groda]

Reducing 1 mg. every 4 weeks worked best for me. Good luck! 💕