GCA tapering

[Groda]

Hi community of GCA warriors.

Just got back today from Rheumi appoint. I am currently on l8 mg of pred since Mon. Dec. l8, 2023 and will stay at l8mg until Dec. 31, 2023. My problem is I will be in Florida from Jan 20 to mid April and I don't want to flare while I am away (or anytime). Your advice would be helpful. Should I follow his schedule or slow it down to no more than l0% decreases?

His schedule for me as of Jan. 1, 2024 is:

Jan. 1 to Jan. 14 - l5mg; (2 weeks) * (decrease of l6.5%)

Jan 15 to Jan. 28 - 12.5 mg; (2weeks) *(decrease of l6.3%)

Jan. 29 to Feb. 25 - 10mg. (4 weeks) *(decrease of 20%)

Feb. 26 to Mar. 24 - 9 mg (4 weeks) (decrease of l0% - OK)

Mar. 25 to Apr. 21 - 8 mg (4 weeks) (decrease of just over l0% - ok)

April 24 is next Rheumi appointment to see how I am doing.

* I am concerned about tapering more than l0% from the l8mg to l5mg on Jan. 1 and continued tapering of more than l0% every 2 weeks then every 4 weeks.

[piglette]

sounds like your rheumi is hell bent on getting you off steroids. I agree I would be rather worried about their haste. I feel just two weeks between reductions does not leave you enough time to ensure that you are not going too fast. Have you said anything to your rheumie about the fairly fast taper?

[cycli]

Sorry Groda but it looks like nonsense to me. GCA is not to be messed with. Are you on Leflunomide or another to help reduction? I needed this to reduce from 22mg as I flared 3 times at that level. I'm now down to 7.5mg but I reduced by 10% from 22mg at 4wk intervals or even longer until I felt it was stable with no symptoms. Doing it because someone sets the level for you is nonsense. Too much too quickly is a bad course. Do it to suit yourself and the way you feel. Anything else is simply wrong in my opinion.

[Groda]

CGA tapering: I am not on Leflunomide as I don't have rheumatoid arthritis. Am on alendronate and statin for cholesterol. I will follow my instincts and the forum advice of tapering down only by 10% and staying on that dose for 4 weeks to make sure I am stable.

[Bcol]

Hi Groda, think the others have already said about the speed of the decrease, daft. Just to add, make sure you have enough Pred with you to cover all the time you are away plus am emergency supply.

[DorsetLady PMRGCAuk volunteer]

You may be able to drop down in the amounts he suggests - many GCA patients can do 20-17.5-15-12.5-10mg - but at 4 week periods not 2 weeks.

As we have said many times, 2 weeks is not long enough to KNOW current dose is controlling your illness before you drop to a lower dose.

Just for info once I got to 15mg, I started reducing by 1mg a month…but my late hubby was very ill by then… so I and my doctor agreed it was a sensible approach. But that was my situation not yours.

However, if I were you I’d go for 4 weekly reductions - and if you have a ‘wobble’ within those 4 weeks then back to previous dose.

[PMRpro Ambassador]

That is a theoretical taper - and very much in line with what appears to be current thinking to get patients to a low dose of pred as soon as possible. However - our experience is that 15 to 10mg is a difficult place and slower tapers - longer at each new dose - or smaller steps are much better in terms of avoiding flares. Two weeks really isn't long enough to know a dose is still enough. It does all depend on your access to pred though doesn't it. Have you got enough pred while away to do smaller drops/longer rests?

Leflnomide wouldn't be for RA - it is sometimes used as a steroid sparer in PMR/GCA but like methotrexate, it is a bit hit and miss.

[Grammy80]

Hi Groda, Recently, because of another health issue, I went from 1 mg to 60mg along with Actemra. Personally, tapering to 10 in fairly short order...3 weeks instead of 4 at each change didn't bother me. Now that I'm reducing from 10mg, it is done slower. Would you feel better if you told the rheumy what YOU planned to do up front? If I express concerns to my guy....he goes along.

You've gotten great advice here and enjoy your vacation. (I'm a 4+ years GCAer...with lots of patience. It isn't a race!)😎💞

[Groda in reply to Grammy80]

Thank you Granny80. My GP called me today to talk about my latest blood results. I then told him of my plan to reduce slower than what the rheumi suggested. He is onboard with that seeing I will be out of the country for 3 months. My GP prescribed all the 5mg and 1mg pills that I could possibly need and lots more in case I have a flare. My GP is the one who prescribes the prednisone. He will relay to the rheumi that I am doing a bit of a slower taper than rheumi has suggested. Both these doctors are patient and understanding and are not at all 'my way or the highway' types. I am very lucky.

Groda.

[PMRpro Ambassador in reply to Groda]

Your GP sounds like a keeper!

[Grammy80 in reply to Groda]

That's great! Now all you have to do. Is have a wonderful vacation💕