GCA Taper from 60 mg

[Pamk1949]

I had unconfirmed (negative biopsy) GCA 5 years ago and tapered very slowly from 100 mg to zero. Two months ago in July, I had visual, throat and jaw symptoms. My neuro-opthomologist did a temporal biopsy, and this time it was positive. The rhumatologist treated it like a new occurrence and started me on 60, with a methyl prednisone IV for 3 days.

She wants me to lower 10 mg every 2 weeks, stopping at 20 (in two months time). It sounded good to be dropping that fast, but in your opinions —-is that too fast from 60 to 20 in two months?

I recently saw posts saying that is too fast of a taper. I believe I will be starting Actemra soon, but for some reason not until next month? Just checking in with all of you and the Ambassadors because this site has knowledge, and has my trust! Thanks. PS: I’m in the USA

[DorsetLady PMRGCAuk volunteer]

hi,

Sorry to hear it’s reoccurred….by Rheumy’s initial action correct, although not 100% sure of taper.

Can you confirm how long you have been on 60mg….if long enough then her taper may be more realistic, but you are much more likely to flare early days which would be my concern. …and at what dose is she intending to introduce Actemra when quicker drops may be achievable.

My taper down to 20mg was as follows (different scenerio - sight loss and no Actemra ) so not saying it’s what should be followed, but just as an example -

80mg - 2 weeks

60mg - 8 weeks 

55mg - 2 weeks

50mg - 3 weeks

40mg - 2 weeks

30mg - 3 weeks

25mg - 4 weeks

20mg - 5 weeks

[Pamk1949 in reply to DorsetLady]

Thanks DorsetLady for your reply. I was on 50 mg for a few days initially, then the IV Methyl Prednisone for 3 days, then 60mg for 2 weeks. After that I’ve been dropping 10mg every 2 weeks, and currently on 30. I have delayed the drop to 20 because of my sons wedding. I’m not sure why she decided on waiting til October for Actemra. Should I stay on 25-30 for longer, or maybe even increase?

I found records from the past 5 years and I tapered much slower off the initial high doses. I just though this fast taper was something new since 5 years ago.

[PMRpro Ambassador in reply to Pamk1949]

Did you have the i.v. pulse therapy the first time? That should make a difference.

[Pamk1949 in reply to PMRpro]

yes, but the first IV pulse was for 5 days

[PMRpro Ambassador in reply to Pamk1949]

Ah - interesting, never heard it used for that long - is it a different medical team?

[Pamk1949 in reply to PMRpro]

it was an eye emergency clinic where we used to live in Miami Florida—and the IV was outpatient—didn’t have to stay in hospital

[DorsetLady PMRGCAuk volunteer in reply to Pamk1949]

I would stay where you are for the moment……and see how you feel after your son’s wedding,

[Pamk1949 in reply to DorsetLady]

👍thank you , yes I’ll stay awhile where I am until things settle down!

[Pameliza]

I had a positive biopsy for GCA in late 2019 and was started on 75mg prednisolone with a slow tapering to 20 mg then much slower still. I suffered very badly with side effects even becoming suicidal as a result. I never wanted to go through all that again. Earlier this year I had an episode of vision loss and emergency gave me IV methyl-pred. A week or so later it happened again and I went to emergency in our biggest hospital. I was given 1 g of IV methyl-pred and threatened with 2 more g in the coming days. With no more episodes, I missed out on that but was put on 60 mg with rapid tapering to 20 mg then slow tapering down. Within a week, I started to lose muscle mass again, became incontinent again and was terrified all my other side effects would come again. It wasn't GCA causing the problem thank goodness and I am glad to have been given the rapid taper. The incontinence is nearly over and the worst side effects were at minimal levels. It is OK to come down fast if prednisolone has only been used a short time provided the GCA or? is fully under control. But for the accompanying PMR it is another long story.

[ubaoz]

I've had a similar experience with GCA, starting with 3 days of IV methyl pred and reducing from 50mg (via 60mg for a short while as symptoms came back) by 10mg every two weeks.

While I was pleased to be coming down from those crazy high doses, it didn't work out too well for me as I ended up getting withdrawal symptoms from the pred and felt absolutely terrible. To the point where I could barely function. 'Resting' for a few weeks without reducing (at 25mg) let my system catch up and I'm now continuing to reduce, albeit much more slowly and only in 10% drops. And feeling a lot better than I did.

Everyone is so different though, so I could only suggest you monitor how you're feeling and if it's not for the better, then I would discuss it with your rheumatologist and see if the taper could be modified. But if the taper works well for you, then that's great. Good luck!

[PMRpro Ambassador]

It is fast - but if you have no relapse of symptoms it is OK. How strange that you have to wait for the Actemra - or is it a funding issue requiring approval? However, having had the i.v. pulse therapy to start with it is supposed to be much easier to reduce the starting dose . Many doctors say that lower doses are plenty for GCA except that the high doses are used to reduce the inflammation quickly to minimise the risk of visual loss. You had that with the pulse therapy.

[Pamk1949 in reply to PMRpro]

thanks for reply PMRpro! I think I’m good with my insurance and Actemra—that’s not the problem —getting in touch with rheumatologist is another story. But I do have withdrawal symptoms from the big drops. Maybe I should slow that down a bit@?

[PMRpro Ambassador in reply to Pamk1949]

How long do they last?

[Pamk1949 in reply to PMRpro]

a few days. Right now feeling a little something behind right eye but only lasts for a few seconds, then goes away

[remission]

I have done a very slow taper and a fast one and what I discovered for me was that there isnothing wrong with a dramatic fast drop until you get to thelow numbers where you are just starting to notice your symptoms getting worse and then i would slow down and that worked best for me and i have been off pred for about two years. wishing you luck

[Pamk1949 in reply to remission]

thanks!

[Redwhitebooze]

Pamk1949 I don't have any experience with GCA but from what I've read, the high dose initially is to treat the symptoms of GCA. They want to get you to a lower dose of 15 to 20 mg ASAP to avoid any serious side effects of the prednisone.

[Hrblock57]

Hi,

I do not understand why you were on Prednisone 5 years ago for an unconfirmed GCA ? I M sorry after 5 years you were diagnosed with GCA . I was diagnosed with GCA last July 2021 after a temporal biopsy and immediately I started with 60 mg prednisone , after 2 weeks reduced to 40 and gradually tapered off based on my inflammation markers tested every month.

For the past 4 months I have been on 1mg Prednisone . I suffered a bit on the low dosage but eventually seems to settle down. I continue to see my rheumatologist every 4 weeks and blood tests are done also every 4 weeks.

Everybody's case is different I would suggest to just follow your doctor's instructions and discuss your fears and doubts with him/her after all you know your body the most. Even if needed try another doctor .

I wish you all the best and let us know your progress, we are all learning from each other. I get scared many times , each morning I wake up still in bed, I open each eye at a time if my vision is there and I thank God and my doctors . My father had temporal arteritis with different symptoms than I, He never went blind .

[PMRpro Ambassador in reply to Hrblock57]

A negative biopsy does not mean you don't have GCA, it means they couldn't see what they were looking for, Then they go on symptoms.

[Penny1955]

I tapered twice but only from 20 mgs of prednisone. I went online to see how to taper off prednisone. Then I compared it to my doctors tapering schedule and we discussed it together. Check online how to taper from 60 mgs to 20 . Good luck!! Hope you feel better !!!❤️❤️

[PMRpro Ambassador in reply to Penny1955]

The DSNS taper we talk about here has been used in a study by the leading PMR researcher in the UK and she approves of it. DorsetLady's version is much the same and there are rheumatologists who use both or something very similar. The versions you find online from official bodies such as BSR or NICE are far more drastic and often unrealistic - you need to look no further tan the FAQs here for tried and tested tapers.