Seeking GCA advice for a friend

[ThisTooShallPass]

Hello everyone! I’m writing from Nova Scotia. It’s probably been 7 or 8 years since I last asked for your guidance on my own “journey” with GCA, and so appreciated it at the time. I see some of the same names as I saw back then are still helping, and I applaud your service and the advice you’ve given so many of us!

This time the advice I ask is for a friend, diagnosed last year with GCA. She is not online, doesn’t have a computer, and asks my advice from time to time. I give it as best I can, but my situation with GCA wasn’t the typical case. It will be 10 years this April that I had sudden vision loss, and am now considered legally blind. It happened very quickly and without any of the typical warning symptoms, they call it Occult GCA. Over the next almost five years I was on Prednisone, for three years on dosages from 25 to 60 mg. Happy to say I’ve been off Pred since 2020, and I manage just fine with the tunnel vision in my one eye I have left!

When my friend was diagnosed last year with GCA, her symptoms were the typical headaches and jaw discomfort. I printed off information for her from this site, to help her understand GCA and how to treat it. I ask her each week how’s she’s doing, as she and I bowl in the same league each Monday. I’ve stressed the importance of being on a sufficient dosage of Pred to suppress the inflammation, and if any of her symptoms return she should increase her dosage. She’s had some flares since she started on Pred.

Earlier this week she was quite upset. Her Rheumatologist advised her that she’s been on Pred too long, and it was time to look at other treatment options. She was given single information sheets for each of Methotrexate and Tocilizumab SC, and told to choose one of those treatments. I haven’t taken either of these.

My first question is, being on Pred for just one year doesn’t seem to be that long. Is there an average duration of Pred for most people with GCA? I believe my friend is now on about 30 mg. Her Rheumy is concerned of her developing Pred side effects. Is she rushing things? I know I had to repeatedly take a stand with my Doctors to go slower, as I was afraid I’d go completely blind. Should I encourage my friend to take a stand?

I know for most with GCA, blood readings for CRP and ESR are a secondary consideration/indication as to when the dosage of Pred is not sufficient to suppress inflammation. That they should primarily be aware of how their body feels, and act on what their body tells them. For me, my body never told me anything GCA related, so I had to entirely rely on bloodwork.

So, another question is, how does your body usually feel when your dose of Pred is not enough with GCA. I remember each time I lowered the dose of Pred I was taking, I’d have a couple of days where my body felt tired, achy. But that was just my body adapting to the new dose, not the start of a flare. For my friend’s benefit, is it when her GCA symptoms return, a headache or jaw pain, is that when she should up the dose again?

I appreciate that my own Occult GCA experience may be influencing/biasing what I want to advise my friend. I want to tell her to take a stand, and convince her Rheumy to first get her GCA under control, by getting to the dosage of Pred that keeps the inflammation at bay. Then, in smaller amounts and slower durations, attempt to taper. Try that for six months, before looking at other meds that may or may not help!

Your opinions, as always, are much appreciated.

[DorsetLady PMRGCAuk volunteer]

hi again,

As an ex GCAer also with sight loss and in remission since 2016, then I can certainly appreciate your concerns for your friend.

If she’s flared a number of times, then sounds as if she been rushed to taper too quickly, and as for Rheumy saying she’s been in Pred too long! I do wonder where some get their information from.

I was on Pred only [Tocilizumab not approved in UK at the time] for around 4 years, but did have a late diagnosis so my GCA was probably about 5-6years in total, but for most people it seems be around the 4 year mark.

TCZ is successful for some patients, but not all… and the same may be said for MTX… but if neither are, then it’s back to Pred. Although both/either used alongside Pred may help her reduce the doses more quickly , so that may be an option, rather than instead of.

Obviously if she isn’t on enough Pred for her GCA, then she may well get a return of symptoms and yes the ones you mention are the obvious ones.

My opinion, like yours would be a slower taper for the next few months - and in honesty a different Rheumy [if that’s a possibility] who has a better understanding of GCA and is less adverse to Pred.

[ThisTooShallPass in reply to DorsetLady]

Thank you DorsetLady! I feel so bad for my friend. She has all the usual Pred side effects, and her obvious discomfort just takes me right back to that time, and the difficulties of pressing on when you feel so low.

I'll print off more info for her, and perhaps make a table for her to better track her dosages and tapering outcomes.

I value your opinion, and appreciate your response. All the best!

[DorsetLady PMRGCAuk volunteer in reply to ThisTooShallPass]

You know your way around the forum, but if you cannot find anything then just ask…and it would be a good idea if you can devise a simple form so she can monitor her tapering and effects [good or bad] thereof.

[PMRpro Ambassador]

Welcome back!!

I imagine his concern is that she is still at 30mg after a year - more than likely due to him being overenthusiastic with tapering and causing flares. As DL says, it isn't the end of the world, even if he is convinced she should be lower, but if she has had repeated flares, that would be a signal to the medics that pred alone isn't good enough - the fact that pred must be used the right way seems to escape them!

At least she is being offered tocilizumab (TCZ) which is a proven steroid sparer in GCA and in general works pretty well to get to a very low dose of pred. It does work for almost everybody - but only for about half of patients to get off pred entirely. GCA inflammation is caused by up to at least 3 different mechanisms - TCZ only works on one of them, if your GCA involves the others, pred continues to be required for the other inflammation. But it is usual to be able to get below 10mg before getting stuck.

I tried a month of methotrexate and found it awful! The fatigue was overwhelming and it actually meant I developed pred adverse effects I'd never had before! I've been on TCZ for 2 and a half years and had no problems at all - I don't have GCA but was stuck at nearly 20mg pred after years of PMR. With TCZ I have got to 7mg pred.

[ThisTooShallPass in reply to PMRpro]

Thank you PMRpro, always appreciate your insight! You continue to fight the good fight, and I know it can't be easy. Your experience is so helpful.

I'll print off these replies, and share them with my friend. It may help her choose how she wants to go forward.

All the best to you!

[PMRpro Ambassador in reply to ThisTooShallPass]

Is there a limit in Canada for duration of use of tocilizumab? I have no limit but officially it is prescribed for inflammatory arthritis - in the UK there is no limit for arthritis but it is still 1 year for GCA. Every country seems to be different.

[HeronNS]

As PMRpro asked, here is the Canadian guideline, and TCZ is limited to one year:

cda-amc.ca/sites/default/fi...

Although it seems people not in remission do have an option to continue. Not sure about coverage.

[PMRpro Ambassador in reply to HeronNS]

Thankyou.

[ThisTooShallPass in reply to HeronNS]

Thank you HeronNS! Hope all is well with you!

[HamiltonCANADA in reply to HeronNS]

FYI Longer term funding is possible in Canada. I am just reaching the end of 2-year funded TCZ weekly injections in Ontario, I did a slow Pred taper starting at 50mg per day that took 22 months to complete. Now at two month point of TCZ bi-weekly injections on my recovery from GCA (LVV) and PMR. My treatment plan is 4 more months of bi-weekly TCZ.

[PMRpro Ambassador in reply to HamiltonCANADA]

How do you go about it - do you know or is it a well-kept rheumy secret?

[HamiltonCANADA in reply to PMRpro]

My Rhumey did an apication with Health Canada on my behalf. Roche was also involved in providing dome find8ng. Also arramged by my Rhuemy. My private benefits plan picked up rhe small residual cost.

[HeronNS in reply to HamiltonCANADA]

Sounds much more straightforward than the song and dance my husband has been going through to get a very expensive eye treatment covered. He's had to make all the applications himself and it hasn't always been clear which of his eye specialists is considered the actual referring physician! But it's certainly worth the trouble.

[HeronNS in reply to HamiltonCANADA]

ThisTooShallPass Assume you saw this reply as it's in your post!

[ThisTooShallPass in reply to HeronNS]

Yes, I'm following along thanks.

[Gangley]

It's so nice of you to try and help your friend. My Rheumy immediately started me on 60 mg Pred and also applied for coverage of Actemra (Tocilizumab) which she said would help the prednisone get working. I did both for one year when results indicated that my GCA was resolved in Jan/24. The 2 sure worked well for me so maybe your friend should stay on Pred dosage directed by Rheumy & get Actemra as well. Any signs of the jaw/headache should be dealt with immediately, as you can well appreciate in your situation. I guess this nasty disease wasn't ready to let me go, so as of this Sept. I'm back at square one. I wish you both well.

[ThisTooShallPass in reply to Gangley]

Thank you Gangley! I appreciate you taking the time to comment, and share your experience. Hope things improve for you!

[Gangley in reply to ThisTooShallPass]

Thanks. One day at a time.

[Wilson1952]

rrogent man. Two weeks later he lost one eye and within three weeks the second one was gone. We have been dealing with this for over two years and it's not pleasant..so please keep taking your prednisone and if they say try other things be slow on prednizone maybe use Actemra if they suggest it. My husband takes pred. and actemra on his second year to protect his organs from the Prednizone is on 7ml now and we are lowering very slowly about 4 to 6 weeks. Hope your friend stands up to her doctor and ask to be able to take Pred with Actemra or find another doctor. Wish we had. Hello from BC.

[ThisTooShallPass in reply to Wilson1952]

Hi fellow Canadian! Thanks for sharing your experience, and your kind advice! Hope things turn out better for you both!