GCA starting dose relapse?

[Gilmor]

Hi

Seems I might have a relapse, not that much symptoms but elevated inflammation markers so I think the reumy might want to be preemptive and ”nip it in the bud”. Have not had the meeting yet, but was more curious, what have your starting doses been at a relapse of GCA? 10/20/30/40? Depending on symptoms of course but still? My first taper was from 80 to 2, (80 since vision was involved) during 20 months. Hoping my starting dose will be a lot lower this time. Also, what is your experiences with Actemra/tocilizumab, side effects etc? One problem for me might be that it knocks out the inflammation markers which might be negative. And a thanks for all who contribute to the forum

[DorsetLady PMRGCAuk volunteer]

Three weeks ago you mentioned blurred vision and had were going to take 80mg and go to ER - so what happened there and what dose are you on now?

Personally I never had a relapse, but then my taper was very steady, with 2 weeks at 80mg [had lost sight in right eye] , then 8 weeks at 60mg before taking 4 years to get to zero.

You shouldn’t need to go as high as 80mg but at least 40mg, maybe 60mg - but that really depends on your doctor to decide.

No experience with TCZ - hadn’t been authorised in UK when I had my GCA.

[Gilmor in reply to DorsetLady]

You have a good memory 😉, after having an eye exam, and an ultrasound which both showed up with nothing the reumy decided to put me back on 10mg, have not had any other symptoms so far, but inflammation markers are still a bit elevated despite being on a pretty high dose so might have to up the doseage. I am now prepared for at least 1-3 more years, but might try Actemra during this taper, that is what my other reumy advised as a second opinion. Thanks

[PMRpro Ambassador in reply to Gilmor]

10mg is not "a pretty high dose" - by most considerations it is a low dose.

[Gilmor in reply to PMRpro]

Yes, but lower doses (5/7) have been able to keep my markers in check previously, so for me it is a bit higher but seems not enough to lower the CRP/ESR. But also no serious symptoms so will see what the reumy suggests

[DorsetLady PMRGCAuk volunteer in reply to Gilmor]

10mg is not high in relation to GCA …and regarding GCA patients I have a vested interest….

[Gilmor in reply to DorsetLady]

Yes, I was unclear meant more in relation to my previous dosing. And that this time I might have to manage the increased markers with a higher dose

[DorsetLady PMRGCAuk volunteer in reply to Gilmor]

okay

[PMRpro Ambassador]

I am on Actemra - for PMR rather than GCA, but I can't say I have any noticeable side effects.

I'm not convinced pred can be used pre-emptively. It has no effect on the actual disease process, it just relieves the inflammation that is created while the underlying autoimmune disorder is active. Tocilizumab/Actemra blocks the receptors that the IL-6 would attach itself to to create the inflammation - it doesn't work on the disease process either.

I suspect that most rheumies would choose to use 40mg in suspected GCA. If it is too much, then you will be able to reduce the dose soon and relatively easily because the underlying disease activity is lower.

[Gilmor in reply to PMRpro]

Thanks for the input/opinion will be back with an update what is decided. Think MTX was also disussed when I had my first incident but would rather stick with prednisolon, maybe also rather than trying Actemra. As I think you said side affects are there but know and often managable

[PMRpro Ambassador in reply to Gilmor]

MTX doesn't do much in PMR - the top UK GCA guru doesn't rate it at all

[Gilmor in reply to PMRpro]

Yes, read a bit about it and does not seem to be effective, so will probably not try it

[PMRpro Ambassador in reply to Gilmor]

Was bargling, sorry - MTX works for a small group of PMR patients, nothing demonstrated that shows a beneficial effect in GCA.

[MarksPoint in reply to PMRpro]

Hi there, I was very interested to hear that Metho is probably not that great for GCA and wondered if you could elaborate a bit on that and what those in the know think about it. I have been off Pred now for 8 weeks and have 8 more weeks of fortnightly Actemra injections left after which my rheumo (who I don't have a very good relationship with and am trying to find an alternative one), said I would then go onto Methotrexate. I really don't want to 'do' yet another drug in this horrible saga, I had pretty bad reactions from the high doses of Pred - sent me absolutely crazy full blown psychosis not to mention other horrible things, one of which has been constant mouth ulcers which are so damn painful when its 2 and 3 at a time, made eating most food impossible ! I noticed one of the main side effects from Metho is Mouth Ulcers so I am definitely not happy at the thought of that. I suppose I am looking for a way out of using the drug and I would really appreciate any info you have on Metho especially what the GCA "gurus " feel about it . It took me a year to reduce from 65 with no flares....I did the dead slow method much to the annoyance of my Rheumo I might add and swear I did well because of the help from you and all the amazing people on this site. But here I am 14 months on from the start of this nightmare and so far so good....fingers crossed ! and a BIG Thankyou to everyone !!!

[KASHMIRI1 in reply to MarksPoint]

I felt like you do about methotrexate but so far it been by beneficial in helping me to reduce pred which like you has given me horrendous side effects.

[PMRpro Ambassador in reply to MarksPoint]

Professor Baskhar Dasgupta, probably the top GCA guru in the UK has said clearly that MTX doesn't have a role to play in GCA - it was mentioned only recently and there is a post by jinasc with an extensive comment by him about GCA and including his opinion of its use in GCA.

healthunlocked.com/pmrgcauk...

LemonZest11 has had similar dealings - and managed to get her Actemra extended but her story s MUCH longer than yours.

Mouth ulcers with MTX are combatted by using folic acid - you may need up to 5mg 6x a week - not the 1x some doctors appear to think is enough,

[JuneWalker in reply to PMRpro]

My rheumatologist has given my Folic Acid since I started the methotrexate injections. She says folic acid is a must on methotrexate.

[PMRpro Ambassador in reply to JuneWalker]

It is - but then it depends on how much they give you. Some only offer 1x5mg, others anything up to 6x5mg, every day except MTX day.

[JuneWalker in reply to PMRpro]

I take 5 mg daily.

[PMRpro Ambassador in reply to JuneWalker]

But not on MTX day?

[JuneWalker in reply to PMRpro]

Correct

[MarksPoint in reply to PMRpro]

Thanks so much for your help and advice I will definitely go the Folic Acid route if Metho is the only way forward. x

[Flivoless in reply to PMRpro]

Great word, bargling. Apparently it's something I'm very good at 😳

[KASHMIRI1 in reply to Gilmor]

I have found methotrexate to be very good at helping my steroid reduction so far

[Plantingwithfaith in reply to Gilmor]

I’m a year into GCA starting at 60 now on 8mg w/monthly Acterma infusions no side effects at all for me. I feel lucky to have it. Anything that helps!

[Gilmor in reply to Plantingwithfaith]

Yes, might have to try Actemra so interesting to hear of real experiences. But then everyone is different but Actemra certainly seems to be an option/complement for many

[Agavegirl]

I’ve just had a GCA flare. Raised inflammatory markers, neck pain and headache. Rheumy put me on 40 mg for 3 days, then 30 for two weeks then more bloods. I’m currently at the 30 mg stage. Still got some neck discomfort but broadly OK.

[Gilmor in reply to Agavegirl]

Hope you do OK, I had neck problems as well as really the only symptom before problems with vision, but better now

[Frewen1]

Hi Gilmor - in two and a half years I've come down twice from 60mgs, and once from 20mgs (self-determined on that occasion)... still only got to 6mgs now. And am half way through a year of TCZ. I know the aim isn't to necessarily get to zero Pred, but I should like to get well under 5, and have a vague idea what it might be like to feel "normal" once more...

[DorsetLady PMRGCAuk volunteer in reply to Frewen1]

The ultimate aim probably is to get to zero, but it has to be in GCA's time, which undoubtedly isn’t yours, nor your doctors.

Have faith, and keep trying is all you can do.

[PMRpro Ambassador in reply to Frewen1]

And don't forget even TCZ only gets half of patients off pred altogether. There are at least 3 mechanisms that create inflammation. Only one of them responds to TCZ, the other two require pred and if they are in play you may need ongoing pred anyway.

[JuneWalker in reply to PMRpro]

Great knowledge you have. Actemra helped me with reducing the Prednisone to 0, within 2 weeks off the Prednisone and only Actemra, I suffered with head pain. Off the Actemra and back to 40 mgs of Prednisone along with Methotrexate injections. Actemra appeared to be working for me but in fact it wasn’t. Praying with a slow slow taper and Methotrexate in a couple of years I will feel normal once again.

[Gilmor in reply to Frewen1]

Thanks for your reply, yes there might be a remote chance for zero but more likely 6-7 for a longer duration, at least for me. Just hope to avoid to many setbacks with higher dose and tapering…

[JuneWalker]

I started at 80 mgs of prednisone for GCA in April 2022. I started weekly injections of Actemra on August 2022, tapered Prednisone to 0 on January 8, 23 while continuing Actemra. Temple pain on January 22, 2023. My inflammation markers went from 133.9 in April to 0.5 in 4 months. Petscan on January 19, 2023 showed inflammation in many large vessels. Discontinued Actemra (my experience proves Actemra masks the inflammation). I started weekly injections of Methotrexate on January 23/23 and 40 mgs of Prednisone. Very slow taper for at least 18 months. I feel remarkably better. Bloodwork weekly will continue. Numbess, tingling in face, hands and feet continue. All the best in your journey.

[PMRpro Ambassador in reply to JuneWalker]

It is known from studies that Actemra only works 100% for half of patients because there are 3 different mechanisms that can create the inflammation and Actemra only works for one of them. It has no effect on the actual disease process underlying it which continues and other drugs may work better for them

[Gilmor in reply to JuneWalker]

Thanks for sharing, I also started at 80 because optic symptoms. This time maybe 30/40 will suffice. It is not a straightforward journey anyway, thats the only thing for sure 😉, and best to you as well

[Sharitone]

I have been on pred for nearly 3 years; 2 years ago the dose was raised to 60mg for GCA/LVV. I was unable tog et below 15mg. So I had MTX for 8months which did not help or hurt me, though it took more than half my hair! and now I have had Actemra for 14 months. It has not had any side effects apart from feeling strange for a few minutes after the first 2 injections, and recently my neutrophils dropped so low I had to stop it for 2 weeks. It can cause liver problems. Neutrophils soon recovered though. Actemra has allowed me to get down to 1.5mg pred😀, though I seem to be rather stuck here. Hope this is useful.

[Grammy80]

I'm dictating this so I hope it is clear. I was just heading to bed when I saw this and had to relate my experience. 1st of all I have a lot of faith in my roommates I'll just who does not have much faith in MTX For the treatment of GCA. I lost partial sight loss three years ago And have been on a prednisone journey ever since with GCA. About 3 months after my diagnosis I started taking Actemra. For the 1st time I am in single digits with my pregnancy. Recently I had to stay in the hospital for asthma consequently receiving large doses of steroids intravenous. which at present has left my right eye a bit fuzzy....I hope that is it. At present I am taking 4 milligrams of prednisone each day and and an injection of actemra each week. Personally I think the Actemra is an excellent steroid sparing agent with no side effects.. I'm sharing my experience. I believe it was about one year ago I had to go backup to 40 and was at 15 mg A-day at the time. I have no problem increasing if necessary and am in no rush to get to 0. My primary concern always has been maintaining my vision and my right eye. My very best to you💕

[PMRpro Ambassador in reply to Grammy80]

Now now - autocorrect will have us believe you have achieved a miracle Now that could raise some money ...

[Rachmaninov2 in reply to PMRpro]

Positively humorous. I had to chuckle. 🤭

[Grammy80 in reply to PMRpro]

A miracle indeed since all 'plumbing' was removed when I was 32....to say nothing of the other component. I SHOULD NEVER DICTATE, ESPECIALLY WITHOUT GLASSES!!!

Sorry, folks, but was the gist of it clear? I love everyone else's babies!!!🙄🙄💞

[DorsetLady PMRGCAuk volunteer in reply to Grammy80]

Gave us a smile 😊

[Rachmaninov2 in reply to Grammy80]

In truth I had more than a chuckle.😂

[Seacat30 in reply to Grammy80]

Congratulations! Wonder whether it will be a boy or a girl? Twins?

[Grammy80 in reply to Seacat30]

🤰🏼NOT!💞

[Gilmor in reply to Grammy80]

Thanks for sharing, and great that Actemra seems to work for you. And as you say if you have experienced problems with vision then it is of course your main concern.