Hi All,
I was diagnosed with GCA last October. Presently down to 12.5 mg. prednisone and Actemra and feeling quite well. Is it reasonable to hope that one could recover without ever flaring again? Is it unreasonable to hope to go back to life as I once knew it? Or will I always have to be extra careful regarding physical and emotional stress, etc.? What are common experiences for those of you who were diagnosed with GCA more than a year ago or more?
Thank you!
see this from FAQs-
healthunlocked.com/pmrgcauk....
But just be aware many of the older posts relate to those who are through GCA, and didn’t receive Actemra [not authorised in UK until 2018 or thereabouts and only in a few cases and for a limited time].
Neither SnazzyD nor I were on Actemra, and are still about having come through GCA.
Have to say in my case, been in remission since 2016 and life has returned to normal. But you have to remember you are older, and hopefully wiser than before GCA struck, so it's a bit like comparing apples and pears. But life can certainly be good again. This is a post I wrote the year after..
Depends on you and your life. I haven’t flared since coming off Pred in 2020 but I consider myself in remission; I don’t assume it’ll never happen again. The same with the cancer I had in 2004. I don’t compare myself with others either because it doesn’t give me any idea what my body is going to do in the future. The ‘game’ afterwards is building confidence in one’s body but also being mindful of giving it what it needs, not what I want necessarily. Bodies change, we get older so the ‘rules’ change. I have been unable to go back to my old life at all, but something different. To be honest it wasn’t sustainable anyway.
What you have to remember is that you may get off pred altogether - but only half of GCA patients do. The other half continue to require a low dose on going. Neither pred nor Actemra cure GCA, they have no effect at all on the underlying autoimmune disorder that causes the inflammation that causes the symptoms.
There are at least 3 different mechanisms that may cause the inflammation in GCA, if you have only the one that Actemra works on, via a cytokine called IL-6, then you will get off pred altogether but there is an ongoing need for Actemra until that underlying disorder burns out and goes into remission. That may be in a couple of years, it may take longer.
In half of patients, the other 2 mechanisms are involved in creating inflammation and Actemra doesn't work for them, pred is required to deal with that inflammation. The same applies, you will need both Actemra and pred for as long as the underlying disorder is active, until it burns out and goes into remission. Again, the time scale is unknown.
Even without Actemra, most patients in the past have been able to taper their dose of pred and get off altogether and sail off into the sunset for the rest of their lives. It is very unusual for a GCA patient to need pred forever. It can take 2 years - it may take 5 years or more, or anything inbetween. Whether they are back to what they were before depends on several factors - how old they are and how long the GCA lasted being just two. If you are in your early 70s when you develop it and it lasts 5 years, you will be late 70s and with or without pred and GCA a lot can change in that time.
There are only a few people on the forum who are through and past the other side - because most who recover don't want to be reminded of a dark and difficult period of their lives but go away and live life. You probably have an easier journey ahead if you "only" have GCA - PMR is another beast with a whole different story. But it isn't all doom and gloom either way.
I was diagnosed and started treatment for GCA end of June ‘22. Had a couple of bumps on the road, what was described as a mini flare September 22 and an unexpected TIA/Afib episode Aug ‘23, Covid this New Year. I have slowly tapered to 3mg daily with no other flares to date -keeping fingers well crossed the journey continues positively. I’ve asked your Qs many times. Will I ever get back to how life was? I don’t know but I do know, despite the ups and downs things are much better. I do have to be ruled by my body and not what my head wants to do but at the moment things are good. I would say at least for half of each month they’re as normal. You just have to keep taking stock and look at how far you’ve come. I don’t think it’s a bad thing to take care of emotional and physical stress. Not doing so is probably what got many of us into this position in the first place!
Once I started Actemra I was able to get off prednisone in 7 months. I have now been on Actemra for 2 years 2 months. My life has been fairly normal now for the last2 years. However, I don’t consider myself to be in remission. I’m now on only half dosage of Actemra for the past 10 months. When I try to stop it altogether I often get slight headaches with no relief. Once I get my monthly half dose infusion I’m fine again.
My point is that yes, life can get better again. I have no long time issues of anything pred did to me, although, I really wasn’t on it that long. I still have painful arthritis and a slipped vertebrae in my back. Both were there before GCA.
I look forward to the day I can get off Actemra completely but it just isn’t now.
Thank you all so much for your answers; really helps to understand what to possibly expect in future days. Another question, if you have flared during a taper, have you had to go all the way back up to where you started on prednisone? Or will a smaller increase do the trick? Or does it depend on the symptoms?
Personally, I never flared… despite my husband’s passing during my GCA..
Increased dose …. depends on symptoms… obviously sight issues need a lot more Pred than something less major.
A lot of doctors do put their patients who flare back to the beginning but that is often not necessary. When it hapens because of overenthusiastic tapering or simply just overshooting the dose you need at present, often it is possible to get back on track without going back to the beginning. But that means acknowledging that you have overshot and going back to the previous dose immediately. And sometimes you need to add 5 or 10mg to the dose where you flared for a week or so to do a bit of a spring clean - but it is difficult to generalise - the situation at the time is important.
Thank you. So glad you didn’t flare even during your husband’s passing. You went through enough the first time!
That’s what I thought about dosing. I never had sight symptoms from GCA, only from the high dose of prednisone itself.
I think with my inauspicious start, all my doctors were very cautious about tapering. That plus the high doses for 2months at the beginning certainly sorted the GCA..
I maybe could have got off the Pred more quickly -but I’ll never know, so it doesn’t much matter.
I had both PMR and GCA (confirmed with biopsy). I am very lucky to be off both prenidsone (for almost 4 yrs) and Actemra (for almost 2 yrs) and have resumed by normal life and activities with no recurrances.
I started on 60m pred in 2020 but was able to taper off it in 5 month with Actemra. Rheumy had me take Actemra for almost 2 yrs, and taper off slowly. Last dose of Actemra was April 2022 and I have been symptom free since then.
So yes, my experience is that life can definitely return to normal. And I think the poster is right who said that many folks who are in remission have moved on and are no longer on this forum. So you might get more replies from folks who still have symptoms because the are ones who are feeling back to normal are no longer active here.
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