Does GCA ever go away??

[winebag]

New to forum. I have had GCA forover 4 years. I have permanent retna damage to left eye. I was off predisone for 7 mo. Still with headaches. Did biopsy 2 weeks ago- neg. Now put me on Dexamathasone. I am still having up and down headaches in temples and back of head. Inflamatory markers are not terrible. Will I ever get relief or am in it for life.??

[alvertta]

Great question...

[SheffieldJane]

Oh God. Don’t say that. I was diagnosed 7 months ago, fully confident that it seems to clear up more quickly than PMR, that I have had for over 4 years and seems to have gone.Headaches seem to be in the side effects of all the drugs they put me on, for raised blood pressure for instance. Do you have other symptoms? I am mostly troubled by fatigue and low level viral feelings I am on 10 mgs of Pred and Tocilizumab injections that my Rheumatologist had to make a case for.

What was your doctor’s rationale for Deamathasone?

My diagnosis was made by a specialist ultrasound scan where abnormalities in my armpit arteries were visible. I believe that it is more reliable than the biopsy ( they have to do it on the right artery otherwise there could be a false negative). So my diagnosis is actually GCA/ Large Cell Vasculitis. I am on a mission to find out more about it.

Sorry that all came out in a bit of a jumble.

[winebag in reply to SheffieldJane]

He thought my body was immune to predisone

[SheffieldJane in reply to winebag]

Have you never experienced relief with Pred at all?

[winebag in reply to SheffieldJane]

I live in Illinois, I had local rhumatologist for 3 yrs, up and down on predisone, Then I switched to a new doc in bigger city . She put me on Methyltrexate. and weaned me off predisone. Both docs thought headaches were unrelated. I recently got another opinion from Cleveland Clinic. He says definitely headaches are GCA .He suggested dexamethasone. I had such a BAD day yesterday with headache. I am so trying to get better. You all are more real than the doctors. I have a headache every day for all these years with no relief.

[DorsetLady PMRGCAuk volunteer]

I think it’s unusual to have GCA for life, as S/Jane says is seems more likely to go into remission than PMR.

Mine lasted nearly 6 years - probably 5.5 actually. 18 months undiagnosed, and then 4.5yrs on Pred, but think the last 6 months of that it had gone.

Sorry but can you give a bit more info about what has gone on -

when started originally,

what dose,

how you tapered

why you’ve been off meds

why doc thinks you’re immune to Pred, and finally where you live (north America I guess from timings and reference to prednisone not Prednisolone,

And as Jane asks - any relief.

[PMRpro Ambassador]

Please could you complete your profile with relevant information - including where you are. Since you say prednisone I assume you are in the USA - in which case, why is the doctor using dexamethasone, which has no record in GCA as far as I know, and not Actemra/tocilizumab which is the obvious answer for someone with difficulties with pred, whatever they are and is more easily available than in other countries.

Personally, I think you are probably not "resistant" to pred - pred only works if you are taking enough. You would also be "resistant" to dexamethasone if the dose is inadequate. However, most people I know who have had GCA and been able to get off pred have taken more like 5 years - 4 years is not unusual even if doctors claim 2 year durations for both GCA and PMR.

[Frewen1 in reply to PMRpro]

Hi Everyone... I’m disconcerted to see the suggestion of “ 5 years” for GCA to recede, especially as I’ve only had this for three months... and was told 18 months to two years. But I’d rather know the actualité...! I’ve also been told I wouldn’t be eligible for Tocilizumab as I’m getting on with Prednisolone, but I have side effects I had never been warned of, ( touched on briefly here once before) which are severely hampering my attempts to be as active and “normal “ as possible. Is the criteria for not getting on with Pred judged solely on whether it affects the inflammation markers? Sorry if I’m asking too simplistic questions.

[Devoid in reply to Frewen1]

Hi sorry to say this but if you have only had it 3 months I would suggest you shouldn’t be even trying to do normal things. You do need to exercise if you can but you also need to listen to your body and rest plenty especially when reducing.

[PMRpro Ambassador in reply to Frewen1]

The only place you are likely to get realistic representations of GCA/PMR and pred are here in the forum where we all walk the walk! I suggest you start a new thread with specific comment/questions and people will offer suggestions.

It isn't the inflammation markers - it is keeping the symptoms under wraps and that is the bottom line: symptoms ALWAYS trump blood tests. In the UK tcz MAY be offered if the patient is unable to reduce the pred or other medical problems arise because of it or if they have repeated relapses - but you are looking at much longer trials of pred than just 3 months,

You have a new normal - it is rare for anyone to get back to their old normal in the first year or so. Many pred effects can be managed or mitigated when you know how, but some must be tholed by many. It is about accepting you are where you are and it will be a while before you are out of this wood. It may be 2 years - it does happen but it is rare to get off pred in 2 years - but longer is far more likely. But after the first year or so you will look back and see how far you have come - I have been telling people that for over 10 years and I know they rarely believe me but many come back and admit I was right.

But to add to Devoid's comment - you have a serious systemic illness, it is not a common cold, it affects your entire body. Pred may reduce the symptoms but it doesn't do anything to the underlying autoimmune illness and that chugs away in the backgground attacking your body in a similar way to flu. You wouldn't exercise as normal with flu would you?

[Frewen1 in reply to PMRpro]

Blimey. Thanks so much. The thing is, I still have to work when I can (freelance, mostly from home) and the particular side effect I find insurmountable is the walking incontinence, which is entirely a separate thing from urge, or kegel exercises, but a law unto itself. I really want to explore this subject so shall take your advice and set up a new thread - when I mentioned it a few weeks ago there was instant response, but there appears to be no evidence or research of a connection between steroids and this specific ( overflow) problem within the Vasculitis /scientific online community. I’m not sporty - I just enjoy walking a couple of miles, but am hijacked daily. Wearing protection is obvious, but doesn’t stop the horrible sensation... much appreciate your comments however re the illness « chugging away in the background « - it’s easy to blame all ones strange sensations on drugs, not It.

[Devoid in reply to Frewen1]

Have you looked at your diet for bladder irritants, I have found drinking tea definitely makes for problems

[Frewen1 in reply to Devoid]

No, I drink herbal tea first thing, then decaf coffee, water, and one earl grey tea in afternoon. V healthy diet. It came on so suddenly and is quite overpowering, never had the problem before, began a month after the pred regime started. Am going to start up a new conversation, trying to get anecdotal evidence to take to my consultation...

[lindyloy]

Blimey, I was told 5yrs. ago that my gca. would take about 2yrs. to "burn itself out", that was Nov. 2015. and I didn't get a definite diagnosis for some time. Iv'e gone from 40gms. of Pred. at the beginning, to 1mg. at the moment alongside Tocilizumab (Leflunomide not having worked), I don't think I was given an adequate dose to begin with, but what do I know. I sincerely hope you do get free of it in 2yrs. best of luck.

[Frewen1 in reply to lindyloy]

Thanks for your response. I’m learning all the time from this forum how my expectations should be somewhat more realistic. And I’m going to start a new thread about my particular bugbear to ask for people’s experience. I wonder how you feel now you’re on only 1mg, . All best x

[lindyloy]

Hi, the trouble is, this disease has so many offshoots (in my case, numb feet, breathlessness, etc) and along the way so many tests,(3xPET/CTscans, ct/scans, bone marrow test, DEXAscan, aorta scan ) and so on, all necessary, that I get unsure of how I should feel. Is it a part of the disease, or arthritis which I had before, I don't feel great on 1mg. of Pred. but is that normal? We shall no doubt see in time, my sister, has pmr. and she has had to resume Pred. after coming off it on a taper, 15mg. no less, she is on cloud nine at the moment but who knows for how long. Sorry to sound gloomy, I am nearly always the exception, but never seem to prove the rule, best wishes.