Do all signs of GCA go away after years of pred? - PMRGCAuk

PMRGCAuk

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Do all signs of GCA go away after years of pred?

Jan_Noack
Jan_Noack

I was wondering if one had GCA and then was treated with pred for say 5 years reducing as we do, would it be possible for all signs of GCA in the blood vessel in the brain to completely disappear and just a few mild tender symptoms to touch of scalp and slight numbness (if that is a symptom) to remain? I guess I'm asking do the blood vessels fully recover?

5 Replies
DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

We always say GCA has gone into remission (not gone, gone) , and for most people that is a permanent situation..but obviously not always.

If the underlying illness is dormant there is no reason why the blood vessels should still be affected. It’s the walls of the vessels that are affected by the exponential growth of the cells, and once that stops happening they “should” return to normal.

Not sure how much study there has been into whether that happens or not. Will have a search later.

One thing I would say (from personal experience) is that if the optic nerve is permanently damaged due to lack of blood flowing through ophthalmic artery (pre Pred) then that does not repair itself...so no return of sight.

Are you asking because you still have issues? If so, then please get it checked.

Jan_Noack
Jan_Noack in reply to DorsetLady

thanks, No I was merely curious. I realise that any damage from any blockage will at least partly remain and sadly, with the optic nerve permanently remain. I haven't had GCA though I thought I may have had symptoms but luckily no loss of sight (although had some temporarily back in 2006-2016). I have been told that I do not have it and just wondered if that means I never had it. I also luckily have no arteritis anywhere in my chest, neck or brain that they can find. I am very lost with neurology and I doubt I will ever get even partly on top of it. What I have been diagnosed with is atypical moyamoya. I do not know if this is somehow tied in with finally developing PMR but suspect it is. I also think I may have SREAT or HE (Hashimoto's encephalitis)..and have thought so since it was first talked about back in around 2005 ish? I'm finally going to see someone I found who treats this in march I hope! The strange thing is moyamoya typically is a narrowing of blood vessels at the back of the brain the IC or middle carotid artery MCA facebook.com/groups/2359269... . With me, it is the left MCA is narrowed and now completely blocked off and blood vessels (tiny ones like puffs of smoked) have worked their way from the side of my head from that superficial temporal artery (which is good I have been told) sideways from the back part into my brain giving some partial perfusion and around the blockage where the middle MCA branches off on the LHS. the right side is only narrowed a little luckily so perfusion considered OK on that side and blood flow direction is normal. I still have a few symptoms but the pred stopped me dropping things and falling over and blanking out (well as much or as long) and helped the seizure-like? events. Just strange how GCA is a narrowing in an entirely different artery (one which they would use the middle and back part of for a brain op if I have one..at least I think it's the same artery?? I really am confused here but my outer artery is good I was told) and moyamoya is a narrowing on the back of the brain internal carotid artery..which I THINK is the same one as the MCA (middle carotid artery)... really confusing and surprisingly I have had many symptoms the same as GCA which have gradually lifted with the pred (or mostly lifted)... Hope this is understandable. I used to be concerned that if I did have a GCA test(after I found out about moyamoya in 2018) that I would not be able to have the operation by a neurosurgeon who finally started to explain things to me told me the front part used for the GCA test is not the part used for the op... symptoms mostly gone for now :) but strange about the brain and this narrowing and blockages. They Can't tell , even with a cerebral angiogram and MRa's and Ct scans with contrast if mine was a clot caught in the blockage or just the narrowing to a total blockage or even plaque I guess?. Sorry for the long explanation..and it has nothing to do with PMR. It starts in childhood or at least usually in 20's or 30's..which is when mine started although very small symptoms possibly in childhood... and then PMR later on life and finally a kinda atypical moyamoya diagnosis..or at least they can now see the brain left MCA blockage and blood vessels. I haven't heard of PMR going with moyamoya but most are not as old (at least on the forums). I guess there is narrowing in many different blood vessels thru the body. So luckily I still have my vision and I do not have GCA.

edited to add: I guess I am just trying to confirm with myself that the pred may have fixed up and made any possible (but cannot be seen ) GCA style blockages better again in that blood vessels if it is even used in a brain op. I think it looks good.. just wondered if the pred had helped that or if it had always been good. I wish I had been given long dose pred earlier. I'd been prescribed it by a german GP who visited Sydney occasionally I went to a few times and it always helped! Earlier it may have prevented the damage ..maybe!! They don't seem to usually treat moyamoya with prednisone which is strange...just with aspirin, loads of water and sometimes statins. I do know my brain has become better with it..although I have had all the dreadful pred side effects as well and sometimes I have no idea if the pred is helping or causing my symptoms. Over the worst now :)

PMRpro
PMRproAmbassador in reply to Jan_Noack

To some extent it is like we keep saying PMR isn't the disease - it is the manifestation of an underlying condition. The symptoms of GCA can be caused by a range of disorders that result in a reduction in blood flow to various areas of the body - in the case of cranial GCA it is the development of giant cells in the elastic layer of artery walls which lead to the lumen being squashed - like any pipe, that makes it more likely it will get blocked by a clot floating through the blood system because there just isn't enough room. That causes a TIA or a full stroke - or it may just reduce the blood flow and not stop it entirely. But reduced blood flow can happen because of narrowing or blockages further upstream too - the temporal artery is a branch from the carotid and as these branches get further away from the heart their diameter gets smaller and smaller.

If it is just a reduction in flow that gets slowly worse,what is called a collateral system develops, new blood vessels develop to bypass the traffic jam and supply the tissues the other side - like using back lanes to avoid that accident on the main road. That's what has happened in your moyamoya. When such a blockage happens suddenly there isn't time for this collateral blood flow to form and the downstream cells are deprived of oxygen and die leading to effects of stroke or GCA (which is just very specific form of stroke).

PMR is unlikely to happen alongside moyamoya because there the symptoms are due to damage in the brain leading to poor motor control. PMR is due to inflammation in the rest of the body and possibly poor blood flow to muscles.

PMRpro
PMRproAmbassador

They should recover once the underlying autoimmune disorder causing the inflammation has died out - tissue cells don't last forever and are replaced every so often, the timescale varies depending on the type of cell and other factors.

I was told by my neurophysiologist and neurologist that my problem nerve (not cranial) is trying to heal itself and the steroids would help that by improving blood flow. It was even trying to heal itself before steroids apparently.

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