Temporal arthritis / stroke

[30048]

Yesterday I had a follow up MRI to make sure that the brain tumor that was removed in 2007 had not returned. It was a menengioma and benign . The neuro surgeon who is the head man at the University of Southern California explained something to me that none of my many rheumatologist had not bothered to mention. He said that arteritis is in the arteries around the brain and face but had no bearing on the brain at all. They do affect the optic nerve so the risk of blindness is there. I asked why they mention stroke as a possible danger then and his answer was that it is because most people are older that get it .HUH?? It was just one thing less to fret about as far as I was concerned and I may be the only worried but I just thought I would pass along that exchange.

[bert403]

Glad to hear your tumor has not returned...When I was diagnosed, the Dr's and also the many articles that I have read about GCA do say that it can result in heart attack, stroke or even aneurysm and we know blindness. It is very scary. I hear and read so many conflicting things, I don't know what to believe, but we need to be rid of this disease. Also GCA is kind of rare and I believe that most of the Dr's never even had a patient with GCA...so they are not familiar with this and probably don't know anymore than we do, they just adjust the Prednisone...and hope they get it right...

[Celtic PMRGCAuk volunteer]

It's good to hear that you are being well monitored following your tumour some years ago and even better to hear that the MRI has shown a good result.

Your neuro surgeon is probably on the right track in saying that most people who suffer strokes are older, in that about two-thirds are over 60.

The following might help to explain the stroke risk related to GCA:

In the case of a thrombotic stroke a thrombus (blood clot) usually forms around atherosclerotic plaques. Since blockage of the artery is gradual, onset of symptomatic thrombotic strokes is slower than that of a hemorrhagic stroke. A thrombus itself (even if it does not completely block the blood vessel) can lead to an embolic stroke if the thrombus breaks off and travels in the bloodstream, at which point it is called an "embolus."

Large vessel disease involves the common and internal carotid arteries and the vertebral artery. Diseases that may form thrombi in the large vessels include (in descending incidence): atherosclerosis, vasoconstriction (tightening of the artery), aortic, carotid or vertebral artery dissection, various inflammatory diseases of the blood vessel wall (Takayasu arteritis, giant cell arteritis, vasculitis), noninflammatory vasculopathy, Moyamoya disease and fibromuscular dysplasia.

So, whilst it is true that GCA/TA carries a small risk of stroke, fast intervention with treatment that reduces the inflammation and keeps it under control will greatly reduce this risk.

[Celestee in reply to Celtic]

I had a stroke at 52 before I found out all pains /hbp/ low potassium/high inflammation was from PMR

[Celtic PMRGCAuk volunteer in reply to Celestee]

Celestee, it sounds as though you were suffering without a diagnosis for some time - I know from experience how wretched that is. I hope you've made a good recovery from the stroke. It's surprising how many young people are suffering strokes - my friend had one at 45 and our son had one at 39, with absolutely no reason being found. I expect like him you take blood thinning medication, or, at the very least, aspirin.

[Celestee in reply to Celtic]

Yes i had been in pain for some time, years really and just explained it away.

never reallly adressed it until one day my eye went wonkie and drooped. I was still ignorant and went a week before I seen the Dr.

From that visit to now I have aspirin, cholesterol rx, 2 high blood pressure

then when the pain didnt subside they investigated further with more blood work and determined PMr by the high sed rates and always low potassium.

I am regularly in the lab for blood level check, take potassium and vitamin D supplements, eat NO salt and less sugar and processed foods.

excersize more even though I can bearly power through my 20 min.

I feel if I strenghten my muscles it will be less work for my heart,

Its hard everyday. Im am exhausted everyday. But if this is the life then I will adjust to make it as comfortable as possible.

warmth is good.

The prednisone is a blessing and a curse with the side effects. and the weight gain Oh My Goodness.

Im going to power through this. I have valid reasons to just lay on the couch and just relax but feel relieved once I finish my daily housework and workout.

thanks for this site and the input of everyone

[Chihuahua1 in reply to Celestee]

I know how difficult it is to slow down,but if you don't want to feel totally drained very day then slow down you must. PMR has this nasty little trick up its sleeve. You start to feel better after starting the meds so you start doing more. However the more you do the more you are risking doing too much. If you do just a little more than your body wants to cope with you will wake up the following day in absolute agony and feeling as if you accidentally missed the previous day's meds. If you don't wish to feel constantly exhausted and in pain you need to learn to pace yourself. Rest frequently and do things in smaller chunks. Unfortunately "powering through" is not considered the way to go. The more you push the more PMR will push back. It is the nature of the beast. It is the same for many of these autoimmune responses

[30048 in reply to Chihuahua1]

thank you for that. I know it.... but having always been a "power through "type of person....I have really had a hard time doing it.. It is good to be reminded.

[Chihuahua1 in reply to 30048]

I hear you and I'm the same. It was a hard lesson to learn that you can't get away with it any more. I still give it a go every so often, although this flare-up has caused me some real issues and it looks like my meds may have to be increased as the attack is not yet controlled. We will get there eventually

[Celestee in reply to Chihuahua1]

I power through (complete) my tredmill time. Actually feel energized after. It's the chores like mopping and scrubbing the tub that are more exhausting. I do space those out. It just is crazy how i have been this way for so long and thought it was normal ageing or because I was not doing enough that I needed to do more to get used to the new routine. There was a reason for my pain and exhaustion and shortness of breath.

The potassium and fresh fruit is helpful when I feel drained.

a warm shower is the best.

and sometimes my eye is in so much pain 1 mg of Pred relieves it.

thanks again for the advice and support

[PMRpro Ambassador]

Doesn't change the fact that a fairly recent retrospective review established that patients with a history of GCA have a 3 times higher rate of stroke than other populations - even corrected for age bias. One rheumy said to me "But it is still a low risk..." and my response was also "HUH?" The age group has a risk of stroke for all sorts of reason - GCA increases that risk.

Thrombotic stroke is due to a clot from somewhere else in the body reaching the brain without being caught somewhere else, causing a DVT in the legs or arms or PE in the lungs. It has nothing to do with whether the vasculitis is in the brain. I'm at increased risk of stroke because of atrial fibrillation - nothing to do with the GCA (other than the autoimmune disorder probably damaged the electrical cells in the heart). But it is a higher risk than for someone without a/f.

[Hidden in reply to PMRpro]

"I'm at increased risk of stroke because of atrial fibrillation - nothing to do with the GCA (other than the autoimmune disorder probably damaged the electrical cells in the heart). But it is a higher risk than for someone without a/f."

PMRpro

I'm sorry to hear that you have AF. My heart started to play up around the same time when I had strokes. I believe rheumatic conditions and heart diseases are related. I have seen some articles. Knowing you are super well researched I'm sure you already know! Have a nice weekend and take care.

[Hidden]

30048 Congrats for the negative results on MRI. Thank you for sharing.

Lots of people with systemic autoimmune conditions do get strokes at much younger age than 50/60 - 30s/ 40s. When I had strokes, I was 47. My Dad and older sister died of cerebro-vascular events. GCA probably hit people who are much younger but you don't get diagnosed easily as previous threads had suggested. One of my GP tells me that this is still considered as a relatively "rare" condition.

[30048 in reply to Hidden]

Thanks to everyone for your replies. It sure clears up my questions. It goes back to the point that doctors are so specialized that they often only see their particular field (if you are a hammer , you only see the nail). He just deals with the brain....BUT if you ever need a good surgeon....he is IT.