? On headache and gca
Posted , 7 users are following.
I have headaches due to sinuses and high sugars so I am confused on when to tell my rheumatoid doctor. She said if it is different or trouble with my jaw. On a post their was a gentleman who lost her vision before anyone could diagnose him. I am so worried I will miss the symptoms. My pmr is finally getting under control. Should I worry about the gca or not? Can someone help on what I should look for besides headaches?
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EileenH jill58546
Posted
The jaw pain they are concerned about is pain or tiring that occurs when chewing - that then goes away when you stop and starts again when you resume chewing or talking. None of the symptoms listed on the internet appears in every single person so it is difficult, even for doctors. The headaches are usually described as"like no other" but not everyone has them and they may be across the front of your head - or right at the back, what is called the occipital region. Tenderness on the scalp is another - it may be uncomfortable to comb or brush your hair, or even to lie on your pillow. Most people feel unwell, very flu-ey perhaps you could say.
You don't say what dose you are on or for how long - but as the rheumy says, any new or increasing pain that wasn't there at the highest dose you were at should be reported to your doctor for their consideration.
Only about 1 in 6 people with PMR go on to develop GCA and while it can happen at any time the majority are soon after the PMR appears as the PMR is a symptom of their GCA. The longer it goes on the less likely it is - but it can still happen.
The most feared effect is on the eyes - so if you develop blurry or double vision, especially in the morning or after a nap, or anything different, however fleeting, you should go to A&E for them to check you out. Loss of vision can be a sign of a TIA or stroke so shouldn't be ignored anyway.
But I'd say DON'T worry about GCA - just be aware that it is a possibilty. And if there is something don't ignore it!
jill58546 EileenH
Posted
Mrs_Hobbles jill58546
Posted
Everything about GCA is so worrysome, so I can fully understand your concerns. If you know the type of headaches you get with sinus and high sugars, then you'll be aware if you get a different type of headache, although sinus pain can be one sided as GCA pain can be. In my case my temple was very hot, throbbing and swollen, literally like your temple is infected, like an infected cut type hot and painful. The headache I had was on my right side, went literally half way across my forehead and all around my eye socket. My eye felt under pressure, and rather than being blurry, it felt as if there was something in front of it. My temple became desperately painful to touch, as was my scalp back to the top of my head. As Eileen said, brushing your hair is very painful as is lying on your pillow. I felt fluey, had no appetite and very fatigued. The jaw pain is a very sharp pain when you chew, to the point that you can't continue chewing and talking is difficult and at one point half my tongue went numb, that didn't last for very long and only happened once. The headache would also wake me from my sleep. I suspected I had GCA but was left by my rhumy while he went on holidays and in that time things got worse and worse ending up as described above. So if you suspect you have any, or all, of these symptoms, please don't wait for things to get worse. I don't want to frighten you but it's imperative you get treatment. There are probably other symptoms but this was my experience. So essentially very sore scalp, very painful when chewing and hot, throbbing headache and possibly eye under pressure. Fingers crossed you never experience any of it🤞
heather39822 Mrs_Hobbles
Posted
Once you have GCA, it has been diagnosed and treated with increased Pred dose, then what? Is it managed with the tapering PMR Pred dose or does it require additional treatment?
I think I was wrongly diagnosed with GCA following an extreme headache nearly two years ago. My doctor as a preventative measure immediately increased my Pred to 60mgs (without any confirmation of the GCA other than that headache). I decreased slowly (although battling now at 15mgs following a terrible June PMR flare), but no mention has ever been made by my GP or the physician of that GCA. Does GCA continue to present itself once it is "embedded" or does it just subside under the PMR Pred dose?
EileenH heather39822
Posted
PMR and GCA aren't "treated" with pred in the sense of "cured" - the pred manages the inflammation which reduces the swelling and so the symptoms. And like PMR there is a tapering programme to find the lowest dose that manages the symptoms until the cause of the GCA, a version of the same autoimmune disorder that causes PMR probably, burns out and goes into remission. Without confirmation it WAS GCA it is difficult to say how it might progress - but usually if there is no return of symptoms it is assumed the pred dose you are on is managing it
heather39822 EileenH
Posted
Mrs_Hobbles heather39822
Posted
Generally once its treated with high doses of pred, it settles down and you can reduce the dose in the same way you'd reduce with PMR. If you don't have any flares, which can usually happen in the first 18 months, you can keep reducing to a level that keeps the GCA, and if you have it, the PMR, at bay. Any severe headache while dealing with PMR would likely be dealth with as if you had GCA but if there's been no other symptoms or flares then there is no need to deal with it other than dealing with PMR!