I am due to have a temporal artery biopsy this upcoming week (still have to schedule it) to find out whether or not I have GCA or non-GCA temporal arteritis. I got a haircut today and shaved part of my head to show the part of my head/temple area where the artery pain is located (see image below). In the attached image there is a noticeable prominence in front of my right ear. I took this picture lying down on my bed to make the artery look more prominent due to increased blood flow. The prominent part of the artery is where the headache pain and tenderness is located.
At this point, because I know steroids are the only medication that helped the temple pain in the past, I am assuming I will be put on prednisone for a few months to years if necessary to stop the inflammatory response, even if the temporal artery biopsy is negative. For those that are close to finishing your treatment for temporal arteritis or have already finished it and are now in remission, do you have any permanent after effects from prednisone therapy or any persistent symptoms (headache) despite steroid treatment, which is the supposed "cure" for the illness? I want to know my long term prognosis since I am so young with this illness. Will I ever stop feeling so tired?
The members here can't really speak for you Devin - we're mostly old enough to be your mum (or dad, there are a few men)! However - there are quite a few people who have been through it all and have recovered although you will have to take my word for it because there aren't that many still on the forum or they are on other forums!
I know a few in their late 40s, early 50s who have recovered in a couple of years and are back at their normal jobs. There are a few in their 70s who have recovered and are off pred altogether and for a few years now.
You are young and fit and once you have the pain managed you will be able to get back to something like normal - but it will take some time and you may have to adjust your expectations and learn to manage things by pacing and resting as appropriate. Living with chronic illness is not easy at any age - but you are not alone in that and once the doctors have come to some conclusions you will be able to look for people living with chronic illness who have a lot more in common with you than we have. That isn't a dismissal of your concerns - it is a reality. Most of us don't want to go out on the town at night, or participate in sports which I'm sure at present you don't feel like doing. But there are people on one or other of the forums who were marathon runners, had PMR (which is often more disabling than GCA) and within a year or so were back to 5km runs, or cyclists riding 200km per week and are back to nearly that level after a few months. Everyone is different, everyone's journey is different - but it will get much better than it is now. In a year you will look back and see how far you have come. It just doesn't feel like it now.
The steroid treatment isn't a "cure" by the way - it is a means of managing the symptoms until the underlying autoimmune disorder has burnt out and gone into remission. That may be a year or so or it may be much longer - no-one can say in advance which you will be. But GCA usually goes onto remission sooner than PMR. The Mayo clinic actually talks about "cure" for GCA, I assume they believe it is unusual enough to have a second episode to say that.
Pred doesn't do muscles and tendons a lot of good - but it is up to you to continue with a level of exercise you can manage. It doesn't matter what the level is at first - you will get to do more. But it is perfectly possible to get back to normal with patience. You may find a problem with weight gain when on pred - quite a few people have found cutting processed (junk) carbs has helped there - and I lost all the weight I had put on with pred by doing that, doing as much exercise as I could (not a lot to start with) and reducing the dose.
Simple answer to your opening question - yes, if treated correctly!
Although you know I'm going to add other comments. Hopefully a lot of your questions were addressed in your earlier post.
For your info Temporal Arteritis is GCA, it's usually called TA when the temporal artery is affected, GCA can, and does affect other arteries, large and small. GCA ( Giant Cell Arteritis) is when the certain cells of your blood vessels become inflamed and grow too large and have the effect of blocking the blood flow through those vessels. Your blood then cannot circulate correctly hence the pain and fatigue. I always relate it to someone who has blocked arteries and suffers from angina - very similar symptoms, but completely different cause.
When your temporal artery is swollen like yours, it suggests GCA is present, so a small part of the artery is taken and tested for those Giant cells. Steroids will not cure GCA, but they will control the inflammation until the GCA disappears of its own accord, nobody seems to be able to explain exactly when or why that happens, but it seems to!
I was diagnosed in April 2012, after 18 months of pain and fatigue, and only then after I had already lost the sight in one eye. I started at 80mg per day, now down to 3mg - hopefully nearing the end of my GCA journey., so you can see its not a quick fix, but you will get there eventually. Hopefully yours may be quicker as you are younger, and male, men seem to get over it more easily than women.
However, even when you are on steroids it's not all plain sailing, you will probably get side effects, but it is the only drug that works. And we are always here to help and support you.
There are people on this forum who have fully recovered, so hopefully they will be along with good news.
Please let us know how things go for you, and good luck with your biopsy.
Well, Devin, if you are eventually diagnosed with Temporal Arteritis, and that photo showing the swollen temporal artery is looking very suspicious, I hope it reassures you to hear that once I was diagnosed with PMR and GCA/Temporal Arteritis, and started on 40mg of Prednisolone, my head/jaw pain and vomiting disappeared within a few hours as if by magic. The PMR symptoms took longer to deal with, but I have now been in remission for more than three years. Good luck with the biopsy - you are young, you will do well.
Hello mate I know you wrote your post a while back but I’m going through exactly the same thing as you describe same temple bulge etc I’m 32 y.0 white male and have Crohn’s disease I’ve been getting headaches so severe they make me shake- jaw pain also temple pain, eyes keep swelling up and have a grey tinge to the white part. I recently got two sets of blood which both come back negative to GCA. I was wondering if the bloods could be wrong or maybe not show up this. It’s been coming and going for around two tears and started when I went out at Christmas on my works doo. Alcohol is over exaggerated now when I have anything at all to drink it sends me off to sleeep. No one can seem to find what’s wrong. Thanks for your time 👍🏻
I hope not but could this be Trigeminal Neuralgia, my husband had it and the pain was so severe it would make him shake. I am being treated for GCA and am now down to 12.5mg prednisone but am experiencing jaw pain, I can cope with it but am aware of it every time I eat. It started with the glands behind my ears hurting for about a month and now that has eased off and it seems to have travelled to my jaw, I just live in hopes that it will also subside.I can only wish you well, as with every body else who suffers from any long lasting pain. Good luck
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Worried I have Temporal Arteritis
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