Vasculitis UK

Temporal arteritis

I am suspected of having temporal arteritis.

If anyone has it, would you mind telling me how long your headaches last? Is there anything you take (besides prednisone and other vasculitis drugs) that gives you some relief? Do you have episodes where you have these splitting headaches for days, then they stop, and then they resume? Did you have temporal biopsies and if they were not positive, what did the doctors say you had?

Thank you all for your insights.

5 Replies
oldestnewest

I had GCA and there is nothing other then pred that takes away the pain and other symptoms.

I have sent you a PM.

Reply

Hi,

I notice from your previous posts that you have Behcets syndrome. Headaches are very common in Behcets, has it been ruled out as a cause of the symptoms?

It's difficult to add more on the limited information you have given us. GCA has quite a few mimics and unfortunately prednisolone helps most auto immune/ inflammatory diseases so a response to prednisolone isn't diagnostic.

Reply

There is a dedicated PMRGCA forum

healthunlocked.com/pmrgcauk

Reply

Thank you. I appreciate your help. Robin

Reply

Thank you all for your responses. I definitely have systemic vasculitis, which has already damaged my left ear vestibular and auditory nerves, my left eye (lost 25% vision in left eye), left parietal lobe demylination. I've had uveitis, episcleritis, Meniere's disease, attacks in my gastrointestinal tract as well as Sjogrens. I have been suspected of Behcet's, Cogan's, Susac's and cerebral, but there is no one

definitive signifier. I have protein in my spinal fluid and other brain changes.

Sorry to be such a bore, but I have been told for years by internists and gps that I might have cerebral arteritis, due to the excruciating, throbbing pain in my temporal and trigimenal areas. I have not been biopsied. My rheumy thinks I might have it, along with a cutaneous form of vasculitis, but again, no biopsy as yet.

My interest in the temporal arteritis is that I can't find the info I want. That is, how long do the attacks last? Are there patterns to them, e.g. headache lasts for several hours until something palliates it, and then returns? Or, does the headache stop, recur in a week or when under stress? Does it only recur with certain triggers(my migraine triggers are barometric changes, loud noise, bright light and strong odors)?

I have multiple original headaches in which my whole head hurts, but the ones I wonder about are not migraines or else they're a different type of migraine.

I've been on all the immuno drugs, the latest being mercaptopurine. I was given an antibiotic at an ER for an infection and low and behold I was in critical condition in the hospital for 5 days with a potentially fatal drug reaction that caused all my organs to fail. Since then I've been on 5mg prednisone, but was bumped up to 20 two or three weeks ago for cerebral vasculitis-like symptoms. My original organ failure in March harmed my pancreas and I am now on insulin. But since I've been on the higher dose of pred, I have added a short-acting one.

I'm scheduled to go on mercaptopurine again (kind of nervous about it, having almost died) or cellcept, which I understand is harsh, increases blood sugar etc.

I've looked at all the sites and lots of research on this type of vasculitis.Anyway, I'd appreciate information for anyone who can suggest something.

I appreciate your time.

Reply

You may also like...