Advice about possible GCA

[jacdo]

My husband who has secondary progressive MS, has had a headache every day for the last 25 days. On day 13 he had a telephone consultation with his GP who said that he wanted to see him in person (now that's a first!) He examined him and said he wanted blood tests sent off that day which was a Friday. On the following Monday morning the GP phoned saying that the blood tests were showing inflammation and he wanted us to go to the hospital straight away and said they would be expecting us.

After more blood tests and examinations by a dr and then a consultant, she decided that it was not typical of temporal arteritis and we were advised of all the red markers to look out for and sent home and to return the following week for review.

This Monday we returned to the hospital for more blood tests and saw the same consultant. She was worried as his CRP had increased from 49 to 63 in a week and his white blood cell count was slightly raised. After consideration she decided to refer him for an emergency MRI partly in case it was MS related.

He had his MRI today and we saw a dr afterwards with the results which did not show anything untoward, just MS lesions. She said that due to his age and symptoms it would not be temporal arteritis. I gave her rather a sharp retort on the age part since he is 58, and told her that I had PMR at 53! She has advised us to wait for an appointment with my husband's MS specialist which is in 2 weeks.

The original consultant we saw last week and again on Monday was tempted to give him pred but wanted to check the MRI first so the pred didn't cloud the issue. She also said that if the MRI didn't show anything, she may send him for a lumbar puncture.

I feel we have been fobbed off today and I am worried about leaving this another 2 weeks. His headache is a pressure right on the top of his head. He has no real scalp tenderness and nothing at his temples, no eye problems and no jaw pain. He does have a slight sore throat and keeps having to clear his throat. The back of his neck is slightly tender and he feels more comfortable when he drops his head as it is uncomfortable holding it up. Oh, and we found out today that his ESR has increased from 60 last week to 83.

Do you think this is just a throat infection with a bad headache or could it be GCA? I am going to contact his GP again for a telephone chat but would appreciate your thoughts in the meantime.

Thanks for listening.

[SheffieldJane]

It could be a throat infection. There are loads of unfamiliar feeling, bugs around at the moment. As long as you are alert for the key signs of GCA effecting the temples and eyes and the odd symptom of jaw Claudication.

You might want to have an eye health check in the meantime. There is some interesting information about eye checks in FAQs. I go to my well equipped optician every three months and have all kinds of checks, cataracts, glaucoma. Peripheral vision, large floaters, dry eye, back of the eye, the optic nerve. The optician plots my progress or otherwise on a set of slides, so we can spot areas of concern, like GCA. They charge £40.00. This is prompted by the danger to the eyesight in GCA. This while you wait for the MRI. Following mine I had a specialist ultrasound examination of my arteries where GCA/LVV was found but not in my temples. I had an scan of my Aorta as well which was functioning normally. I am not sure how MS fits in with GCA even though I had the one and my grandma the other. 58 is not too young for GCA but I am not sure if the two diseases share symptoms. I hope he is ok. Even the common cold makes CRP shoot up.

[jacdo in reply to SheffieldJane]

Thanks Jane, I did wonder if it was just a virus but it's gone on for so long. and then I read the GCA symptoms post! I hadn't thought of an eye health check but that's a really good idea. I'll see if I can book him in.

Thanks x

[Sophiestree]

I think you're right to keep pushing. I didn't have classic Temporal Arteritis, but LVV, so I had headaches, but could touch my head, wash my hair and brush it, but the pressure in my head was severe. I also had a sore throat, glands in my neck and a permanent fever. Many other symptoms which I won't list, and my ESR and CRP went up daily to triple figures. I was finally diagnosed by a CT PET. I think what I'm trying to say is, just because you don't tick the right boxes doesn't mean you don't have the condition. And pred would certainly answer that.

If I had a pound for every person who thought I had either covid or long covid I could happily retire.

I was a but older at 62 , and to be honest, thought I had Hodgkins like my father, due to the pain in my glands down my neck and going under my arm pit.

Your husband has so much to deal with already he really needs to get this sorted. Really feel for you both.

[jacdo in reply to Sophiestree]

Thanks for sharing your experience Sophiestree. We have now got an eye test and health scan booked for him this afternoon. I suppose it is just a matter of eliminating things and hopefully we will get somewhere in the end. I made him do a few lateral flow tests even though he doesn't have a fever so I know what you mean about Covid!

Thanks x

[Hidden in reply to jacdo]

I imagine meningitis is on her mind for a possible lumbar puncture to be undertaken. I had bacterial meningitis many years ago losing the sight in my left eye. I didn't have all the classic symptoms either. On diagnosis for PMR my inflammation marker was 515. Very happy that my last blood test was: ESR 2.9 and CRP 2. Having another blood test on Monday to check again, and also looking at my kidney function that isn't right t at the moment. I also didn't have all the symptoms for GCA. I experienced tender head, but not unbearable, jaw claudication and a different sort of headache. You are both relatively young, so this should get sorted asap.

Wishing you good luck

Anne

[jacdo in reply to Hidden]

Thanks Anne, we're just waiting for an appointment with the GP so hopefully we will find an answer soon.

[brambles22]

The length of time of the headache was similiar to mine. In my experience it didn't go away, it was persistent- it might ease off for a few minutes but it would soon come back, often sharp shooting pains around the temples. I had scalp tenderness, eg it was unpleasant having a shower with the water spraying on my head. My inflamation levels were much higher than that. I was put on a very high dose of steroids and the headache went away immediatly. I had severe sweats before the steroids, they eased off after a while.Now on 2mg steroids as day after 15 months. Now just suffering from extreme tiredness and brain fog.

[jacdo in reply to brambles22]

Thanks for sharing your experience.

[Hidden in reply to jacdo]

Do hope so.....keep on his/her tail though.