GCA symptoms

[cmToddy]

Hi. Any comments appreciated. I have had pmr for 2.5 years and found myself to be well and stable at 5mg if Pred. I reduced to 4.5mg and was ok. Following that after 6 weeks I thought I was ready to try 4 mg. It took 3 weeks before I started to feel unwell. I had some pain not unmanageable. I was tired beyond belief, dizzy and generally not good. Then about 5 weeks ago I started with pain in my jaw, headaches and stabbing pains behind my ears. I was told I had TMJ. Temporal Mandible Disorder and to take Ibroprofen which has helped. Then I started waking about 4am with really bad pain in same areas but headaches were terrible. A few days ago I woke up with pain at the back of my eyes. I could not move my eye ball left to right or up and down it was so painful. I was referred urgently to hospital. I say the Optamologist yesterday who told me no sign of GCA and that I had dry eyes. My bloods on Friday were 26 Crp and 8 Esr. Apparently, I have not got GCA but I know I have the symptoms. Even combing my hair is painful. Any advice or comments would be appreciated.

[PMRpro Ambassador]

It would be very clever of anyone to look at your eyes and say 100% that you aren't having a flare of GCA. All the ophthalmologist can see is where the optic nerve joins the retina (the optic disc) - if there has been longer term impairment of blood flow to the optic nerve at the back of the brain, in the occipital region, then it is likely to show up as enlargement and paling of the optic disc. However, if the blood supply is only slightly reduced or has recently been affect the changes aren't immediate and may not be apparent.

eyewiki.aao.org/Arteritic_A...

Over and above that, the GCA may well be in another area of the head and its blood supply and not directly affecting the optic nerve. It is the same as the temporal artery biopsy - all these things depend on exactly where the inflammation is.

[cmToddy in reply to PMRpro]

Thank you for the response. Could it be GCA without optical issue?

[DorsetLady PMRGCAuk volunteer in reply to cmToddy]

Can be -there is no specific timescale when eye are involved -if they are at all. There are a lot of small arteries in the head -any of them can be affected -or not. GCA cells are not uniform. But sight is what most are concerned about.

[PMRpro Ambassador in reply to cmToddy]

Yes. About 30-50 % will lose vision - and by no means all patients with GCA present with visual symptoms. And given so-called "typical" symptoms probably occur in under half of patients who go to a doctor.

"In a cohort of 204 cases of GCA (mean age 76.0 ± 8.2 years, 80% female), visual changes from GCA were observed in 47 patients (23%), 4.4% suffered complete vision loss. A higher proportion of patients with visual manifestations reported jaw claudication than patients without visual changes (55% versus 38%, p=0.04). Over a period of 55 years, we observed a significant decline in the incidence of visual symptoms due to GCA. There was a lower incidence of ischemic optic neuropathy in the 1980–2004 cohort vs 1950–1979 (6% vs 15%, p=0.03). Patients diagnosed in later decades were more likely to recover from visual symptoms (HR, 95% CI: 1.34 (1.06–1.71). Chances of recovery were poor in patients with anterior ischemic optic neuropathy or complete vision loss."

[jinasc]

Today I would be in A&E and asking to see the Consultant in charge of A&E. I would not be fobbed off either. Suspected GCA should be treated as a medical emergency. Your sight is precious.

[cmToddy in reply to jinasc]

Thank you so much for your response

[DorsetLady PMRGCAuk volunteer]

Needs checking….sounds too much like GCA not to be taken more seriously. It may not be, but I would want further investigation.

The initial dizziness, fatigue and generally feeling unwell could be attributed to adrenals, but the rest is very GCA-like.

Please keep us informed.

[cmToddy in reply to DorsetLady]

Thank you for your prompt response

[Skysey]

I would definitely return to hospital to get a second opinion on your symptoms. It is not worth taking the risk.

[Sharitone]

I echo everyone else. Did they really say it cannot be GCA just because your vision was not impaired? I was diagnosed with GCA/LVV without any vision problems. Do painkillers work for the headaches? If not, that might be a clue.

[cmToddy in reply to Sharitone]

Sharitone. Saw Rheumatologist yesterday. He acknowledge absence on tests may not mean anything and that you can have Gca. He put my dose to 60 mg and I am having the biopsy in a couple of weeks. In answer to your question, yes the Ibuprofen is making a lot of difference and helps a lot. Good luck!

[DorsetLady PMRGCAuk volunteer in reply to cmToddy]

Well at least he is taking it seriously re possible GCA..but high doses of Pred make make the biopsy less likely to be positive,. It’s a bit hit & miss at the best of times! But as said before because Ibruprofen is helping that muddies the waters in respect of GCA.

[cmToddy in reply to DorsetLady]

Not easy is it lovely Dorset Lady

[DorsetLady PMRGCAuk volunteer in reply to cmToddy]

Nope sure isn't!🌺

[Sharitone in reply to cmToddy]

Hope the 60mg does something for you!

[cmToddy in reply to Sharitone]

Thank you Sharitone