GCA after virus? At a loss!

[DK875]

Hi I'm new here and at a loss with my GP. I had a viral infection back in May and ever since have been getting one problem after another. I've developed neck, jaw and spine pain along with headaches. I also get palpitations and pains in the front of my neck. These have all developed since I had the virus, before this I was a very active, sporty 29 year old! I now struggle to go out for a run as I'm exhausted constantly. I have one inflammation test for temporal arteritis but it was low and they ignored any further tests as I'm "the wrong age". If anyone has any advice or anything I should be asking to be tested for, all help accepted!

[markbenjamin57]

Hello DK875

Thanks for your post here.

I'm not an medical expert but I suspect that if you're aged (only!) 29-ish, you're way outside of the typical range for the onset of either GCA (Temporal Arteritis) or PMR (Polymyalgia Rheumatica) symptoms - it's usually between about age 50 and 70+ if I'm correct.

That said, the symptoms you describe sound a bit worrying and I suggest that you push, push, PUSH your GP for further investigations if you aren't getting any satisfactory answers currently. Sadly, and as many of us here know, some GPs aren't always 'on the ball' in investigating their patients' presenting symptoms thoroughly enough - and some need a more assertive approach. From personal experience (and at whatever age!), viral infections can trigger a host of other, quite serious 'nasties' health-wise, so better safe than sorry.

No doubt you'll soon get some responses and advice from the trusted experts here. It will be good to follow your progress whatever the outcome - PMR / GCA or (hopefully) otherwise.

Please keep us posted whatever the outcome - it helps this and other health communities make sense of people's health conditions and experiences, and join-up the dots.

Best wishes in the meantime

MB

[SheffieldJane]

Hi DK875,

You are a bit young for this horrible affliction, but I do understand the desperation when you don't get a diagnosis , even. Have you had tests for glandular fever, I believe it presents something like you describe?

In the meantime do all you can to build up your health and strength, become a proper health nut and avoid situations and people that stress you out. Post viral syndrome can be very nasty. I would be demanding a whole raft of blood tests. Good luck. Let us know how you get on.

[DK875 in reply to SheffieldJane]

Thank you, I've been tested for glandular fever and it was negative but I've not had any autoimmune tests done. I was just hoping to get some other advice before seeing the doctor next week. Will keep you updated

[sondya]

When I was about your age, I was diagnosed with Sjogren's Syndrome. It '. . . is a chronic, inflammatory, multi-system, auto-immune disorder that is progressive. This means those who have Sjögren’s have it for the rest of their lives and it may affect many parts of their bodies. Auto-immune refers to a process whereby the cells that are usually directed to fighting infections are actually attacking our own cells, creating inflammation and damage to tissues, in particular the mucous membranes (moisture-producing tissues/glands). This damage is slowly progressive (gets worse with time)'.

Your doctor should consider this. I was in 'remission' for nearly 50 years - and then, whammo - along came GCA! Just gettin over it.

All the best. DK875.

sjogrensnewzealand.co.nz/re...

[DK875 in reply to sondya]

Thanks, will take a look into this too. I'm going to push to have more tests done and auto immune tests done. It's very frustrating being constantly unwell especially when I'm used to being so active

[sondya in reply to DK875]

Being unwell is a new concept with me too. Didn't see a doc for more than 20 years!

[PMRpro Ambassador]

It sounds as if you may have developed a post-viral autoimmune problem - and the direction your GP should be sending you is to rheumatology for a start. Autoimmune disorders are beyond the average GP and it's hard to diagnose autoimmune stuff even for experts.

Did you treat yourself as being ill while you had the viral infection? Viruses can be really nasty - and they shouldn't be ignored. Good luck with your quest for diagnosis and do tell us what transpired.

[DK875 in reply to PMRpro]

They didn't do much when I had the virus, my only symptoms were elevated liver enzymes and fatigue. I was off work for six weeks and just haven't been right since. They did give me three lots of antibiotics whilst I had the virus due to other infections. I half wondered if the antibiotics had caused GCA as had heard that was possible by GP keeps dismissing it as I'm "too young"

[markbenjamin57 in reply to DK875]

I suspect they're right about GCA (or, rather, not GCA, due to your age). All the same (and as PMRpro says), it doesn't mean that you don't have something else going on which is 'differently' serious. Main thing is, push for more tests and investigations until you have some conclusive result (see my other answer below..)

[PMRpro Ambassador in reply to DK875]

I had a similar episode when I was about your age - I was flat out and off work for several weeks, lost a load of weight. I also had raised liver enzymes - but didn't get to see a specialist until they were back to normal and I was slowly recovering! I was really unwell for about 6 months and then slowly improved but it was about 4 years before I could walk up the stairs without feeling ready to drop.

It is unlikely it is GCA - on age grounds - but there is an almost identical autoimmune disorder called Takayashu's arteritis which they WILL diagnose in younger patients. But no - antibiotics are very unlikely to cause GCA.

Your GP can dismiss GCA on the grounds of age - but you have something and it needs to be seen by a specialist.

[markbenjamin57]

DK875, I agree with PMRpro - she knows about these things.

Like you, I've always been very fit and athletic: a rugby player, runner, squash player etc. regularly into my 50's). But in my early 40's I went down with viral myocarditis - a nasty viral infection of the heart muscle which nearly killed me via a sudden Heart Attack (yes... it was a close-call).

I was incredibly fortunate to make a full recovery - especially since my family GP at the time hadn't picked-up on what was going on when I initially presented with quite sharp pains in my chest / ribs and he dismissed the symptoms as nothing more than normal 'aches and pains' (!).

I was eventually admitted as an emergency case and spent a week in Intensive Care before being discharged. Later, a cardiac angiogram revealed the cause - an un-diagnosed and treated (at the time) viral infection: but which had (again, incredibly fortunately) not done any permanent damage. Phew, back to my normal fitness later, but the uncertainty over my health was Hell at the time.

So, the moral of the story / my advice for you?

As PMRpro and the others here advise: in your context, and if your symptoms are so debilitating and persistent, do bang-hard on your GP's door for an urgent referral to a specialist - or maybe consider going privately if you have the resources? (it will save you a lot of time). Also, do some homework on your symptoms / possible causes of them if you have the time and energy?

Good luck and please do let us know the outcome. Fingers crossed for you...

MB

[DK875]

Thanks for all the replies, I've had a raft of blood tests taken today and will have results in about a week. Then see where it goes from there!

[DK875]

Still no further forward, generic blood tests all normal. Still having muscle spasms and fatigue, now seeing a private GP as getting nowhere with NHS