GCA or something else?

[Crisjord86]

Hello was wondering if anyone could help I’m a 32 year old male currently being treated for Crohn’s disease- I’ve tthe past two years on and off I’ve been suffering severe headaches - stiffness in the tops of my arms under my biceps -swollen red eyes -tight jaw and recently noticed a enlarged vein on my right sided temple that has never been there. My auntie of 63 has GCA aswel as Crohn’s disease. My doctor has done two sets of blood to rule out PMA and GCA and both results come back normal with no trace of inflammation. No one seems to be able to find what’s wrong and it’s really affecting my daily life. I can’t lie on either side of my head without feeling really uncomfortable

And I woke up the other morning 3am and my vision was flickering/flashing (scary) doctor says it could just be migraine but I’m not so sure.

Last year I was sent for mri scam and cat scans of my head and all come back negative . I’m at my Whitt’s ends trying to get someone to listen

Alchohol tends to help towards swelling of my eyes and an over exaggerated drunkenness aswel.

Thanks for your time 😁

[PMRpro Ambassador]

Up to 20% of PMR/GCA patients do NOT have raised blood markers and that tends to be more common in younger patients for some reason. While you are young to be considered for GCA it is not impossible and there are documented cases of men your age with GCA.

Where are you? You obviously need to see someone who will think out of the box - and they are a rare breed!

[Crisjord86 in reply to PMRpro]

I’m in Newcastle I’ve been to see at least 20 diffrent doctors over 60 doctors appointments and referrals to Ent department 9 week waiting lists. Unbelievable at times. It kinda went away or at least calmed down until Christmas and one sort of heavy drinking session all the symptoms are back. I forgot to add to the post my tongue feels irratted and dry and the time.

Thanks for your reply 😁

[PMRpro Ambassador in reply to Crisjord86]

At the Freeman? Have you seen any of their rheumies?

[Crisjord86 in reply to PMRpro]

I’m currently under dr Thompson because of the Crohn’s as I get tend to get stiffness in my joints when the Crohn’s is in flare and they wanted to rule out RA and with blood tests also come back negative but I still continue to get 12 month check ups. Also when all these symptoms appear my scalp tends to feel on fire to touch.

[PMRpro Ambassador in reply to Crisjord86]

There is a link between inflammatory bowel disease and PMR-type symptoms so that aspect doesn't surprise me.

As far as I know the ultrasound examination for GCA is available at the QE in Gateshead - not sure about the Freeman. It might be worth asking if there is any way you could see one of their rheumies who can do it. It is a simple test and as reliable as the temporal artery biopsy, if not more so.

However - there is a link between Crohns disease and ankylosing spondylitis

crohnscolitisfoundation.org...

ncbi.nlm.nih.gov/pmc/articl...

and ankylosing spondylitis can cause symptoms that are very similar to those of GCA because the neck problems it causes can restrict the blood supply to the head.

It may be worth asking him to consider the possibility.

[Crisjord86 in reply to PMRpro]

Thanks very much I’ll take these queries to him.

He did an mri of my spine and head at the same time and said there were no signs at all of A.S at that time.

I’m at the doctors again Wednesday I’m gonna see if she can send me to the qe and hopefully they can give me some answer

Thanks again I appreciate your time 👌🏻

[PMRpro Ambassador in reply to Crisjord86]

So he has considered AS? It sometimes doesn't show in the early stages or it may have been missed.

All I can say is keep plugging away - make it very clear that there is something not right and please will they find out what.

All the best and do keep in touch

[Crisjord86 in reply to PMRpro]

Yeah he sent me for one mri in 2016 and another in 2017 and he said there were no signs of A.S. He done the tests because on the right side of my lower spine I have what feel a like bulging joint but he said nothing showed up on the scans and it would be ok and he would see me in 12 months. I’ve been passed from pillow to post I got to the point of not even saying a word because no one was listening. I’ll keep in touch and let’s u know the outcome

Thanks agen