Does anyone have any information on GCA and normal bloods

[Runrig01]

Hi as many of you know I am 48 and have Atypical PMR. Since March this year have increasing number of GCA symptoms: burning temples, jaw cramping. Tongue tingling. More recently I have developed a pulsatile tinnitus, which GP says suggests there is problem with the blood flow in the carotid artery. I Also now have pain along the line of my glasses and tender areas on my scalp. The good news is that my current Rheumy has at last accepted I have symptoms of temple arteritis and is arranging a biopsy, she is still skeptical because my bloods are normal. As I expect the biopsy to be negative after 10 months on steroids I would like to take evidence that GCA can occur with normal bloods to my next appointment. If anyone has any info that would help id be very greatful. I had asked for a referral to a new Rheumy as current one wasn't listening, but do not see her till end of November. Ism starting to think there is light at the end of the tunnel, and that these symptoms may be treated. Take care everyone, Runrig

[polkadotcom]

Hi Runrig, I know of some papers which appeared quite recently and which came to the conclusion that there are patients with GCA but without inflammation markers. I could have saved them the trouble, as in 13+ years I've only recently had any raised markers and they are for a quite different condition. I'll dig out the reference and PM you.

I agree a biopsy at this stage will probably be a waste of time but you never know, you might get lucky there!

[Runrig01 in reply to polkadotcom]

Thanks polkadotcom, I am at least a little more positive that it is all being taken seriously now. Will keep eye open for PM, meantime, take care

[Hidden]

Hi Runrig,

It might be worth your while looking at Takayasu arteritis. I don't know if you have any systemic symptoms of large vessel arteritis, neuropathic pain or limb claudication. It can affect mainly females up to the age of 50, and on a microscopic level is very similar to GCA. Like GCA you can have this condition without a rise in inflammatory markers.

There is a Prof Mason at Hammersmiths Hosp in London who is an expert in both conditions.

I am going to a multi disciplinary vasculitis clinic at the end of the month to try and get a definitive diagnosis for my PMR/GCA like symptoms. I e mailed one of the consultants involved in the clinic with a short synopsis of my symptoms/ treatment and they got back to me the next day saying that they would be pleased to offer a second opinion, my GP referred me.

Vasculitis UK have a really good helpline and can advise you on the nearest specialist. I think if you are atypical in any way then a multi disciplinary, specialist clinic is the way to go as

they have much more experience in making difficult diagnosis's.

I hope you can get something sorted out soon. I agree it's a waste of time doing a biopsy as 2 weeks of steroids can give you a false negative!

[rockyandzeus]

Hi Runrig,

Although I can not give you references to papers, I can tell you that i am one of those in the 5% of PMR patients without the labs to back up the diagnosis. My rheumy calls this atypical PMR.

I also had a wraparound pain on the left side of my head with tender scalp. After months on prednisone it has mostly gone away. It was scary though. From what I have heard/read, the biopsy for you will most likely be negative....which doesn't mean you don't have GCA, only that the section they looked at was negative.

I was impressed with Keyes response to your inquiry, I do not have access to that sort of clinics.

I wish you all the best. Remember if you have any loss of vision problems, go directly to emergency and insist that you be treated right away. Its your vision and your life.

Dorothy

[Runrig01]

Thanks for the responses. Keyes I am intrigued about the multi disciplinary vasculitis clinic and will certainly consider it if I do not have any joy following biopsy. I take it the clinic you are attending is in London? I plan to still have the biopsy I know the chance of a positive result is small, but it may be if I'm still having symptoms then something might show. Also if I am diagnosed Atypical GCA without a biopsy, I will spend my life listening to skeptical medics, as I have for the last 7 months. If there's a small chance it may show something then I'm all for it.

Rockyandzeus I am the same as you regards PMR, and was also diagnosed as Atypical PMR because of age and bloods. I currently take 8.5mgs which helps most of the muscle pain and stiffness, but does nothing for all the head symptoms.

Take care everyone, wishing you all a good weekend, Runrig x

[Hidden in reply to Runrig01]

Hi Runrig,

I live north of the border, but if I don't get anywhere with my apt at the end of the month then London will be my next port of call!

[Runrig01 in reply to Hidden]

I wish you the best of luck with your clinic at the end of the month. I am originally from Glasgow but live in the south east now. I would also be prepared to travel to London if I don't get answers soon. Take care and let me know how you get on, cheers from Runrig x

[SJes]

Hi runrig01, I seem to be in the same boat , I have all the symptoms of GCA and similar to your symptoms but all my tests have also come back negative, Biopsy , MRI, Pet Scan, Bloods etc. except for a borderline c-ANCA Blood, My present Rheumy was a bit sceptical that I had GCA, probably a rarer form of it. at the moment I am pushing for a Ultra sound test of my temporal Artery Area , This is a relatively new test and seems to be having good results but is limited availability and also dependent on the experience/skill of the person doing the test. I am also looking for a second opinion and I’m keen to go to a Vasculitis clinic. Just want to know what’s wrong with me so I can move on , Good Luck

[Runrig01 in reply to SJes]

Hi SJes, are you currently on high dose Pred for the symptoms? When you say you have all the symptoms, including the tongue? I have yet to meet someone with tongue claudication, although it is listed as a more unusual symptom. I just had a message on phone to go at short notice for biopsy but was out. They have warned me it will probably be short notice again. They expected me to travel 25 miles and park in 45 mins. You need 30 mins just yo park LOL.

[jinasc]

Keyes

There is no need to travel to London - you have PMR GCA Scotland (the first registered Charity in the UK) on hand and they know some good Rheumatologists and a couple of fast track hospitals. Google them.

[Hidden in reply to jinasc]

Hi Sambucca,

I have been in touch with PMR GCA Scotland and am under the care of a rheumatologist.

I was initially treated for GCA and had a TAB as well as IV methyl prednisolone but now I have no diagnosis apart from " an inflammatory disorder" and remain on pred plus methotrexate. I remain very symptomatic and a stone in weight lighter than normal as I can't eat properly due to ongoing jaw pain.

I work for the NHS, but have been unable to work for the past 5 months due to ongoing fatigue and pain.

With the greatest of respect I am prepared to travel wherever I need to get a definitive diagnosis. These conditions are so rare, especially when considered atypical ( I am 47) that it makes sense to visit one of the handful of truly specialist clinics in the UK.

[SJes]

Hi runrg01, Im on 16/17mg at the moment alternate days, as 16mg had me feel worse, Stiff/sore Jaw , Tinnitus, Tender head, Headaches. all down my Right side. As far as the biopsy is concerned, I wouldnt want to drive afterwards, I Wasnt in a fit state !!