Hello again.
As some of you know, I'm currently awaiting the results of a temporal artery biopsy. My ophthalmologist feels that I don't have gca as my bloods have come back normal.
I've recently started with severe cramp in both legs and feet and spider veins below the ankles.
Has anyone else experienced anything like this?
My local rheumatology Dept has just informed me that they are no longer taking new referrals so I'm feeling a bit lost
Well apart from the fact 1 in 5 GCA patients have normal blood markers - or more accurately, the levels remain in normal range which isn't the same thing at all - why did the eye specialist order a TAB then?
I think it is not on for them to refuse to take a query GCA patient - that is a medical emergency. Does that hospital allow the dept of medicine to refuse to see a query heart attack patient?
Where in the UK are you? It would be helpful if you put that on your profile and a bit more about your history if you can.
I'm in Macclesfield. Been advised to go back to my GP and ask to be referred to the hospital in Stockport.
Ive been reading about large vessel GCA and wonder if it might be that??
You mean as opposed to cranial GCA (in the head)? I was diagnosed with PMR - but almost certainly had/have large vessel GCA. It can be very vague.
Yes. As I understand it, large vessel GCA can cause limb claudication. The severity is really something and it seems to be coming more frequently.
Or you could have peripheral arterial disease - which can be due to GCA damage. Have you been referred to the vascular lab? Usually run by vascular surgeons.
At the moment I haven't been referred at all.......
Immensely grateful for the support from this forum 😔
If you have leg caludication then your GO should be checking your ankle pressures (BP) and the ratio to the BP in your arms. It is very simple and should give them an idea of what they are looking at.
Good point. I've been tracking my bp myself and there seems to be a 10 to 15 point differential between right and left ........
That is significant and MAY be sign that what you have isn't GCA but possibly subclavian steal syndrome which is a rule out in a GCA diagnosis. Mention it.
Just wanted to give a very valuable input . I have a Subclavian Steal Syndrome AND GCA AND Polycythemia Vera . So be careful that the docs understand the situation well . I had a journey of one year before the docs figured I have ALL three....... I mean to poi t out that one does not rule out the other .
Crikey!
I'm having trouble getting them to admit I've got one.........
Need to tell the medical literature which quotes it as a differntial diagnosis since it can cause the same symptoms. It's obvious to me that you can have the lot - but apparently not always to medics. Which I never understand tbh!
I have been investigated for Polycythemia Vera as well - how are they related?
They are not known to be related. Or rather not proven to be related. However there are of course theories that PV in rare cases can trigger GCA - Not proven just hypotheses. In any case whether trio I have landed up with at the same time is a freak case in the first place. I just wished to point out that in case of rare diseases such as GCA, it is best to check EVERYTHING - MRI, PET scan, kidney function, liver function, cardiology ,ophthalmology ,Doppler scans for blood circulation - The works ! It pays off in that one has an accurate picture of how the GCA may be behaving within one's body. Often it is tiring to check everything but is better to do so always.
What is large vessel GCA?
Just read about the increase in spider veins that Linda3009 has had.
I have had such a massive increase in varicose veins and spider veins in my legs since being diagnosed.
Also have areas in my calves that feel odd when I walk and discovered a dent in my call on the side inner - not sure if it's related to my veins.
Large vessel vasculitis is when the large arteries in the trunk are affect, especially the aorta.
The spider veins are different and GCA only affects arteries, not veins, though it is said signs of inflammation can be found if you look long enough. The inflammation is in the elastic layer of the artery walls so it doesn't even affect all arteries equally.
Hi,
“My ophthalmologist feels that I don't have gca as my bloods have come back normal.”
Normal bloods don’t mean you don’t have GCA, as PMRpro says many patients never have raised markers, plus even if you did pre Pred, the steroids should have brought them down into “normal range” that’s what it’s designed to do. Unfortunately many doctors don’t seem to ‘get” that fact.
Dorset lady, I couldn't agree more.
I will leave it to the experts here regarding whether you may or may not have GCA and the 'types' involved but yes - leg cramps are referred to relatively ofcten by forum members including myself. I attributed these more to the Pred than anything else which affected my tendons - especially my achilles - the left in particular which was extraordinarily painful - especially after I injured it and kept me awake nights on end with continual cramping. This may not be your issue but is on the additional 'things' we don't want 'radar' for sure ...
I know we are all different. For me, taking magnesium in the afternoon, seems to have stopped my occasional nightly leg cramps. Perhaps it is worth a try for you.
I have red splotches on both feet. They go away with exercise, elevating my feet and warm water. The red splotches were biopsied at Mayo Clinic. They found nothing. There are two types of GCA. I have the full body version. And yes, leg cramps at night. Prednisone does not improve this, Actemra does. Also tendonitis, just Godawful in feet and hands, again, improved with Actemra. Trying Actemra two times a month, not working as well as four times a month. May have to go back to four times a month. Stopped because Actemra makes BP go up. Primary says she will manage bp., I need Actemra.
Others have posted this before, but here is a good link describing the two types of GCA.
academic.oup.com/rheumatolo...
Magnesium does not help tendonitis, just Actemra for me. A heating pad or hot water also helps. This disease sucks.
I get leg cramps many nights, I put it down to the Pred. I also have the thread veins on legs and ankles which my GP said was classic 'pooling' due to poor circulation in my legs. I take Mag Phos tablets which are supposed to help avoid cramps. PMR, the gift that just goes on giving!
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