Can Vasculitis affect your eyes. I have RA, Sjrogrens, and also Vasculitis. When I have a Vasculitis flare-up, my eyes flare-up too.

[L1zzy]

I feel run down, even more tired than usual and I get something similar to blood blisters on my elbows, finger joints and knuckles. My eyes become extremely bloodshot and inflamed, despite regular use of prescribed drops and gels. Is this a coincidence or does anyone else experience this?

[PatriciaAnn]

Hi Lizzy

Yes a number of the vasculitis diseases can affect the eyes. Have you seen our "Vasculitis and the Eye" page on the V-UK website? vasculitis.org.uk/living-wi...

PatriciaAnn

[L1zzy in reply to PatriciaAnn]

Thank you, I shall check the page. I haven't been told very much at all about Vasculitis by my Rheumatologist except it is inflammation of the blood vessels. Although the problem with my eyes is Sjogrens, there does seem to be a link to Vasculitis.

[RareLily]

I also have higih Sjogrens antibodies and RA joint inflammation and damage. Always bloodshot eyes and recently having new issues... tiny clear "blisters" on the white area of both eyes, with no pain but one eye was starting to feel terribly scratchy as though something was in it (like an eyelash) causing irritation. I'm told this is mild episcleritis. As soon as I increased the Prednisone dose, that irritation suddenly cleared up.

[L1zzy in reply to RareLily]

Thanks for replying. Is there a test for Sjogrens? I was diagnosed by symptoms alone, which seem to be linked to Vasculitis flare-up. A temporary increase in Prednisilone certainly helped, but now I am back on my usual dose of 2.5mg symptoms have returned.

[PMRpro in reply to L1zzy]

Sjogrens and most vasculitides are due to an underlying autoimmune problem that makes your immune system attack your own body because it doesn't recognise it as "self". Which one you are told you have depends on the set of symptoms and signs they can measure in blood tests. There isn't any real test that says it's this one or that one and some symptoms are common to several labels and overlap. Almost all the treatments are aimed at managing the symptoms, so far there is very little available to cure the autoimmune process in any of them. Often the autoimmune disorder will go into remission on its own - but in many cases it is the medication that helps achieve that too by damping down the immune system.

[PatriciaAnn]

Hi RareLily

I think you are referring to Ro anbd La antibodies. Sjogren's is known as a secondary vasculitis and as such, unfortunately, has never found its way onto our website or Route Map. Mostly Sjogrens is cutaneous but patients do sometimes develop symptoms similar to ANCA associated vasculitis (eg GPA) or those associated with Lupus. In those cases treatment is as for those diseases. Hope that helps.

PatriciaAnn

[RareLily in reply to PatriciaAnn]

Yes right, I test positive for high sjogrens (anti-ro, anti-la) sometimes known as SSA SSB. Mine is systemic initially presenting with MS- like symptoms of numbness, balance problems, visual disturbances etc.... 2 decades later here I am with CNS vascultis all of a sudden. There are so many overlaps and unclear boundaries it's no wonder these autoimmune disease (s) are so puzzling to diagnose exactly. I believe medical professionals should stop making it a priority to label us into a specific box since symptoms erratically either progress, remain constant, spontaneously remit.... or morph totally into something different shedding more light on the fact many years later. Offspring of all one root perhaps... and so unfortunately the same standard "treatment" or lack there of BECAUSE they feel it improper to treat something if not fitting the requirements listed in their old dusty medical jounals.

[kath12341]

I had major problems with my eyes before diagnosis which resulted in many months of vision problems.steroid eye treatments etc which led to my diagnosis

[pinktiger53]

RA also can affect the eyes as well as vasculitis and of course Sjoregens. Does your specialist know about the' blood blisters' and eye thing?

[L1zzy]

Yeshe does, he diagnosed the blood blisters as being Vasculitis of the blood vessels, and I had previously been diagnosed with Sjrogrens. The last time I saw him, I had a flare up of Vasculitis on my skin/small joints, and my eyes were inflamed, swollen and bloodshot. He temporarily increased my dose of Prednisilone and the symptoms were better all round. Now I am back down to my normal dose the symptoms are back. I wasn't aware until referring to this sight Vasculitis affected the eyes. There is an obvious connection and it seems steriods are the only treatment. Thanks for replying.

[AndrewT]

Dear L1zzy,

I can't add much to what has been said by others, in the replies above, except yes and yes definitely, in answer to your questions. I too get red eyes, as an early warning of an impending 'flare'- I the increase the Prednisolone (I am trusted to do this 'on my own', as it were). I have to say that 2.5mg is not, at all, a high dose of prednisolone and I do wonder if it is even an effective 'maintenance' dose, I am on 6mg, the lowest I can go without causing a flare.

In my case the drug regime is a little different, to you, because I have had a kidney transplant-yes the damage was caused by vasculitis. I was, prior to my transplant, on azathioprine 150mg daily, along with prednisolone- along with other drugs. I am now on tacrolimus & prednisolone, again alongside other drugs, which appear to work well, so far anyway.

My advice, if you are unhappy with your diagnosis- or require further information- is to speak to your doctors/consultants, don't be afraid to be a bit bullish/assertive, if necessary (not rude mind!) Most doctors/consultants, in my experience anyway, do care very much, and will respond positively to you comments, if put in the right way/time that is. Bear in mind that vasculitis, and indeed auto-immune conditions generally, are extremely rare and not seen by many doctors, unless of cause, they work in this field- the average GP may not see any such cases in his/her entire time in practice.

I hope that all the comments above have been of some help, please do let us all know how you 'get on', will you?

Take care AndrewT

[L1zzy in reply to AndrewT]

I usually take 2.5mg of Prednisilone which was increased to 10mg for 2 weeks before gradually reducing back to 2.5mg. I wonder if 10mg was high enough for a flare-up. I am concerned about increasing the amount long-term.

[L1zzy]

Thanks for you help Andrew, I will speak to my Rheumatologist, especially now I am pretty sure the flare up is linked to Vasculitis. I have asked if I should increase the dose of Prednisilone whenever this happens but I was advised to see my GP in case I make an error. I doubt I will, and I generally tell my GP what works best for me anyway. Unfortunately I will have to wait two weeks for an appointment and by this time I will be in hospital getting surgery on both feet! Athough I expect I will be given a boost of steroids during the operation which might help. I do not see the Rheumatologist again until July... and the previous three appointments have been with someone different which is rather unsettling...

[AndrewT]

Dear L1zzy,

I don't really know quite what to suggest, to you, right now; maybe you can try to 'chivvy up' your doctors/consultants; right hands, and left hands, not knowing what the other is doing- and all that. Since they have advised you not to increase your prednisolone, without a 'say so', then perhaps you could ask for an appointment on these terms. A difficult one as you don't want/need to antagonise your doctors/consultants, but you do need some guidance. Can you not term a polite request, in these terms- it is possible that all your consultants simply don't know what the others are doing- left hand and right hands, and all that!

Anyway good luck, my best wishes are with you. Kind regards

AndrewT

[L1zzy]

Thanks for your help and concern everyone... I managed to get a cancellation, so have an appointment with a GP tomorrow.

[02061949]

Plaquinil can damage your eyes. My daughter needs to have regular checks of her retina to catch it quickly. Apparently cessation of the drug averts the problem but you then have to get something else to check the symptoms.