Vasculitis and Sjogrens

[Sjogy]

Anyone out there suffer from Sjogrens's and vasculitis. I am on Methotrexate and Prednisone. I am in remission at the moment. Has anyone managed to come off medication and remain in remission.

[sammy412]

Sjogrens is degenerative condition, there is no cure although you will have good days or even weeks there will always be something. I am on hydroxychloroquine and find it has helped considerably with both the fatigue and my eyes, but i do get the odd day where i am so fatigued i can hardly move. I have found that it is more a case of managing it, as is my vasculitis. I know my vasculitis is caused by sitting or standing for long lengths of time, so i just try and not do that. With my sjogrens i try and not overdo things and rest when i think i have and basically listen to my body. HOpe this helps you a bit.

[leedsnel]

Hi Yes I have vasculitis with sjogrens it was my main symptom long before anything else developed. Mine is mainly when I fly and also if I am up overnight sitting a lot (used to work nights and appears to be because my BP drops at that times so blood returning from my legs has a harder time! I avoid sitting for long periods especiallly with my legs tucked back and tight socks but the best thing has been my hydroxychloroquine I have gone from scarlet burning legs several times a week to the odd bruise like spot

[milliewin]

Hi, I have Cerebral Vasculitis and Sjogrens. I have terrible trouble with dry eyes and I have tried many drops without success sadly. I am on Methotrexate, hydroxlychloroquine and having my first Rituximab on 14th Feb. So far nothing has helped and so next week I am having Botox eye injections to see if that will help? And yes the fatigue most of the time is unbearable especially as I do not sleep and still cant find anything to help me do that?

[Sjogy in reply to milliewin]

Thank you for your comments. Do you get side effects from the Methotrexate medications. It make s me feel very nauseous and gives me a headache.

[Sjogy]

Thank you for your comments. It's good to know I'm not on my own. I also have a lot of problems with my eyes and also have not found anything that really helps. I have terrible fatigue which is hard to describe to family and friends. Some days I just want to stay in bed and sleep but it makes no difference to the fatigue. I do try to keep positive but some days it is very hard.

[milliewin]

Hi yes Methotrexate does make me nauseous but my Folic acid was increased which helped and I take 4 tablets a week now, 20 mg, all on seperate days, seems to help? How much do you take? Keep positive and all the best. I will comment on the Botox next week and let you know if it helps? I think eye problems are very debilitating and add to the fatigue and actually a poor quality of life?

Sarah

[Galaxy2]

Hi

I too have both conditions, I take predisolone. mycophenolate and hydroxichloroquine. I have recently been advised by my neurologist to stay on steroids for the forseeable future to avoid another flare as the last affected my CNS although I do not have any signs of CNS vasculitis, but inflammation caused by sjogrens.

I would love to get to a time where I can come off all the medication but can't see it at least for the time being.

However although vasculitis started 5 years ago, I had had sjogrens for many years before and for many years did not need any medication at all, I really believe stress plays such a part for me in both diseases but avoiding it is another thing especially when illness itself brings its own challenges in so many ways.

I hope your remission phase lasts, it may be a case of staying on at least a lower dose rather than come off all medication to keep your symptoms at bay.

Jenny

[braindamage]

Hi

I have Wg and Sjogrens and was originally treated with Methatrexate and Pred. After a couple of months on methatrexate i was told to stop and change to Azathioprine - kidney probs apparentley.. I managed to get rid of Pred about a year ago and am loseing weight slowly. For Sjogrens, I was told to use a Sinus rince which sometimes helps. I had intended to mention it to my Rheumatologist next week to seek her opinion as it's slowly getting worse and beginning to affect my sight. The only problem is my local ENT unit! They're C**p!

[milliewin]

Hi I promised to comment on Botox that I was prescribed for my dry eyes? I have had two series of eye injections, very painful and left with bruised eyes and actually found that yes I can produce tears! The first injections were round the outside of my eyes (3 in total for each eye).

This seemed to have a positive effect after a couple of days which was great but sadly this didnt last so 2 weeks later I had another series of injections much closer to my eye, yes more bruises and tears! Again I was really pleased with a seemingly positive effect after a couple of days.

However again this hasnt lasted as they are now back to normal, very dry and painful? I am back at the clinic on Monday but what next I dont know I guess again I will be told yes your eyes are very dry!!! I KNOW, I dont have much faith in this treatment now as any relief for this problem?I have no idea what else will help as my eyes are a huge problem for me and I cant seem to find any relief? Has anyone else found a solution?