Does anyone else have Sjogrens as secondary to vasulitis?

[lisa-ranyell]

I am waiting for official diagnosis but my GP thinks i have Sjogrens syndrome as i am suffering with dry gritty eyes, decreased salivary flow, dry skin, dry cough and have had enlarged lymph glands this year at various times. Does anybody else have experience of this? I have had WG for 5 years.

[PatriciaAnn]

Hi Lisa

I don't know much about Sjogrens apart from that Venus Williams was diagnosed with it this year. The gritty eyes and dry cough are symptoms which can be associated with WG but I don't know about the salivary flow or the enlarged lymph glands. Maybe it is the WG manifesting itself differently. I would have thought the opinion of your consultant might be needed.

If it is Sjogrens then have you visited the following site? sjogrens.org/

Love and best wishes PatriciaAnn

[lisa-ranyell Vasculitis UK Volunteer in reply to PatriciaAnn]

Thanks patricia i have visited this and various other sites and it seems that this can be a primary disease or secondary to other autoimmune such as lupus or RA. I was having rituximab therapy yesterday and mentioned it to consultant who came to see me, but he wasn't aware that it could come with vasculitis. I will have to wait until i see my own consultant at end of month as he is more of a WG specialist.

Best wishes and thanks for your reply

[John_Mills Volunteer]

I have a friend who has just been told she has Sjogrens syndrome but she also has RA. As far as understand Sjogrens is a syndrome but the WG is probably responsible for it. My friend tells me there is no cure for Sjogrens but it can be treated. As Pat says, I think talking to your consultant is the best thing to do, but I have been told it is better to treat Sjogrens sooner rather than later. Good luck..

Susan

[lisa-ranyell Vasculitis UK Volunteer]

Thanks for info Susan, currently trying to treat all symptoms separately. Artificial tears, extra fluoride toothpaste etc, and Rituximab is actually one of the treatments used so i'm way ahead there (although slightly worrying that i have developed it while on Rituximab!). Will just have to see what consultant says.

[John_Mills Volunteer]

Hi Lisa,

Sjogrens is yet another auto-immune disease. It is often found as a stand-alone illness affecting the watery mucous secreting glands - tear glands, salivary & others. In your case it is probably running parallel to the WG, not secondary, just as quite a few vasculitis patients suffer from thyroid problems - another A-I disease. Life's just not fair, is it! It may well be that the Ritux might stop the disease progressing but there may be only limited recovery from the damage to the secretory tissue that has been damaged. And it probably will not be immediate. Sorry not to be more encouraging. There are preparations that can help in coping with the symptoms and you can develop coping strategies - such as carrying one of those natty little bottles with a pull-push top that drinks sometimes come in - but with water in, not juice of course.

All the best

John

[leedsnel]

Hi I have primary sjogrens with no other auto immune diseases the presenting symptom was vasculitis which I had for about 4 years before diagnosis. I have been diagnosed 2 1/2 years now and on hydroxcoloquine for 2 years I am only just beginning to get dry eyes and mouth. I am tols that sjogrens can take 2 forms one only affects mucous membranes to eyes mouth etc and the other (which I have) affeacts all systems causing lung, kidney,gut and circulation problems as well as joint pains and muscle weakness hope this helps!

[dianamarie]

Hi..I have all the conditions you mentioned, and it took me over 9 months to get the Sjogren's under control! I recommend you immediately go to the store and buy some nighttime ointment for the eye, it generally comes in a small tube and contains mineral oil and petroleum, and it is so soothing to your eye when you put it on and then you close your eyes and it helps your eyes stay lubricated while you're sleeping... they sell it where the eye drops are sold, and also buy some lubricating drops, but not the ones in the bottle because they have preservatives, which can make it worse.. There are pkgs with single-use ampules, which is exactly what you need, and use that several times throughout the day to keep your eyes lubricated. Also you need to be drinking at LEAST half your bodyweight in ounces of water.. If you weigh 150 pounds, you should be drinking 75 ounces or more of water! You should be taking some kind of oil supplement, like fish oil, evening primrose oil, flaxseed, Omega 3. I also bought vitamins specifically for the eyes. My condition was so extreme the doctor said he's never seen anything like it, and it looked like my eyes had been sandblasted! It was incredibly painful as well. They gave me perscription drops called ALREX, which is a steroid drop, to be used 4 to 5 times a day. They also put me on prednisone for a month, which I guess helps shut down the process. I was not allowed to wear my contacts for 9 months, and they advised never wearing them again, but they accepted my wearing them to church once a week, lol

In my opinion there's a lot that you can do on your own for Sjogren's to improve the symptoms! These are the things that have worked for me and I hope you can take them into consideration and get some relief yourself!....also, f.y.i, everything I mentioned is not only helpful for Sjogren's, but literally any kind of autoimmune situation!

Best wishes, Blessings, DM

[dianamarie]

....oh and I forgot to mention, but you probably already learned by now, when you already have a condition such as vasculitis or Wagner's, or whatever, and then you have Sjogrens, they call it secondary Sjogren's, which some doctors don't like it being referred to that way. You should google Sjogren's there's plenty of information on the Internet to educate yourself!...and it also seems that some medications can bring it on, like chronic pain medications...you should enter your medications on the internet with the question ....'can it cause Sjogren's'.....or Sjogren's symptoms....it's amazing the things you can learn by googling it...