[OrlandoJohn]

Hi, my name, as you can tell from my handle, is John... my wife Allison has primary sjogren's with CNS involvement. Her Doc at Johns Hopkins has said that she is part of a subset of sjogren's patients whose disease mimics lupus. I have found sjogrensworld.com very helpful in finding out more about her disease. She is about to begin treatment with immunosuppressants though and there seems to be more posts regarding such on this site than there.

She is 43, had always complained of minor aches and pains and had blocked parotid glands for a couple of years, but still managed to hit the YMCA 4+ times per week. She was diagnosed this past summer with primary ss following a trip to the ER for an unrelated event. She began plaquenil and evoxac in late August and seemed to be doing fine, though we did notice that it seemed the plaquenil was causing photo sensitivity. In mid October after a couple of hours in the sun with our daughter, she came in, had dinner and then had what has been since determined to be a focal seizure and stroke.

Since then our lives have been filled with neuro's saying it's rheumatological and rheumy's saying it's neurological. Fortunately we have become patients of Dr. Birnbaum and he has been a god-send.

I wonder if there is anyone else out there like her that posts to this board... and if anyone can share success stories where immunosuppressants have allowed them to return to a normal life? If anyone can provide any guidance/words of wisdom, they would be most appreciated... thanks to all!

John

 

[Barb G]

Hi John,

I'm new here, not yet diagnosed with lupus but with things increasing leaning in that direction and currently experiencing "neuro's saying it's rheumatological and rheumy's saying it's neurological" as well. I can't speak about sjogrens but I have read a very good book about one woman's experience with lupus and immunosuppressant drugs that I think might help you and your wife understand how immunosuppressant drugs work. The book is Living With It: Why You Don't Have to Be Healthy to Be Happy by Suzy Szasz. Suzy nearly died from lupus and recounts her struggle and treatments. Her story as told in the book helped me understand how important immunosuppressants are and how they work. I highly recommend you obtain a copy through your library. I think it's still available through Amazon.com as well.

Barb

 

[Lily]

Hi John and welcome :welcome:

I'm sorry you wife is so ill. I have both SLE and Sjogrens and have CNS disease mainly vasculitis which caused me to have seizures and several mini-strokes. I also have a movement disorder.

For me the immunosuppressant Azathioprine (Imuran) has been a godsend. It did take me around a year before things stabilised completely as far as the CNS but it's very rare for me to have an episode these days.

However I am still very photosensitive and if I am in the sun even with protection (sunscreen, hat etc.) I start having symptoms cropping up again. I also have some kidney problems, albeit not too serious as long as I am sensible. I have had to live around this but compared to the alternative it's no biggie.

Like all people with Lupus and Sjogren's it's a must that I minimise stress and get plenty of rest, otherwise I am in big trouble again.

Unfortunately I have not been able to work and am on disability. But at least I am more stable than I was and am no longer walking the tightrope I was. It was pretty horrid there for a while.

I hope your wife does as well as me, or even better I have had no further brain lesions or tia's since beginning it a few years ago :thumbs:I am still living with dystonia (the movement disorder but even that is not as out of control as it was).

Good luck to you and do let your wife know she is very welcome here (as you both are!) there is always someone who can identify with what she is going through.

love
Lily

 

[Pink Pearl]

Hi John,
I have lupus and sjogren's, plus a few other hangers-on. Like the others, for me it is pretty much the same as they have said.

I am sorry your wife has been going thru so much trouble. I have also faced the "go see your......., not my field" garbage from doctors. It seems neuro docs are trying to pass the buck more and more.....go see.....Dr X/Y/Z, but not my worry.

I have a posting down under cytotoxic drugs on my 17 year history with methotrexate. If it is any help, I am here, and doing so much better than when I started on it. Yes, I am still using it every week.
If I can help any, let me know with a PM. (private message)
Sally

 

[debatat]

Hi John

I am sorry to hear that your wife is so ill. I dont have sjorgens, but, I have lupus and sticky blood, I also have neuro symptoms. The neuro to rheumy volley game is not much fun, I have experienced that. I am glad that you have now got a good doc as often that is the key. I dont have experience of many meds except steroids, for me they were fantastic.

I really hope that they get your wifes treatment sorted. As hard as it is learning to pace yourself, can really help, as well as protecting yourself from the sun as much as poss.

Sorry that I cant be of more help, I just wanted to wish you well. I know how hard it can be.

Deb

 

[LolaLola]

Dear John, Welcome here. I hope the site will be lots of use to you.

x Lola

 

[onetay]

John,
Hi and welcome to the site. You just found out why we all just love this site. There are so many people here that really care and freely share information with each other. We have a chat room I do hope that you will join us in there sometime soon, it can be a great place for support, help, and a nice release of stress. Your wife is more than welcome to also join us at anytime for some help for herself, would love to have her. I hope you are both doing well.