New News

Hi all. It's been a while. Some of you might remember that I posted in October that I had a lump in my armpit. Well, it took me a couple months to get up the nerve to ask my doc about it. It isn't a tumor.

I went for results of a 3 day eeg today. My neuro says there was seizure activity on it and that I am definitely epileptic. Apparently it is caused by the SS. The seizure activity is in my left temporal lobe. I'm relieved to know I am not insane with all the strange symptoms I have, but I would have rather my neuro said oops I was wrong. Anyway, just have to get used to another new reality I guess. I am now wondering if I should file for disability.

Its good to see you back here. Thanks for the update even though its a mixed bag. It sounds like you have a good team working with you but I'm sorry to hear you are having to deal with another new norm. As you said though, there is some validation in getting to the bottom of things (and we're not nuts. LOL). I hope they bring a treatment plan that gives you relief.

They are increasing my oxcarbazapine twice during the next two weeks to see if it will stop the seizures. My plaquinil doesn't seem to be helping at all. I seem to be getting slowly worse.

I recently read an article from someone who said SS doesn't worsen. I laughed. If it doesn't worsen, why would they give plaquinil to slow the progression of the disease, lol.

Anyway, i do seem to have a pretty good team. I don't like my neuro much. She makes House, MD look like a cuddlebug. But she didn't stop at the first eeg which only showed I had a bad headache. I'm hoping my rheumy can figure out a treatment plan for my SS/fibro/arthritis though. i am so tired of being in pain all the time.

Hi, I am Lucy and know where you are coming from with pain. My doctor put me on Azathioprone for my pain. It is a an immune suppressant. He added Predisone for three months which was great. But as soon as I came off Presidone I have been having a lot of flare-ups. I go to my doc tomorrow and going to ask if I can stay on Predisone. I hope they find a plan that will help you.

For any of the disease modifying drugs it can take up to six months for them to kick in. As a general rule long term use of prednisone is something that should be avoided. I encourage you to express your concerns about the azathioprone not seeming to work yet and talk about e risks and benefits of prednisone, as well as what levels may be acceptable for longer term use.

I had to laugh at your description of your neurologist. Mine is a little warmer that House but has the same single mindedness about getting an answer. I said something to his nurse about that one day and she stared at me for a long second then bust out laughing. She said that sums him up alright. I'll take that and know I'm being heard and well cared for.

I do want to second what Stoney said about things like took a few months to reach full potency for me and it was well worth it. If I didn't know it would take so long (and that the side effects would go away) I would've quit but it has really helped me in the long run. I do hope they find what works for you. Its hard when we have additional issues going on...I find that my team adjusts meds and treatments based on the bigger picture so what's right for one isn't always good for another. Also seconding what Stoney said for that reason, please talk to your doc and ask lots of questions. Sometimes understanding what it is that they are seeing makes me feel better about the path we are taking.

I have been on the plaquinil since i was diagnosed well over a year ago. it seemed to help somewhat for a short while but doesn't seem to be doing anything now.

Well that stinks. I apologize- I was reading your post as it being new to you. Definitely talk to you doc. For me it eased up the fatigue quite a bit and makes flair ups less severe as far as joint pain. I was so bad I would barely make it in from work and pass out right on the couch for a couple hours...completely dead to the world. It doesn't knock it out entirely for me though. The doc says it slows the progression of the disease but its impossible for me to say if its working or how well at this point. I do know its not as bad as it was before I started taking it. Hopefully they find something that works for you.