Hey everybody. Since I've been dx'd with Sjogren's and systemic lupus I've been hanging out at support forums for those two conditions and I've learned a lot. At this point I'm trying to decide if it's appropriate for me to come here as I used to. Most people here have RA and it seems I definitely don't have that, although I take many of the same drugs as you.
Please believe me when I say I'm not asking for a bunch of "Oh please stay," posts. I know most, of not all of you are too kind to say this is the wrong board for me. I've found that the lupus forum here is quite inactive so that's why I searched out another lupus forum. Anyway, I'd like to know how many of you have systemic lupus and/or Sjogren's without RA involvement?
My Sjogrens is with RA. I think you should stay as this is a support board no matter what
I have RA and also sjogren's. I've had problems with dry eyes, but lately its been a real problem -- one eye is RED and very irritated. I'm gomping on eye ointment, but getting it in my ole eyeball is difficult as I have limited range of motion (rom). So whenever someone comes over, I ask, "would you mind putting this stuff in my eye?"
Though you don't have RA, you have conditions with similar symptons we with RA deal with. If you find the folks here supportive, nice or interesting, then stay.
By the way, what's the link to the site for the sjogren support group, maybe I can get some info about dealing w/my severely dry eyeball. Thanks in advance.
Jesse,
We have a ton of people that have different disease - supposedly myself included. Please stay. We love you!
If you do talk to Lupus people, would you please get your supposed diagnosis verified? One of JSNM's docs insisted she had Lupus but the DNA test proved him wrong. There are more tests than 'well, I'm ruling this out so...'.
Hugs,
Pip
hi jesse, well first you know i'd like you to stay, but you have to do whats best for you :)
I don't know anything about S... disease, I have a friend w/ Lupus, who's been hit pretty hard, she's an online friend and the fatigue , this yr, has been extremely bad for her.. actually after about 5 yrs, she's gone the homopathic treatment way.. but I have no idea, what that includes.. our communication has been cut drastically , w/ both our fatigue!
Wish you the best~alwaysJoie, the link for Sjogren's World is:
They're a very nice group of people with knowledgeable moderators who have already given me good information. Come on over!
Pip, I will ask the RD about the DNA test at my next appointment. I've just recently read about that test. Since the treatment is the same as when I was "undifferentiated" he may have felt no need to pursue further tests. But I'd really like to know what the DNA test says. I do have the positive ANA, and other tests that can contribute to a positive lupus dx but he wasn't ready to commit to it or even Sjogren's until just recently.
Well, so far I'm not seeing much lupus activity here, but I appreciate the welcome to stay.
Pip, I just did a bit more research and for some reason, anti-DNA tests are not done when the positive ANA has a speckled pattern, as mine does. I guess I'll just have to ask him what has changed to confirm his dx. I'm going to PM JSMN - there is something niggling at the back of my brain but I can't remember what it is.
Either way (AP or not) you should know what your genes are doing. And something about this just rings wrong. Most rheumies throw the possibliltiy of MIL at you as a way to talk you out of AP - neglecting the doxy part.
Personally, I just wanted to know exactly what I had - RA, PRA, Lyme, some strange alien disease picked up in the Bahama's. It didn't matter to me at all what it was as long as they could 'prove' it. In AP we call them 'lumpers' or 'splitters'. I was a splitter - meaning I HAD to know exactly what it was. Now I believe the lumpers - different manifestation of the same cause. But...at the time...LOL
Pip
Jesse!! You can not leave me!! you're my "ear" buddy!!!
I have Sjogren's... my ANA indicated it.. but it was Poo Pooh'd by the first RD.. then the second got the DX of RA and away we went w/ that.. but I'm going to have to push for the SS DX.. because I have HORRIBLE issues w/ that.. and even the Restasis and the hormone cream don't work for the other things... and I constantly drink water... Is there a pill to put the moisture back?? UGH.
I think I joined sjogrens world!! Look for babs3169!!! that's me on the forum!! .. I'll see if I can find my password..
Babs, you're a sweetheart. I don't really want to leave, but I think it's important that I don't take up time and space where it's not appropriate. There are too many people here with true RA issues who need support and help. Anyway, I'll look for you at Sjogren's World and I'll still stop by here from time to time. If there's anything of value I can contribute, I'll certainly do that. I do have some MTX and Plaq. experience to offer and now Imuran too. I just get more "knowledgable" all the time, LOL. I wish I could give you some info on the dryness issue. Strangely, I don't have that problem, the most common earmark of Sjogren's. I have the nerve involement instead. However, the brochure the RD gave me lists some hints that I've listed at the bottom of this post.
Pip, I have to admit your comment, "Most rheumies throw the possibliltiy of MIL at you as a way to talk you out of AP - neglecting the doxy part. " touched a nerve. I can't help but wonder how long ago he decided on lupus and Sjogren's and only told me now. I know he was worried I'd stop the MTX and Plaq. (said it would be dangerous with my neuro issues) and may have told me just to let me know how serious he thinks this is. The timing is a bit of a coincidence. In the meantime, I'm patiently waiting to hear from the PCP about his request to the insurance company to let me see the AP doc. I may just do it on my own if refused, but I'd sure like to have some financial help with this if possible.
Dry Mouth: Chew sugar-free gum, or suck on hard candies to increase saliva. Numoisyn lozenges (prescription) can help. Use saliva substitute sprays (OTC): Glandosane, Moi-Stir, MouthKote, Optimoist, Oralube, Salivart, Xero-Lube. Salagen or Evoxac is another prescription for dry mouth.
They only mention estrogen creams and lubricants for dryness "down there." Sorry, there is no mention of any pill for overall relief.
ok.. any suggestions for a very dry nasal passages???? LOLI have both RA and Lupus, as well as Sjogren's Syndrome, and Antiphospholipid Syndrome. Seems like several anti-inflammatory diseases go together like peas and carrots (to paraphrase Forest Gump).Sure it is appropriate for you to hang here if you want. I am glad they found a dx for you. Maybe not the one you wanted to hear. But helps to know what you are treating. Sjorgrens I have. I also have undetermined something. I also have RA. Because infact i am strange and to sick to have just RA and Sjorgrens they say. I do not see any undetermined support groups to venture off to. Well my blood work is tainted by to much prednisone. So this leaves me in a caught 22. Everyone hangs out on this forum. You can bounce back and forth. We still love you. I understand you want to learn as much about your illness as possible. So do that. Of course. But still let us know what you are doing and how you doing. Babs, I did a Google search and it says steam with a humidifier and there are also some nasal sprays that will help.
OK, I'm not seeing anyone here with lupus and/or Sjogren's who doesn't also have RA. But thanks, Milly. I still expect to pop in once in a while. Especially when I need a little drama. LOL
Hi Jesse
Hope you pop in even when you don't need some drama. Did blood tests finally determine Lupus? I don't know much about it other than when first going to the dr and they did the ANA and?? test. Both negative for me, while CCP and RF was positive, but it makes me nervous about what else is floating around in my body yet to surface as it seems that people end up with more than one autoimmune disease.
Hope you're enjoying the weekend.
Cathy
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