Hello all,
Oh Gosh, where to begin???? Well, I started having 'episodes' of severe joint pain off and on for a few years, the I saw my PCP back in 10/10 and he looked at me like I was crazy but after some arguing he did the blood work. it came back and WOW! he sent me to a Rheumy fast! my ANA, SSA,SSB,RH factor, and ESR were all positive. the first rheumy looked at me and said Sjogren's and Lupus and wanted me to start Plaqunil. the 2nd Rheumy for the 2nd opinion said no Sjogrens but yes Lupus. But I started Plaq. to help me feel better and it has helped so far with the pain, fatigue and brain fog.
We moved an now I saw a 3rd Rheumy (so I can get so continued care....I have no idea what I am doing) and she said no lupus (yet) but yes to Sjogrens.
Can you have Sjogren's with no dryness symptoms? I work in Ophthalmology and most of my Sjogren's patients are very uncomfortable to say the least with their dryness issues with their eyes. Could my Dx, be wrong or could I just not be exhibiting the full range of symptoms, will Plaqunil curb some of the symptoms from starting? I didn't really like my Rheumy and there isn't another one in the area here. but she also told me that we will do my blood work again in 3 more months and she said that it could be gone.....is that even possible??????
well, that is my story and I am stickin' to it! nice to meet you All!
hootyhu1, welcome to the forum. Even though your Dr's do not agree on what you have, you have the symptoms. Some of us have posted what we are taking in our signatures to help others find what may work for them.
Thanks Joe! could I have Sjogren's even with out the dryness issues? Any and all info, kind words and listening is very appreciated-Hootyhu
Hoootyhu,
Love the handle.
Dryness without Sjogren's (that's me so far)
Sjogren's without dryness.
I'm old here......and confused!
Welcome.
Hugs.
Elaine
Hi Elaine,
I guess I should feel lucky that I have a DX. but I have heard so many conflicting things and the docs contradict one another as well. the only thing I know is that meds make me feel better. and my husband has actually realized that there is something 'wrong' with me (before he was in denial). We did get the green light to try and have another baby so that was the big answer I was looking for, so we are kicking around the idea of another baby to add to the mix. I figure if anything, at some point another child will keep my now 1 1/2 year old occupied for more than 5 minutes.......I know wishful thinking:)
take care all=hootyhu
Hi Hootyhu and welcome!
When I was diagnosed with Sjogren's/possible Lupus dryness was not a major complaint for me. My eyes were a little dry, but I thought it was "normal dryness" not a problem. I didn't think my mouth was dry, my main concern was joint pain, rashes and fatigue.
I have been on the Sjogrens/Possible Lupus ride since 2003/4.
First rheumatologist suspected Lupus, pos ANA, sed rate, anticardiolipin/lupus anticoagulant, but would only treat me with NSAIDS even when I wasn't any better after 10-12 months.
So I went for a second opinion and was diagnosed with Sjogrens/possible Lupus even though the dryness wasn't my main complaint (actually was an afterthought on my part after the rheumy started asking questions). she still felt Lupus might be a possibility but didn't want to diagnose it as long as no major organ involvement and DS-DNA and SM antibodies were negative. She started me on Plaquenil and Evoxac, along with an NSAID.
My ANA, sed rate etc...continue to be positive but have gone down since being on plaquenil, but my SSA is now strongly positive as well as positive lip biopsy (done before SSA became positive), so I am comfortable that Sjogrens is correct diagnosis. She still checks me annually for Lupus antibodies.
I am fortunate that dry eyes and mouth aren't a huge issue for me. I do use artificial tears 3-4 x a day for comfort and Evoxac has increased my saliva but I didn't notice that much driness until I started treatment , then it was like ....Oh, I guess I was really dry because this feels so much better!...I do have alot of cavities and dental work even though I am diligent about brushing and flossing.
So yes, You can have Sjogrens and not realize how dry you really are because it feels "normal" to you, a Schirmer test, Rose Bengal dye test, salivary flow test can show if you are really esxperiencing dryness. The ANA can and does fluctuate and can even go away especially with treatment, but you only have to have 1 positive test to be considered "positive. Make sure you get a copy of the lab test incase you go to another doctor and need to provide a copy at some time. The other antibodies can also fluctuate, but I am not sure about if the ever go away. Mine have remained positive. She doesn't even check the positive ones very often anymore. The treatment for both Lupus and Sjoren's initially is Plaquenil, so either way you are getting the correct treatment. It is good she is going to recheck labs in a few months. Autoimmune diseases tend to evolve and so are hard to diagnose so many doctors will watch how your symptoms and labs develop over time to come to a more firm diagnosis. Sjoren's and Lupus in particular look very similar so unless you have the positive antibodies or lip biopsy or something that is very specific to that disease it will be hard to come up with a definate diagnosis. The important thing is that you are getting treatment and your improving, and that they continue to monitor you.
Hope this was helpful.
Nancy
Thanks Nancy, that did help me a lot. I have done a Schiermer's test and I am super wet! like I said, I work in Opthalmology and I have had all of the tests done on myself and other techs as this is how we learn. I think I was just a little put of buy the new Rheumy mainly because I had a list of questions and then when it wasn't about Lupus they all kinda went out the window. Thank you everyone for your ears!-Hootyhu
Hi Hootyhu :)
Welcome to Sjogren's world.
Yes you can have Sjogren's without the dryness symptoms even though they are the 'hallmark' symptom. SjS is very individual. There are a multitude of symptoms. Some develop many. Some don't. Different symptoms develop at different times with different people. Some have steady progression others have very slow progression and symptoms that come and go. Some have symptoms that once they have come - they stay. We really are all different. It's totally unpredictable too.
I've been dxd with Lupus/Sjogren's overlap because I have lupus bloodwork but SjS symptoms. The treatment is the same anyway. Plaquenil is meant to stop disease progression and alleviation of symptoms as they arise.
Take care - Scottie :) (Long may you not be dry!)
I think Sjogrens sneaks up on you (progressive) until it gets bad enough and you notice it.
I just put up with the 5-8 yr sinus/throat infections, dry eyes, lotsa teeth cavities, occasional partroid gland swelling, etc. But combine em all together and it wasn't "normal" and add to that my wacky bloodwork #s and my gp started me going to specialists to find out why.
Yeah I HATE it when doctors contradict each other. I remember once my mother had two doctors that contradicted each other on the amount of a med and a blood thinner med she was taking. And they BOGH had the same tests results. Duh???
We sounds like you are at least making some progress. Basically for 6 years I just had specialists run tests, and pat me on the head and send me home. I got a whole Differnt opinion of "specialist >:(" now and so does my gp.
I am just now having issues with dryness. I was DX last yr. I have noticed terrible fatigue, joint pain and stiffness for awhile. My eyes are dry somewhat, and my mouth a bit, but I can make saliva, and tears.....
hootyhu1,
Sounds like you have already received a lot of good advice from the others...so I will just add my welcome to you. I'm glad that you found us here and hope you return often...lots of advice, information, and friendship to be found here! :)
Thank You Everyone!!!!
Hi, I'm also new and I haven't really presented myself properly. I've had Sjogren for 15 years but apart from dry eyes, nose and mouth I haven't had any other symtoms but my last tests showed ena positive so my specialist gave me plaquenil but I haven't taken it because I'm worried about the side-effects!! I know I'm a bit stupid but as I get older I seem to refuse medicines and I don't know why! Has anyone had any problems with this medication? bye to all or as I say as I live in Italy ciao....
ingy54, If I have not said welcome I have said it now. I am an unusual case. I went blind for 6 hours after the first pill. My Rheumy did not think that was a bad side effect. I found a different Rheumy. Most find that after taking it for a bit it does wonders for them.
Hi..I'm new here and confused! Just wanted to say hello. I've been looking for a site like this for over a year now since I've been diagnosed with SJS. I found a chat room but talk to fast in there for me! How nice to find somewhere where I don't feel isolated and misunderstood! Hope to learn a lot from being on here..look forward to chatting to you :)
Hello Ingy and Emily :)
Welcome to Sjogren's world.
I've taken Plaquenil for 7 years now with no ill effects and I do believe it has helped. All medicines can have side effects but not everyone sufferes from them. If you know what they are - you know what to look out for.
Take care - Scottie :)
Welcome emilyb.
This is going to be a 3 all in 1 . . . . .
Welcome new members hootyhu1, ingy54 and emilyb - glad you found our forum.
Hope you find this site helpful to you on your Sjogren's journey. If you are looking for a specific topic/subject - if you put those word(s) in the search box to the top left of this page, it will take you to previous threads about that topic/subject. Can't find what you're looking for? By all means, start your own thread.
emilyb - we met last night in chat. Yes, chat can move along quite quickly with several conversations going on at the same time . . . you did fine last night. Since you are new to chat - if you come and "watch" what happens, then when you feel comfortable, just jump in . . many times we're answering a question or comment that has jumped down the screen a ways . . that's okay. You can always scroll your screen up to catch a comment too.
Welcome Ladies. ;D
Bucky
Hi new people, I have been here 6 years and I am more confused than ever, sorry to say!!!!
I had the sjogrens way, way back when I was 20 years old and am now 68 years old. I was dry for years and didn't know it. I just thought my thyroid medication made me thirsty. I had a ton of dental work and many teeth pulled and in the process of getting my last 16 teeth pulled when I got diagnosed with Sjogrens in 2003.
Someone said we get used to is. Right on! If it comes on gradually you adapt methods of dealing with the dryness and don't even realize what is going on.
I never had dry eyes until after I was diagnosed in 2003. Dry eyes was the last thing to hit me symptom wise. I started the Restasis within the next 8 months or so and have been using it ever since. It has helped me big time. irish ;D
Hi, I'm also new and I've found this forum really helpful because I have found lots of answers to my unanswered questions!!!!!
Hope you find it useful too, take care :)