Just a quick note to say "hi" and to introduce myself (hope I got the right part of the forum for this! :-\)
I'm new to the board, but I have had Primary SjS for at least 10 years. My first big flare happened about three years after the birth of my daughter, although I had been feeling pretty bad in the months after her birth, so I suspect that is where things began to go wrong. I was 33 at that time. I had a neighbour with lupus who recognized some of the symptoms and suggested I get referred by my GP (US = "primary") to a rheumatologist, but my GP wasn't believing any of my symptoms. Luckily, I got referred by my periodontist (whom I'd been seeing for dry mouth, gum problems etc).
The diagnosis was made but I was seronegative and a "mild" case, luckily heading into remission more or less after about 6 months. I continued to see the rheumatologist (who made the diagnosis on the basis of the Schirmer eye test), but then figured after a few years of no further symptoms that maybe it wasn't SjS. The rheumatologist admitted that without the antibodies, it was uncertain as to whether it was definitely SjS or not, and with no antibodies after several years I was hopeful maybe they had got it all wrong.
I was rather desperate to feel like I didn't have SjS because my mom and grandma had been quite ill most of their lives---grandma with Rheumatoid Arthritis and very bad psoriasis. She was also seronegative and so they officially called it "Psoriatic Arthritis". Anyway, about 3 years ago I began to have problems with burning mouth syndrome and partial loss of sense of taste issues. I tried various diets, food allergy testing, elimination diets, candida diets etc and found the candida one suited me best but still didn't eliminate all the symptoms.
After a further two years of testing (and after my iron deficiency anemia was corrected), my current GP sent me back to my rheumatologist at my request as I was having bad neurological symptoms. The rheumatologist was fairly nonplussed about the whole thing and said I'd done well to get through 10 years on diet, exercise, supplements etc, but that the time had come for Plaquenil and some more conventional treatments. I agreed and here I am. Just starting Plaquenil today.
He seemed to think that the really awful, horrible neurological stuff (light sensitivity, pins and needles, tremors etc) was actually fairly commonplace and suggested that those with lupus often have symptoms which are more difficult to treat, so I shouldn't despair just yet over my SS neurological problems since he felt they were largely reversible. I hope he's right!
Anyway, that's my background anyway. Nice to meet you all. Struggling a bit on the family support front, as my husband is very supportive but my parents are in complete denial and are trying to convince me not to take any medication for this.
Any help, support, ideas, encouragement, or success stories would be GREAT to hear right now, so if any of you out there feel like sharing anything positive whatsoever, please feel free to do it in this thread!!! ;)
All the best,
Polestar XXXXX
Welcome Polestar. I am treating with alternative therapy since I have problems with MTX and Plaq. Learn what works for you to manage your symptoms.
I welcome you too Polestar.
We all have had problems getting people to believe we are suffering from this strange phenonement !
Just come here instead of trying to get folk understand. You will be listened to, and helped in anyway we can.
Good luck with the Plaque, many of those here are good on it. Keep us informed how it goes for you. Dolly x
Hi Polestar :)
Welcome to Sjogren's world. :)
There are quite a few in here who are seronegative but have been dxd on symptoms. Personally, I have found Plaquenil helpful. It helped me a lot with the fatigue - and helped my eyes a bit too.
I hope you find the site useful.
Take care - Scottie :)
Hello and welcome!
It seems like many on this site also have nerve issues one way or another. I would encourage you to listen to your rheumatologist! It sounds like you have good care. I have learned so much since starting posting here and now I come every day to check things out or ask a question. It is a wonderful resource.
All the best.
Rachel F.
Thanks to everyone who has made me feel welcome and hopeful! I have to admit, I was pretty upset when I was first diagnosed, but after this current flare-up started, I have just been grateful for each day that things are manageable.
I hope to get to know you all better as we go along in the threads. It does help to know I'm not alone anymore!
It doesn't help that everyone says I look great, too, which actually makes things worse! This is because I'm fairly thin because I had malabsorption and colitis, so some of my friends have even said "There's nothing wrong with you!" which makes me feel awful too, since it's like I can't even expect a little bit of sympathy for what I'm feeling or going through. :(
Anyway, it's really very helpful to hear that some of you out there are doing ok and that the treatments are helping! I know that, of course, people all go through hard times too with this, but it's so encouraging to hear that this is manageable and that a few people out there are improving too. :)
Thanks again for all your kindness!
Polestar