Hi to all,
10 years ago I had my first big flare. I saw all the specialists and tried the prednizone, plaquenil route, with minocycline, salagen and a few others thrown in along the way. After the first couple of years I realized that it was not going to get any better and I cut out most of the specialists, relying just on my primary care doctor. For the most part, I have just been stuck in low gear-not terribly sick but never really well either. Most of my symptoms have been treated and I have just kind of chugged along.
Now I am in my second big flare and have to go another round with the specialists again. I am surprised and dismayed to find out that not much has changed in 10 years. The treatment options seem almost the same. When I first became ill, I saw one of the world's leading specialists on autoimmune disorders of the eyes. He told me that Sjogren's was a "hot" disease, with lots of research and that there were many new treatments in the pipeline.
Maybe this is a dumb question, but what happened? The whole thing seems like same old, same old. Are there any "wow" new treatments out there that you have had prescribed? Is there any progress at all, besides the new eye gels? Is there anything out there that I should absolutely pursue with my rheaumie?
Hey cinmac,
Great question. I think in my next rheumy appt I will ask in regard to these very questions. I wish I had an answer for you.
I am sorry for your recent flare. I know when I am not in crises with my issues, I tend to forget that this is real and has a habit of surprise attacks.
I am anxious to see replies to your post here.
blessings kimbo
cinmac:
Are you on Restasis? It has made my eyes nearly normal.
Rituxan is still being researched as a cure for Sjs but it is a cancer drug with many terrible side effects.
I fear that with the new "health care reforms" coming our way in the US, money for research into new drugs will dry up - many prominent politicians have already proposed that medical research and experimental medical treatments are too expensive and "the elderly" should just learn to live with their aches and pains until they helpfully die and stop costing society any money that rightlfully belongs lining the pockets of our Bureaucratic Overlords.
Sue
Hi cinmac
It's amazing to hear that ten years ago SjS was a 'hot disease' with lots of research interest. What happened?! How come so many doctors still haven't heard of it, let alone have any idea how to treat it. And don't get us started on delays in diagnosing it!
You say that you stayed with just your primary care doctor. Did you also stay on the meds or have you restarted Plaquenil/Prednisolone etc etc? For many people Plaquenil can make all the difference, combined with specific treatments for dry eyes/mouth. But it does take 3-6 months to kick in, as you probably remember from your first time using it.
From what I've read the main changes in treatment have been use of immunosuppressants, as Sue says. A few of us here are on Imuran; and even fewer on CellCept. I'm one of the latter and I've been on CellCept (mycophenolate) for 7 months, along with Plaquenil/Prednisolone/pain meds etc. Now it seems that it's not working and I'm due to start on another form of chemo: cyclophosphamide. Because I'm in the UK the high cost of CellCept wasn't an issue for me, but I don't know if it's always covered by insurance in the USA.
Let us know how things go when you see your rheumy.
Take care - Chickpea
This is distressing to hear!
I was diagnosed a year ago and my rheumy said just about the exact same thing yours said 10 years ago~
I agree with Sue about the future of medical research in the US and fear there will be no incentive for future advancements.
After hearing it's going to take our government until 2039 to rebuild the World Trade Towers I am more than a little discouraged when I imagine those same guys in charge of health care!
Janna
I agree. We are in big trouble if we go to socialized medicine. We will lose good doctors and researchers.
Anna
Try having a 4 year old with sjs. Everybody looks at me like Im a nut case. I had to fight really hard just to get Jennas Rhumy to give a final diagnosis. I cant tell you how many times I heard 4 year olds dont get sjs. Even looking at her positive blood work her peditrician said it cant be sjogrens. I would like to know when doctors are going to look at the symptoms you have and stop assuming that its viral. It seems to me we all know more about our own symptoms and diagnosis then the doctors do. It kind of makes me angry at all the research into Autism(even though my son has PDD) but I can find hardly any information on sjs.
Thnx to all of you. Right now I am on prednizone 50 mgs and tapering downward. I tried restasis but it burned too much. I do have all 4 ducts plugged-2 cauterized off and 2 with removable plugs although my doctor says I will never live without them again.
I was on Plaquenil for a while but a Rheaumie at Lahey told nme there is no research (this was about year 2000 or 2001)to prove it works for Sjogren's so he recommended stopping it. I thought I felt a bit better on it, but I'm just the sick one so what do I know.
I am on minocycline for eye inflammation, Salagen to produce moisture, tramadol for pain.
Most of the time I plug along at about half energy, but the prednizone is because I am in a big flareup and quite down and out.
Thanks again,
cinmac
Hi Jonnell,
I wanted to send a special God Bless out to you. The only thing that could make this illness worse is to watch an innocent little child suffer from it. I don't know what to do about ignorant doctors, except stand your ground, but your child is lucky to have a mom like you who sounds ready, willing and able to do battle.
Don't let the turkeys get you down.
cinmac
Cinmac, Thank you very much for your kind words. I wish you the best as well I guess we all have to be our own advocates. Hugs and Kisses Jonnell and Jenna