New to Sjogrens / SWF

[markt]

Hi all, good afternoon

I was recently diagnosed with Sjogrens and am trying to learn as much as I can.  This diagnosis was way our of left field for me, as the symptoms (severe dry-eye w/ inflammation, somewhat dry mouth, and dry skin) sort of just manifested themselves over the course of a month until I found myself incapacitated on slick-leave, unable to work, take care of my family, etc. and being passed around from one Dr.'s office to another.  I am finally being treated, and am very thankful for the medical professionals I met along the way during a very rough time.  That said, I am still working myself out of a pretty deep hole with this first "flare" and have started Prednisone, Plaquenil, Pilocarpine, Hydro-Eye, Doxycycline, Restasis, Analogous blood-serum drops,  etc. in the hopes of becoming more comfortable/functional and finding my new "normal."  On that note... does healthy glandular production typically come back for Sjogrens patients once the autoimmune response is somewhat muted via medication and the inflammation goes down?  I can only hope anyways.  I look forward to getting ahead of this and back to my family that needs me so!

- Mark

[Joe S.]

Welcome to the forum. Learning to manage your symptoms is important. It helps you to reduce the strength and duration of your flairs.

You can have a long life with this illness. It just may be a little different than you originally planed.

Some of us have posted what we are taking in our signatures. Before you try any medications or supplements please check for counter indications, drug interactions, and side effects.

When you visit with your doctor, take an advocate with you. Your advocate may hear something you miss or help you explain something that your are having difficulty with.

[A Mom on Spin]

Mark,

Welcome to the forum, but sad you had to join us.  I'm glad you found a correct diagnosis and doctors willing to treat you. 

I can only draw from  my own experience to answer you, and that is that Joe's answer is right.  99% of us have to keep managing our symptoms for the remainder of our lives.  Even though I have been on different immunosuppressants for 18 months, the destruction already done to my tear and saliva production appears to be irreversible.

Many, but not all,seem to get relief from fatigue and joint pain from the antimalerial drug, placquenil which is usually the first drug tried, but have never really heard of it providing relief for mouth and eye symptoms.  Encouraging that they prescribed the eye serum drops so early in the course of your disease.  I've been dying to try them.

Lots of luck on your Sjogren's journey.  It's different for each of us.

Liz

[trejonina]

Hello you are the first one that is prescribed doxycyclene. I have been on minocyclene and doxy for 7 yrs.There are people who have been on these antib. for 20 + yrs nonstop. THey do not causen antib. resistance, I've researched this myself. This protocol/treatment is found in ;   www.rheumatic.org   . Click in medical histories there are three sjoggies: Heide. Marge, Jodi ,all from USA. ALSO info google:   Lupus,Sjongren's Syndrome -Road Back Foundation . I'M ON IT AND HAVENT SEEN A DOCTOR since 2010, nor ever gone to a hospital or emergency ward. No PLAQuenil it might cause blindness, or methrotexate it can cause cancer.Fatigue still bothers me and other things but I manage. Do your resarch and decide.

[markt]

Thanks for the encouragement, much appreciated.  I was sort of curious, since a lot of folks here are prescribed Plaquenil (a Disease-Modifying Antirheumatic Drugs (DMARD)), does it in fact modify,(or change) the symptoms associated with Sjogrens/Sicca patients?  Just wondering... 

[warmwaters]

The anecdotal evidence suggests Plaquenil provides pain relief, and possible slowing of the disease damage for some. It's been in use for a long time, but there are limited quality studies that show if it works for Sjogren's or how it works.

You should also see the Sjogren's treatment protocol setup by Sjogren's Foundation, a non profit which raises awareness and encourages research about Sjogren's.

[Liz D.]

I found that Plaquenil helped me greatly with the fatigue and just general well being.  It does take awhile, like months, to get into your system so you have to be patient.

Liz D.