I am 33yrs old male and new to SS. Scared/Afraid

[Madison Granny]

I haven't had any eye problems since being on Plaquenil.  I'm checked once a year for plaquenil toxicity.  You need to see an optomogist and tell him about the cornea transplant before you start plaquenil.  I was able to start at the regular doses 200mg twice a day with no problems.  Some people have to work up to that dose slowly.  It does take awhile to work.

[KellyG999]

Hi Jeremy,

Welcome. We look forward to getting to know you and sharing tips, info, or just venting. I have a FT corporate job that includes travel and lots of stress. I am not convinced the total stress didn't push me over into Sjogren's, but I just don't know. I have been and working with this almost 2 years, although looking back, I know I have had sjogrens much longer. I have always had tooth decay no matter how many times I brush/floss and rinse per day, and have had dry eyes and mouth with trouble swallowing food and pills.

I have managed to keep on working, although I took FMLA for several weeks when my doctor said I had to do it. I was fortunate to have the 50% of my base pay as disability, then I was able to supplement with all of my sick, vacation and personal time. All in all, it worked out great and I am much better now. (usually) 

Please take care and keep us posted.
KellyG

[Patze]

Hi Jeremy,

Let me also welcome you to the SJS World and family!  Have you had a chance to roam around by using the search engine in the upper right hand side of this page?  You'll find a lot of topics and scads of information on subjects you wouldn't think is connected to SJS.  If you don't find what you're looking for, don't be bashful as there is usually someone about that just might be able to help.

I've worked a full time job for better than twenty years now, and with this mess for almost seven years (when I got the first diagnosis), and it can be misery to be sure.  There are days where it hurts so bad to put one foot in front of the other, and other days where the eyes are so dry its painful to open them.  I take Plaquenil (generic), Restasis, Lyrica, Norvasc, Evoxac, Trazodone among others (sure do feel like a drug store most days! ); like a few other posters mentioned, the generic for Plaquenil is pretty cheap, but with your eye history, I would talk to your opthamologist before you start taking it (can't be too careful when it comes to your peepers).

Restasis and Lyrica can be expensive (there is no generic currently available for either) and I have decent insurance (I also use a mail order pharmacy to help cut costs a bit when I can).

Good luck and I'll keep my fingers crossed that you find a good rheumy.

Take care of yourself -

Patze

[susanep]

Welcome to the board, and a lot of info, and caring folks.

susanep 

[Billydude]

Hi Jeremy,  Another male here.    The testing postive or negative doesn't mean a thing as only about half of the people show positive.  My rhumy says it takes years before the test results catch up to the symptoms.    Just know that  you can have long stretches of time without any symptoms.   Just go on with your life and if anything comes up just deal with it at the time.   Its just a syndrome of maintenance.   

[mshistory]

Hi Jeremy and welcome! I think most people are prescribed 400 mg of Plaquenil and I started on that dosage from day one. I've had no issues from it aside from some insane scalp itching that lasted for about a week. Given our choices of meds to try to control this disease, it is probably the one that has the least risk of side effects so I think it's a good idea to find a good rheumatologist and start a treatment plan - particularly since you're concerned about being able to work for a long time.

I'm a 32 year old mother of two young children and I teach part-time. It is difficult many days because of the fatigue, but I am managing to still take care of my children and do the job that I love. When my kids are a little older, I still hope to work full-time  It is scary how quickly my symptoms have gotten worse since being diagnosed last year - and that's with the Plaquenil. I can't imagine how much worse I would be without it.

Keep us posted on how you're doing and good luck 

[irish]

Welcome to this site. I am going to approach this subject from a different angle.

You will most likely be able to work for a long time if you take care of yourself and manage your activities, meds, work load, etc.

You kids are many ages and a couple on the very young end. I am 68 so I I tend to be more conservative than a lot of people. I think that because of your health status it would be wise to have your wife work on a "Plan B" or something that couple be done to help out financially if the need arises.

It may be that she could attend a community college or get licensed for child care, etc. I don't mean right this moment, but when this baby get a little older. It is better to be proactive and prepared than to be blindsighted by a health issue and abe desparate.

There are many things that woman can do part time or out of the home to earn some extra money that would not totally wreck the job of being a mom. Just something that I felf should be addressed cause one never knows what is down the road. One day at a time with planning!!IRish

[topping21]

Thanks Irish.   It seems like and with God Grace I will be able to work for at least awhile.  I have already made plans and met with a Metlife agent yesterday afternoon to purchase short/long term disability insurance just in case something does arise.  I have been "putting up" with all the symptoms pretty much for a year!  Thank God for Thera Tears, Refresh PM ointment, Water, Pilocarpine, Restasis, Advil, and Fish Oil.  I am going to hold up on the plaqinuel for as long as I can, My Rheumy was very hesitate to prescribe them anyways. 

The good thing about this sydrome is I dont stress anymore at work, whatever happens, happens I dont let anything get to me like I used to, As for the family I am finding great balance with not overdoing it as much as I used to, 4 kids keep you busy but I enjoy more things and live each day to the fullest.

[SjoDry]

Hi Jeremy. I just joined the group also. I am not as fearful as I am frustrated. I have now been dealing with all of these symptoms for 3 years. I have remained seronegative & therefore, untreated. I own a business with my husband & am the president of the company. I do worry about carrying my load and have not been for quite awhile. Also, my husband has heart problems.
Right now I can hardly sit at my desk without feeling like I could fall over. I was given a Rx for Restasis and could not afford to fill it, yet our finances would not qualify for any type of Rx assistance program. The ENT I saw last week told me I had Sjogren's when the tongue depressor stuck to the side of my mouth, but would not write a prescription for something he told me that might help.. without a solid Sjogren's Dx. Wonder if I can stimulate any tears if I beat my head against the wall?