Sjogrens World Forums

Good morning all.  I am new to the forum I have not had a positive reading but have had the majority of symptoms.  I have had severe dry eyes since last March2011 and then the last month has been terrible, Dry mouth, joint pain, pins and needles all over body.  I was just wondering how long you have you all  had the syndrome and what is life like?  I have four kids 11, 9, 3 and 6 months and a decent job, my wife is a stay at home mom and doesnt have a degree so I am the sole provider of the family so I was just wondering if you are still working and how long have you been working with the syndrome.  I dont have very good health care as my company is a non-profit so all my prescriptions are very very expensive as are my doctor visits.  I also do not have disibility insurance so going on SS disability and getting 600 bucks a month will not be an option.

so any encouragement will help.  I am over the stage of "why me" and just thanking God that this wasnt Cancer or something more serious!  I am going to fight it more than it fights me, so on with the Thera Tears 500 times a day, sips of water 500 times a day, Advil, pilocarpine, fish oil and other herbs and vitamins.

Thanks for your help, Jeremy

Welcome Jeremy!
I am sort of in the same boat as you - I'm a 32 female mother of two and was just recently diagnosed.  I am not the SOLE provider for my family, but I am a key provider, as in we do depend on my income.

Since I haven't been diagnosed very long, I don't have any personal experience on what life will be like. But I can tell you that my mom and sister both have it, undiagnosed and untreated, and both of them still work. My mom is 60 and my sister is 38. 

I too was terrified when first diagnosed about 7 months ago. But I am like you - I decided I am not going to let it get me down and I'm going to do all I can do in order to maintain what health I have.

I would say the best thing you can do for yourself at this point is get on plaquenil. It has resolved my pins and needles sensations, helped my dry mouth, and given me more energy.  However, as you probably know, it is not without side effects. Right now I am looking at having to reduce or stop it due to ongoing hair loss from it. And you MUST get your eyes checked regularly. But it is worth a good 6-8 month trial if you can.  And pilocarpine is definitely a good one to stick with as well.

Some other supplements that have been found in studies to cool the inflammatory response are:  vitamin d3, fish oil, turmeric, and green tea. You can do a google search on these and tie in the word "autoimmune" and find all kinds of good info.  But of course, check with your doc before loading yourself up with supplements.

I have no doubt you'll get a LOT of helpful responses on this site. The people on here have been a Godsend for me. This site pulled me through my darkest days after diagnosis. I think you'll find it as valuable and comforting as I did/do.

Oh and one other thing...

Have you tried restasis for your eyes? I know it is pretty expensive even with good insurance, but you might call the company to see if they have a program that would help you afford it better.

A lot of people say it has helped their dry eyes immensely - myself being one of them.

Have you seem a Rheumologist yet,  You need to find a good one.  You need to have an ANA test.  It still can be negative and you can still Have SJS.  There are lots of things you can use to help with the dryness.  Right now you are using many of them.  Your determination to fight this will help a lot.  I've had this for probably over 10 years even though I've only be diagnosed for about 2 years.

Good morning Jeremy,

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Definitely you have found a great support group. Hope you will feel right at home here.

I was diagnosed with Sjogrens and Lupus about a year ago. Diagnosed with Raynaud's syndrome many years ago.  I have related to you as far as being afraid. I have come to handle it this way, that I have Sjogrens; Sjogrens does not have me.

As for hindsight, I know that I had been symptomatic long before I was diagnosed. I have had so many cavities, root canals, extractions, cracked tongue ( from decreased saliva) etc. I felt like I wasn't doing my dental hygiene well enough. So, I would brush and floss harder and more frequently - still another cavity.... No dentist ever mentioned Sjogrens.

Over the years I noticed increased fatigue, but thought it was because I was working 8-12 hour shifts, had children etc. It was taking me longer to recover.

To make a long story short, I went to the opthamologist for a check-up. Told him that I had dry, painful, scratchy eyes. He measured my tears and there was hardly any. He asked if I had dental problems and trouble swallowing ( not enough saliva), I said yes. He said that he thought I might have Sjogrens syndrome. I also had ptosis ( a droopy eyelid). He referred me to a rheumatologist and neurologist. Ptosis can be caused by nerve damage from an autoimmnune disorder.  That's when the diagnosis were made.

I have not been able to work for a about a year and I have applied for disability.

Don't take sjogrens lightly, it is serious. As with every disease, it affects people differently.  I have a lot of fatigue,pain, brain fog, depression, tingling, numbness etc. As a matter of fact, I have an appointment this month to see a gastroenterologist for the swallowing problem - food and pills get stuck in my throat and esophagus.

I have no medical insurance either. Some of my doctors have lowered their cost or I pay when I can. I have been able to get some help from an organization called St. Vincent de Paul ( free clinic). They help with some of the meds. I am in the process of contacting some of the pharmaceutical companies to get some help. Some of them will supply you with free meds.

hi Jeremy  :)

Welcome to Sjogren's world. SjS is toatlly unpredictable but there are treatments that will settle flares down a bit or slow down progression. Now that sounds scary but with many people it doesn't progress much at all. Others have a bad time.

A lot of Sjoggies find Plaquenil is helpful but I think you would need to find a rheumatologist to prescribe it.

I started getting symptoms when I was in my early thirties and at the weekend I am going to be 60. I'm still at work. I am trying to cut down on hours now but that's partly cos I'm not enjoying my job any more.

Anyway - I hope you find the site useful.

Take care - Scottie  :)

I was diagnosed in April although I am seronegative.

I have been put on restatis, Salagen (pilocarpine), and Plaquenil. I would highly recommend Plaquinel if you can. It is the least costly of them all. For me they have all been lifesavers, and I love the restatis and Salagen.

I too have 4 kids (9, 7, 4 and 2) and I am at home. I feel as though I could work now, as long as I am feeling as I am presently but when I was sick in April, there was no way.

You  need a rheumatologist very quickly because they help so much.

Good luck to you!

Just wanted to say WELCOME!

I was diagnosed in September of 2009. I will say that for me I am in a better frame of mind now than even a year ago. Not sure if it is just the acceptance of my disease or my outlook but I am better for it.

I still struggle with pain and issues but overall I think that I am happy. I have two kids aged 7 and 5 and they keep me busy as I am a stay at home mom with my own company. It was a big struggle with my husband, we had problems and issues as he wanted me to be the same old me. We have worked through that as well.

I wish that I could offer some fantastic advise but in my experience you need to try and find a great doctor and start to treat your symptoms. I still feel scared and afraid, I don't think that will ever change but how I deal with those feelings has changed for me.

Well I am so sorry to hear of your diagnoses I am very happy that you found this wonderful place. Again, welcome.

Dearest Jeremy,

It's the beginning of an adventure......

Sure, you wouldn't choose it, but you now have some great travel companions.

Many of us, by the way, NEVER get a positive reading on blood work.   You're welcome here, as are we all.

Important idea:  Sjogren's and all auto immune conditions have different paths and outcomes for everyone.

So, take what you need here and leave the rest.  Many have very productive work lives and high level professional responsibilities.

I think of two people I know with Lupus, one a high power attorney and one the Dean of the School of Education at a college.  And then there's my niece with Lupus who has total kidney failure and is on dialysis waiting for a kidney transplant.  My point is that the same diagnosis can have very very different outcomes.

So, a day at a time!   

By the way I used Restasis for years, then decided to go without it (it IS expensive) and am doing fine without it.  I do use Ultra Systane drops, which are OTC.

Keep us posted on your adventure.

Hugs

Elaine

Welcome to the forum Jeremy.

When I was first injured in 1983 and it triggered Fibro, I was not able to work. I had to rely on my wife's income to support the family. I had been self employed and the accident triggered my loss of two year contract for $100,000 net income. I had to do the hardest thing in my life and lay off 6 sub contractors. I worked to find them other jobs. I had no Job for myself and had lost most of my ability. Five years later I was beginning to walk without someone holding me up. I just needed two canes.

I know it is hard to deal with this challenge that currently has no cure. I often used a quote from Dr. Who, "Where there is life and breath, there is hope".

Jeremy, welcome!

I would suggest that you read "Spoon Theory."  http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/)

Then remember to be patient with yourself.

I hope you'll get as much out of being a member of Sjogrens World as I have! You'll love the search engine at the top, but if you don't find an answer to your question, or if you read a post from someone you might be able to uplift, post away!

I'm glad you found us, but sorry you had to.

A66ey

Welcome Jeremy.  I was diagnosed a couple of years ago and have almost run the gambit of anti-depressants and had bad rxns to all of them.  Right now, I'm dealing with the Sjogren's pain with the help of pain killers for my neck injury. 

As a great side note, I can now go three days between Tramadol dosages!!!  I was taking it twice a day but little by little, I've reduced and learned other ways to manage the pain.

I've got an appt this month with a rheumy who has said that we'll discuss plaquinil and I'm PRAYING that it's not a repeat of my autumn experiences with anti-depressants. 

These people are a great support, Jeremy.  Get your wife to check us out as well. 

While your desire to "fight this" with natural means is understandable...it is important, as you have family members relying upon you to continue working...that you seriously consider medicine..ie Plaquenil...if you find it too difficult to manage without.  Many on this board have found plaquenil (there is also a generic) a lifesaver...myself included. 

Your immune system is overreacting and causing widespread inflamation.  While Vit D. and fish oil are thought to be helpful...it may very well not be enough.

I too had dryness, severe pain, hearing loss, arthritis, severe fatigue and tingling ...really bad in one arm and one foot.  Now I am down to moderate dryness, hearing loss, morning arthritis that goes away,and only occasional tingling having been on plaquenil for over a year.

Hi Jeremy,
I was diagnosed last Feb. I am also one with negative labs, but suffered for years before an eye doctor and rheumatologist figured it out. Besides being on a low dose pf plaquinel and using restasis eye drops, I also made some huge dietary changes thst have helped me so much. Just google anti inflammatory diets or type in the seach box here on this site, and you will finf a lot of dietary reccomendations.

Welcome and  I am glad you found us.

Thank you all from the bottom of my heart for all of your support and guidance.  I am truly blessed to have found you all. and will pray for all of you as well as a cure to this syndrome.  May God be with you along the journey.   It was great to hear from those that have continued to work, my main worry was about providing for my family and the last thing I want is to go on disability.  So with that being said I am joining you all with saying "The Fight is On"   I look forward to being on here with all of you and I look forward to a great life ahead with this syndrome...

One last question alot of you said Plaquinal has been a life saver what low dosage can you be given, I am very afraid to take it has I have had a cornea transplant 10 years ago in my left eye that was not Sjorgrens related.  And have you had any vision problems while being on it.

Regards,
Jeremy 

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.

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)  :P

Please take care and keep us posted.
KellyG

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

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

susanep  :)

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.   

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  :)

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 ;D

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.

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?