New to this board. Looking for advise...

[rwharo]

I was recently diagnosed with Sjogren's based on symptoms and eye exam.  My blood work came back negative and I am not sure if I want to undergo a lip biopsy.  Anyway, I'm a little freaked out because I'm only 34 years old and have two small children.  I work full-time and my husband has a really busy job.  My initial symptoms were REALLY dry eyes.  To the point that they stuck together at night.  Then about a month later my mouth became SEVERLY dry.  The past few weeks I've also felt really tired, fatigued, sick to my stomach and other weird symptoms.  Here are a few questions that I hope you all could help with:

1. Should I start Plaquenil?  This seems like a "big gun" drug and I'm pretty sensitive to medications.
2. My doctor recently prescribed Celexa since I'm not sure if my recent fatigue and lack of energy is due to sjogren's or just being depressed about having Sjogren's.  My husband thinks I'm depressed...  One of the side effects of Celexa is dry mouth!!! I definitely don't need that.  Anybody else on Celexa?
3. Does anything help with the fatigue?
4. Salagen vs Evoxac?  I took one dose of Evoxac and felt horrible for the next 2 days.  Not sure if it was the medication, but it really did seem to help the dry mouth and eyes!

Thanks for any advise you could offer!
Raquel

[Gayle]

HI Rwharo,

I don't use Celexa but sure there will be others along to talk about that.

It is hard to accept a diagnosis sometimes. Some of us have been in the diagnosis loop for years and years and yet when we get one it can be a relief and terrifying all in one. Depression is fairly normal and the meds will probably help with both issues. There are things you can use to help the eyes, the mouth dryness, etc!! The only thing that helps my fatigue is rest. Period.. it is hard. Many are raising little ones or did and they and we survive it but it has many challenges.

Use the search button at the top right and you can find all kinds of posts about things that people tried and liked, vs. stuff that DOES NOT work at all for anyone.

Many people here are seronegative. Many have had a lip biopsy with no problems, others did, many won't have one. That's me. I am being treated with Plaquenil and while it took a long time till I finally started thinking it was helping, I now know it really is. Also i have Pilocarpin but it sometimes makes me sick and sometimes not... so I don't take it as I should.

Plaquenil is a DMARD - disease modifying... drug... it will help slow the progress of the disease. I don't think it is a big gun but definitely a great medicine if you can take it. Some have side effects, some don't. The one thing about Sjogren's is it is different for all.

Welcome to the site though I am sorry you needed to find it. Stick around and read. Have your busy husband read too... it will help him to understand better.

Search for 'spoon theory' - It will help you to as you try to learn more, deal with it all and explain to those whom you care to share with. Good luck!

Gayle

[jazzlover]

I am not on any of the above meds, so I can't help there.

I personally would never do a lip biopsy. Too many say they now have numb lips. No thanks.

Also, have you tried using eye ointment at night? I even use a little bit during the day.

WELCOME!! 

[Piebird]

My fatigue is REALLY helped by B 12 shots.

Have you had your B12 level checked? I cope much better when my levels are high.

I dont absorb B12, that is why I do the shots.

Also, I am on antidepressants. They make a world of difference for me in my life. I cant go without them.

[Katybarstool]

Hi Raquel

Welcome aboard! I'm glad you've joined us.

I've been taking Plaquenil for around two years nwo, and it has really turned my life around. I also take a low dose of antidepressants for neuripathy in my feet, but it definitely helps my mood, and helps me to get a good night's sleep.

They are both worth a try.

Kathyx

[Sleepy In Seattle]

B12 helps me too, energy-wise.

Plaquenil really is one of the more benign drugs used to treat this stuff - many, many people take it with no real side-effects to speak of. You won't feel the full effects of it until the 4-6 month mark, though - you have to give it time to work. Usually if you have side effects, they are worst in the first month - if you can adjust and get through them, they often go away.

For me, I had some stomach upset and WEIRD dreams. I found that taking a large daily dose of probiotics helped (don't take them at the same time as the plaquenil). Don't take antacids within 4 hours of plaquenil - they reduce your body's ability to absorb the drug. Also, some people have fewer side effects with the name-brand than the generic. I take the generic with no problems, but sometimes it matters to folks. Take it with food, and if it bothers your stomach, ask your doc about splitting the dosage so you take one in the morning with breakfast and one at night with dinner.

That sounds like a lot of trouble, but really - many if not most people have no problem with it. At this point it bothers me far less than Ibuprofen does! My fatigue and joint pain are much better, and I went from waking up 15+ times a night to sip water to only doing it maybe once - sometimes not at all. HUGE difference. Not everyone reacts that way - it helps some more than others - and my Sjs is secondary to Lupus, so you never know - but it CAN be a VERY helpful drug. It has been around for many years and is well-tested.

You should get an eye exam every 6 months to check for retina toxicity from it - it's extremely rare, and goes away if you stop taking the drug, but it's worth staying on top of it by getting the exams.

Do keep in mind that these diseases can be damaging your body in ways you are not aware of, so taking SOMETHING to help arrest the disease can be really important.

Definitely discuss your concerns with your doc.

Best of luck to you - let us know how you're doing as things progress!

[matildamillicent]

Welcome,

I found the lip biopsy extremely painful and I still have a numb lip. I would not recommend it. Especially considering your doctor is happy to give you the diagnosis and treat you based on your symptoms.

1. I would. Especially if you have symptoms like joint pain and fatigue. It's definitely helped with these symptoms for me. It has improved my eyes and mouth too. Most people are sensitive to Plaquenil at first, you might like to ask for a script of anti-nausea medication, that's what got me through. It's not really a big gun, it's a very good medication, I have had a lot of relief and I'm so glad I tried it (I'm sero-negative too).

2. I'm not sure about Celexa, I'm not on that medication. But I wouldn't be concerned about taking anything that's going to dry you out further.

3. Plaquenil has definitely helped my fatigue. I use to be too tired to leave the house, on my good days I could go to the supermarket or visit a friend, but I would be fatigued for the next few days. Now, I'm out of the house at 8am, home by 4pm (I'm studying at university) and I do it Monday-Friday and still can enjoy my weekends.

4. I don't take Salagen or Evoxac, it's not available where I live.

Good luck.

[Scottietottie]

Hi Rwharo,

Welcome to Sjogren's world.

I think Plaquenil is worth a try. I never thought of it as a 'big gun' medication. A lot of people who have passed through here have found it helpful but it doesn't suit everyone. If you do decide to try it - taper onto it slowly. Half a pill every other day to begin with for at least a week. Always take it with food. It took me a month to taper onto the whole dose. It takes up to 6 months to work anyway - so its worth the effort.

Unlike Matildamillicent I did not find the lip biopsy painful. I found it straightforward, I healed well and was not left with any numbness. It seems to be the luck of the draw as to who does it.

I can't help wit your other questions because I am not on those meds.

I hope you find the site useful.

Take care - Scottie