Fatique is a given with Sjogren's. I can fall asleep every day usually around three and go to bed early every night. However, I am still working full time and just recently have worked it out with my manager and HR to work one day a week from home. I am sensitive to meds also and just went through my second go around with Plaquenil but don't think I will be able to continue with it because it causes infernal itching and this time around I broke out in some rashes and hives also with the itching. I don't know what other options there may be for me. I believe the next drug up is methotrexate. I am so sorry I cannot take the Plaquenil as it is one of the milder drugs and I do think it was going to help. I do know it has helped many, many people with no problems. Mostly you must keep a good watch on your eyes with an opthamologist. I wish you luck. Do give the Plaquenil a try though. Get a base eye exam first though. They do a different kind of testing for those about to start Plaquenil.

Thanks so much, whiteja. I have had a thorough eye exam but not specifically geared towards the Plaquenil. I will call them and see if I need to make an appointment - that's very helpful. The fatigue is frustrating. I work full-time too, and have evening activities and I just don't have my old energy to keep me going. I have a hard time accepting that SS is affecting me as much as it really is, so I guess that's something (else) I'll have to work on. Good luck with your meds... I'm afraid I will react negatively as well but I'll give Plaquenil a try.

I'm sure you don't feel all that lucky, but being able to see the experts at NIH really is a good thing. Sorry your pulmonologist was right.

On the Plaquenil question, it may help to slow down the progression of Sjogren's so you don't develop major new symptoms. It really helped to calm down my swollen salivary glands, lymph nodes, improve energy, reduce aching and joint pain, and generally give me a higher quality of life after a few months of taking 400mg/day.

Methotrexate is usually reserved for multiple problems, or folks who can't take Plaquenil. My eyes were always fine, but after years it caused my leg muscles to get so weak I couldn't climb a flight of stairs. Since my world isn't all on one level, that just didn't work for me. I've been on Methotrexate for about four years now. I take a low oral dose (7.5mg) once a week to reduce the strain on my liver. When I'm flaring, I take 10mg once a week, usually on Friday night so if it makes me tired, it's on the weekend and doesn't interfere with my work. So far I haven't really had any trouble with it, and I'm feeling better now than I have in years.

Evoxac should be started slowly. Ignore the directions that say to take it on an empty stomach! I actually begin eating, then take the Evoxac. When I get the rush of saliva that it helps to produce (after 10 years of taking it,) it's part of the normal eating process and doesn't bother me. When I took it on an empty stomach, that rush of spit made me think I was nauseated. I started out with just half the capsule, mixed into applesauce. After a few weeks, I took the other half at dinner time, gradually ramping up to full doses three times a day after about 3 months. One of my Sjogie friends was in the Evoxac study at Scripps in La Jolla, so she gave me insights on how to adjust more easily. It really did help. It has the advantage of having a four hour half-life, so you get prolonged relief from dryness.

No one is fan of more pills, but some things really do make a big difference.

One final comment, once you have opened the door to autoimmune disease, you can get others. On the fatigue front, I used to fall into bed by 2:00 on Friday because I was so wiped out. Then I finally talked my doctor into running a thyroid panel, and I wasn't even close to being on the chart. Turned out my thyroid had conked out about the same time as I was diagnosed with Sjogren's, but everyone blamed the fatigue on Sjogren's and didn't check out my thyroid until I finally insisted on it. The TSH test is an indicator -- high numbers mean low thyroid output -- but mine was only 2, which should have been normal. When the doctor ran the thyroid panel, my numbers were so low that he actually told me he didn't know how I had walked in from the parking lot.

Hopefully your eyes won't get much worse. Restasis has been a wonderful addition to reduce the chronic inflammation that I had, even with punctal plugs to hold the supplement eye drops in place longer.

Babble away. At least you know here that we can relate.

Hi I have also recieved confirmation of having Sjogrens Syndrome in the last week or two - I have been on plaquenil for 5 days now - today so far I havet had to touch a pain killer and its now almost 7.30 pm but I didnt go to work so will have to see.

I havent had any eye tests yet - I cant see that specislist until october and i wouldn't really say my eyes and mouth were dry but I do get burning at the back of my throat and the fatigue and aches have been an issue.

I also have raynauds - are u on medication for this? i found my doseage of nifidepine didnt reach my feet but the doctor is changing my meds for this which i'll get on friday. If i can get this and the tiredness under control i will be happy

starting to feel like im getting my life back

If you have raynaud's you are not primary - you are secondary. I have a mild case of it so far , but as SjS goes it always can get worse over time.

I'd recommend highly , finding out what your vitamin levels are too. Make sure you supplement the ones you are low on. Usually B vitamins. Also you'll want to take 2000-4000mg of D daily. I use a krill based omega fish oils to lube the joints and keep inflammation down.
I also take plaquenil with solid success.

Exercise, sounds like a torture remedy but it works the best of all. Get blood flowing and you feel better. I don't mean start running marathons or training with Arnold just a nice walking or swimming regimen or whatever form you like that's low impact.

http://www.opt.indiana.edu/ce/syspharm/part2.htm ...scroll down to plaquenil.

As for fatigue no cures for that ......you get a flare and bingo. I fall a sleep at 2 pm then again at 8pm...then sleep through the night. Wake up more tired than when I went to bed. Luckily wecan manage flares and also fight through them once you know how,


.... and read the brain fog thread you'll see we get it.

Thanks, everybody, for your replies and support! I started Evoxac and Plaquenil today. I appreciate all the advice and will take it all to heart. MrsCV, I do not take anything for the Reynauds - it doesn't really bother me until the cold weather hits and then it's bearable, just uncomfortable. Tom59-On the exercise - I'm very active in the martial arts and will keep up as long as I can. Some days are better than others but exercise in general always makes me feel better - and hitting targets/bags is a real plus for the frustration factor. I highly recommend it! NIH was a huge blessing and I realize that. DryRDH - that was awful about your thyroid! You poor thing! I know that kind of fatigue - I've had it and it's horrible, like walking in mud. As for vitamin levels, my doctor is really on top of my blood work. I am hypothyroid and at one point my Vitamin D level was at 9!!! But everything is back on track for now. I'm hoping the meds will make a difference in my energy levels and my crickety painful joints. Sometimes it's hard to tell whether it's age catching up to me or the SS but it is what it is. TomSJS - I was diagnosed by NIH as primary even though they knew I had Reynauds but I feel like you're right... good point. Well, off to eat and sleep - never can get enough of the sleep. Take care everyone and thanks again!