sounds like you need a new doctor. I've never had any side effects from plaquenil, yet you've had nausea and hair loss. I'm so sorry everything is so frustrating right now. It is my opinion that your doctor is no more concerned about your symptoms than it sounds, you need to find a new rheumatologist. Good luck!

I've read that peoples hair does fall out with Plaquenil and I have nausia from it if I do not take it with foor. Most times the only reason I eat is to take my medicine. It does suck though. I'm thinking we all need to volunteer for the SS research in Calif. or the MD's will never knowhow to help us.

I hate Sjogren's, too! What a nightmare this is.

My wife had serious side effects on many drugs, she is now only taking evozac for dry mouth, the disease is bad, but sometimes the "cures" were worse...

I can understand why you are so furious and this is a great poace to vent. Unfortunately, depending on the symptoms. tjere os often not much that they can do, really...also, we don;t know exactly what you reported to the doctor, and what his findings were.I don't believe that he thinks you are a nut case. I can understand your frustration, tho.

Hey Jeffmom, first of all, here's a BIG HUG for you!

Yes, this disease is very frustrating, and you can vent here any time you need to because WE actually understand what you are talking about!!! I agree that you probably need a new doc, somebody that has a bit more empathy.

Also, have you tried a diet change? I have often posted about my vegan diet and it really does help. I have to admit though that I've fallen off the veggie wagon recently, mostly because of budget constraints (imagine that!). Anywho, I can sure tell the difference when I eat better and I credit the diet with putting my SS into remission.

Also, I've been pretty open about my taking antidepressants although people either love them or hate them. I don't believe in taking a pill for everything, but there are some meds that really do serve their purpose. Actually, I tried for years to get off the antidepressants because I thought I could reason my way out of my depression. But, right now I think Cymbalta is a Godsent. It not only controls a little of the pain, it helps my attitude so much it is unbelievable. Everyday life is easier when you are not depressed and frustrated because of the things you face.

Anyway, I think pain and depression run together and it sure has helped me to get both of those under control. This is something you might want to address with your (new) doctor(s).

Take care, and a hug to everyone!
tx

We all hear can certantly sympathize with you, I think we have all had that condesending look from a doctor. I think that they just don't know what to do. I take my plaquinil at night and avoid that neausea, I have recently started noticing hair loss, but I have lots of hair to spare! But would like to loose the weight that this disease has caused me to gain!

So what is really part of the disease and not, its hard to tell it all runs together.

If the restasis is not working maybe you should discuss that with your eye doc, I just had punctal plugs put in my eyes and although I have no moisture still, it does help retain the eye drops and I don't have to put them in so much.

I have heard that this disease can go into remission but I would like to know how and when.

twtwinmom talks about cymbalta, my 22 year old daughter has fibromyalgia and is on it and nothing else and she only has flare ups once or twice a year and it has helped her moods greatly. Something to think about if you feel the disease is getting the best of you.

Many people talk about diet and say it helps, you may want to check out a website, www.andrewweil.com he is a naturalist and has made an anti-inflamitory food pyramid, he lives here in Tucson and works in the same hospital as many of my docs.

I hope you are feeling better soon. Vent anytime.

Jackie

Here's something that may help you as it has made a world of difference for me! I started Plaquenil about a month ago (also my doc increased my Synthyroid dosage) and I am just now starting to feel like I have energy again, so give that drug a little more time. Before that, I felt so tired and sick all day long and could hardly keep my eyes open by the end of the day. The REALLY great thing is my Doc put me on Nexium for my stomach problems (bloating, cramps, upset) and that is a miracle drug! Within 24 hours I felt sooo much better. Within 3 days, all of my stomach symptoms were gone! I have combined it with a Gluten & Dairy free diet and I feel unbelievably better...I'm actually getting close to feeling like my old self. My hair started falling out too, but I believe that's definitely slowing down after being on the Plaquenil for a month. Also, I cut my hair to my shoulders to make it look thicker!
I am in an "upswing" right now, but I have definitely felt hopeless about this disease...you know, feeling like there is nothing positive to look forward to in the future. I have an appointment next month with a doc to discuss handling stress, anxiety & depression. I need another med like I need a hole in the head, but I'll try an anti-depressant if the doc thinks it will improve my outlook.