New here, but not to SJS

[dryndown]

Hi, been reading the posts for quite a while but never joined until now.  I've learned alot about my disease from your discussions.  Had RA for going on 5 years, now take MTX and prednisone.  When I went on the MTX six months ago, I got nausea thought it was due to the Plaquenil. I discontinued it, but I know now it wasn't the plaquenil, because when I went on the injectable MTX, no more nausea.

Going off Plaquenil was the worst thing I could have done in my opinion.  I started with dry eyes, then dry mouth,  couldn't swallow food very well-would stick in my throat - like a chicken trying to swallow a frog! No appetite, all food tasted like cardboard, no smell either.  And weight loss 10 pounds in about 3 months.  So gastro doc does blood work and finds elevated pancreatic enzymes - scares me to death. Orders abdominal ultrasound, CT cat scan with dye isolating pancreas - all normal.  Had upper and lower scopes all normal.  So they are of the opinion all of my problems are due to SS.  I am going back on plaquenil tomorrow with Rheumy's blessing also will start....medicine that many of you are on Ex...? medicine to stimulate mouth wetness. 

Could you please post what helped you to stabilize weight loss - not that I didn't NEED to lose some weight, but there are better ways

[Scottietottie]

Hi dryndown 

Welcome to Sjogren's world. Quite a lot of people do get nausea from Plaquenil but I'm glad that probably wasn't the case in your situation. When I started Plaquenil I was told to taper up to the recommended dose. half a tablet every other day to begin with, then a full tablet, then a tablet one day and half of one the next etc. Also - take with food!

I'm afraid I have no advice about the weight. I have an underactive thyroid and although medicated, I find losing weight really hard but I need to!

Salogen and Evoxac are both medications that stimulate saliva. Some like one and some like the other. It's all very individual.

I hope you find the site useful.

Take care - Scottie 

[Chickpea]

Hi dryndown

Welcome!  It's interesting to hear that you noticed such big changes when you stopped taking Plaquenil.   Lots of us are on it and are convinced that it helps but it's good to hear that you've 'proved' it for yourself.  I hope you adjust well to going back on it from tomorrow.  As Scottie says, tapering the dose helps with any possible side effects especially the tummy ones.  Like Scottie, I took half a tablet a day, then half morning and night, then up to the full dose.  I took a few weeks to build up to the full dose, and I always take it with food especially yogurt.

I lost a lot of weight over the summer when I had gastroparesis.  What helped me stabilise my weight was eating small amounts 5 or 6 times a day, rather than 3 meals a day.  It's important that the snacks are healthy ones rather than empty calories like cake!  Cereal with fruit and milk, or a granola bar, or a smoothie - mid morning and mid afternoon.  Also before you go to bed if you can manage it. 

Hope this helps.

Take care - Chickpea

[lynnmarie219]

Hi dryndown!

I just want to welcome you as well to Sjogrens World! I'm another one who has thyroid issues and I find it extremely difficult to lose weight even though I need to...so I'm sorry but I'm no help for you in this area!

Read as much as you can here  and ask any questions that come to mind...you have found a comforting place where you can feel safe and supported!

WELCOME!!!

[Patze]

HI dryndown!

Let me also welcome you to the SJS World and family!  Like the others have said, look around and don't be shy about asking questions if you can't find what you're looking for!

I'm with the others, I too can't lose weight to save my soul!  The darn thyroid has been kicking my buns for years now, and I'm still working on finding the right dosage.

Again, welcome and I hope to chat with you soon!

Take care -

Patze

[voiceteacher]

I'll join the "can't lose weight" club.  My thyroid bloodwork is all within normal but it's moving more towards hypothyroid since my diagnosis.  My endo is going to keep tabs on it and see if it's a trend - if so, she'll treat it.  I did manage to lose 40 pounds before I got sjogrens but it took 10 months of strict, no cheating, dieting - - I did weight watchers.  I got 18 points - the least you're allowed to have.  For maintanance you're supposed to be able to add 4 points but when I did I gained weight.  I shoot for 18 now just to maintain - I don't always succeed but I'm really trying.

Voiceteacher

[JannaLee]

I lost about 20 to 25 pounds pretty quickly too but have stabilized for about a year now.  I think the plaquinil may play a role in weight loss or it's the Sjogren's but if you hang in there for 6 months or so the nausea will settle down and I found my pain and fatigue greatly reduced.

My only trick is to eat yogurt every day in the midmorning.  It keeps my tummy somewhat settled. AND NEVER TAKE PLAQUINIL ON AN EMPTY STOMACH!!!

Best to you, Dry!  I look forward to knowing you better.
Janna

[dryndown]

Thanks to all of you folks for the warm welcome! I plan to keep reading and keep learning from the site.

[Claire the Red]

I'm a little late getting here, but I went through a bout of horrible digestive problems recently and was not able to eat much. Since I can't afford to lose much weight, I had to figure out a solution. What helped me for a couple of weeks was drinking an Ensure Plus (I think that was the one... no lactose, no gluten & extra calories) once or twice a day. I could still drink those when I couldn't stand the thought of eating anything else. Welcome, and take care.