SS Medications

I would like to hear feedback for these medications - Plaquenil, Evoxac, and Salagen. Side effects? Improve SS? No effect?

I am currently on Salagen. It really helps for me. I am supposed to take it 3 times a day, but only take it once. It doesn't last very long, which is why I guess they want you to take it often. I took it today because my tongue felt very dry and cracked. I have not had any side effects, but I have only been taking it for about a month.

I too have so many reactions to drugs, I'm handling dry mouth a little with sugar free eclipse gum; but i'd really like to know about Plaquenil, sounds promising; any one doing better with it?

I am only on Plaquenil. In the first couple weeks it caused nausea, etc but once it started getting better, it got better fast. Now I just need to make sure to take it with food but feel no side effects at all. Keep in mind it takes months to build up in your system so relief is not right away. i've been on it 2 1/2 months and the doc says its still very early…more like 6 months to really see it. The only changes I've noticed is that I don't have near the problem I did with overwhelming fatigue. I still get tired faster than most and my sleep still stinks but the "knock you over where you stand" kind is gone. The pain hasn't changed but flair ups are shorter, then settles back to my normal achey level.

I use Evoxac, and couldn't live without it....it helps me so much. I hope you try it, and have good luck with it.

I have psoriatic arthritis and sjogren's, so I'm on a bunch of medications. I have no significant side effects and I take plaquenil, leflunomide, and Enbrel. Specifically for the sjogren's I use Evoxac, and love it! I take it only twice a day, not three times. But I would wake up in a panic before I started taking it, because I was so dry that I couldn't swallow. It's made a huge difference to me.

I AM hoping to stop taking plaquenil soon, as I am weeding out some meds since starting Enbrel in the last 6 months.

Plaquenil: No side effects. Took away face rash for good from lupus. Not sure how it helps SS except prevents a degree of inflammation.

Salagen: No side effects. Really helps with saliva but occasionally have to chew gum or suck a sugar free lozenge.

I have been taking Plaquenil and Evoxac for a long time. Seems to help a lot. Once in a while I find my self drooling, but for the most part I'm good. I quess I have been lucky, I have tolerated most medications. I have never taken Salogen however. I hope you find something to help.

I took Plaquenil for a month. It gave me excessive abdominal gas and cramps. Had to quit. The problem stopped immediately. My R.A. said she hadn't heard of this happening before. I noticed a number on a blood test for Sjogrens antibodies was reduced by 25 or 30 pts.during the time I took the Plaquenil. I thought that was significant but the R.A.wasn't impressed. If you take Plaquenil, tell me if you have a problem with gas and abdominal pain.

Dustcatcher….are you on any other meds that may be causing or enhancing the reaction? I know I said I am only on Plaquenil but I meant for this in particular. The doctors have me on 6 prescriptions and 3 supplements. I was getting very sick too, till I went back and did my own homework. I found that D3 and one of my heart meds don't mix and have to be taken a minimum of 2 hours apart. (no one mentioned that little tidbit). Since I made the adjustment, I'm back to normal. So is my appetite, too…. not sure that's such a good thing. LOL

I have been taking Plaquenil 3x day for 2+ years for SS and RA. I didn’t know it helped until I stopped taking it for a month. I have constant nausea and some vomiting from Trigeminal Neurolgia so I can’t really say that it is caused by Plaquenil. I also take methotrexate, an anti-inflammatory, anti-thrush med, dry mouth med, Restrasis, and several meds for my type 2 TN.

TL… I have RA…SS…and TN too!

Agape’s Mom, I’m sorry to hear that, it’s a nasty combo, isn’t it? Are you having any success in having it under control? I have really good Neuro, Neuro Surg, and Rheumo and that has made a big difference for me. But now that part of the TN is controlled I am having to learn about SS and RA. I cut down on the meds for TN and had to stop the Methotrexate for surgery and had a bad flare and didn’t even know what a flare was! All my Drs and my attention was spent on the horrendous TN pain and meanwhile the SS and RA was rolling along even though I was taking a bunch of meds for them. I hope thing are going in a positive direction for you! Take care.

Drooling? How I envy you.

I have been on plaquenil since my Sjogren's diagnosis almost 10 years ago. Honestly, I can't tell if it helps or not but I don't feel any side effects so I don't worry about it. The one thing that seemed to really help me with movement and joint pain was upping my intake of Vitamin D. I take a number of different meds, so it is hard to tell what does what, but I do feel like I've had more mobility and less joint pain since starting Vitamin D supplements.

Salagen made me sweat profusely, so I dropped it. I do take Evoxac two to four times a day and it really helps. It is particularly helpful to take before a meeting or party or other situation that will require me to speak at all. Most of the day I'm by myself and have very little interaction with others -- so as long as I don't talk or exercise, my mouth doesn't get too bad. I try to use Xylimelts at night to keep my mouth moist overnight.

I had severe nerve pain recently and my doctor recommended gabapentin. I felt like it made me so tired!! Again, not sure whether it is just the sjogren's or what, but I didn't really like the gabapentin. After discussing it with my doctor, we have cut the dosage in half and I am tolerating it a little better.

I'm curious about how people have fared on antidepressant medication. I've taken antidepressants for years -- 25 maybe -- and have tried everything under the sun at one point or another. My depression seems to be well-controlled for now on just fluoxetine. Doctor had me on Wellbutrin but then he decided that might exacerbate my Sjogren's symptoms. Just wondering if anyone else had thoughts on antidepressants and Sjogren's.

THANKS!



EnjoyLife said:

Dustcatcher….are you on any other meds that may be causing or enhancing the reaction? I know I said I am only on Plaquenil but I meant for this in particular. The doctors have me on 6 prescriptions and 3 supplements. I was getting very sick too, till I went back and did my own homework. I found that D3 and one of my heart meds don't mix and have to be taken a minimum of 2 hours apart. (no one mentioned that little tidbit). Since I made the adjustment, I'm back to normal. So is my appetite, too…. not sure that's such a good thing. LOL