Sjogren's seems to be getting worse - just started Methotrexate

It seems like recently my SS is starting to get more aggressive. The joint pain is coming back with a vengeance, and it's really going after my glands now. Before, dry eyes and dry mouth were just an occasional mild annoyance (fatigue was a bigger problem). But my eyes have been bothering me more lately, and my parotid glands have really been swelling. Thankfully, the swelling doesn't hurt, and I don't look like a chipmunk yet. But it's definitely noticeable.

Up until just recently, Plaquenil was helping a lot. I think it still is, to a point. But for whatever reason, it seems like the Sjogren's is getting more aggressive on me. My rheumatologist just started me on Methotrexate today. He said it should help with the joint pain and swelling in my glands.

When I read about it, I was kind of nervous about some of the scary possible side effects. But then, all medicines can have weird side effects and most people never get them. I'm pretty lucky that I never seem to get any side effects from any medicine. So if it will help, I'm willing to give it a try. The rheumatologist did say that we will have to test my kidneys and liver periodically just to be sure they're not being affected. But I have to do that anyway, just because of the Sjogren's. I trust him, he really seems to know what he's doing, and he didn't think I would have any problems with the Methotrexate.

My question is...have any of you had your Sjogren's get worse like this? And have you taken Methotrexate? Did it help any?

The Methotrexate did nothing for me all.

300 Naproxen was useless but 500 Naproxen gives me relief.

All the best.

I don't take that particular med but in answer to your other question…yes. I have definitely had times where Sjogren's seems to take a huge leap. Its a little different from a flair but it does seem to settle back down for me. I haven't had it continue to progress at a crazy rate for long but I go from being fairly steady for a little bit then it jumps. Its hard to explain. It scares me a little when it happens but I've kind of gotten used to it. I hope it settle for you too. Hang in there.

Mine seems to flare when the heat and humidity return. Mine is managed with diet and supplements. The past two weeks have been horrible with the fatigue, joint pain and melancholy. Today has been a bit better.Hope you are feeling relief soon.

I took methotrexate for a year and it didn't help me. Make sure you take folic acid with it. Also, my former doctor suggested milk thistle to help my liver.

I didn't have joint pain or swelling put have horrible dry eyes and mouth. I do now have fibromyalgia. Just started taking Cymbalta. Fingers crossed. Seems better but sleeping more poorly.

Yes, my Sjogrens has gotten progressively worse as time goes by, especially with the joint pain and digestive issues. I went from 190lbs to 124 because of the issues its caused to my digestive system. It is now starting to cause blood clots and my dr wants to start me on Rituxan which I am terrified to take! I have taken Methotrexate but it did more harm then good for me. Exesive vomiting, fatigue and hair loss, I eventually took myself off of it. I currently take Plaquenil, Meloxicam and Leflunomide for the joint pain and swelling which has worked fine up until recently which is why my doc wants to start me on something more aggressive. I hope you find relief soon.

I lost weight with plaquenil but that stopped and now I just seem to gain it.

I take Cymbalta. Could not take it at night. It caused me to be wakeful. Take it in the morning and have had no problem with it. Hope this helps.

GuinevereP said:

I took methotrexate for a year and it didn't help me. Make sure you take folic acid with it. Also, my former doctor suggested milk thistle to help my liver.

I didn't have joint pain or swelling put have horrible dry eyes and mouth. I do now have fibromyalgia. Just started taking Cymbalta. Fingers crossed. Seems better but sleeping more poorly.

I take it in the am as well. Hoping it gets better with time.

I do not have joint pain and my dry eyes and mouth are mild. My rheumatologist suggested Exovac which stimulates the nerves to produce moisture and the one time I used it it did the job. I had to stop for other reasons but other people on this site think it's terrific. Look for it under Exovac. Jaycee

Well, so far so good. I took my first dose of the Methotrexate on Friday (6 tablets of 2.5mg, which I'm supposed to take once a week). The rheumatologist also gave me Follic Acid to take every day. I don't think I'm getting any bad side effects. Well, my stomach was upset and I was nauseous and constipated for a while (sorry if that's TMI!)...but I actually also ate at a new place for lunch on Friday, and I think I ate too much that day. So I really don't know for sure if it was a side effect from the MXT, or if it was just an upset stomach from something I ate.

I didn't turn yellow or throw up or anything scary like that. So I think, for now at least, I seem to be doing okay. The stomach problems are mostly gone now and I feel pretty much normal. Well, as "normal" as you can feel with Sjogren's. If anyone else here has taken Methotrexate and got any side effects from it, when did they start and how long did they last?

I just hope it helps, because my joints have been hurting pretty bad lately :(

dumb Sjogren's...

Wondering how you are doing?

Hi Gatewatcityca,

My Sjogrens has flared up too just this weekend. I started 2 days ago with an ulcer inside my top lip. I now have swollen and very painful submandibular gland and parotid gland and an infected cluster of ulcers stretching from the front of my top lip right to the back of my mouth, all of this is just on the left side of my face. I have had to visit the out of hours surgery twice over the weekend as things got worse and am now on 2 types of antibiotic and steroids. The medical staff that I saw knew nothing about Sjogrens and relied on me for information but I guess they can't know everything! I'm in agony and look like the elephant man! I'm desperately hoping it goes down before work tomorrow!


I'm sorry I haven't given any updates on this in so long. But I just wanted to say that so far, I don't really seem to be having any side effects from the Methotrexate. It might have upset my stomach somewhat at first, but now I don't have any problems. It seems to be helping with the joint pain too. My wrists and elbows still get sore sometimes, but not nearly as bad as before.

I have not been diagnosed with SS yet, waiting for referral to rheumatologist but I was prescribed methotrexate 6 weeks ago when I had a tooth extraction. This was the first time for months that my chest stopped hurting but I only had a course of 5 days and the pain came back quite quickly. Methotrexate made me feel very poorly but I went with it as only for five days and needed it fir tooth. Do you think this could have helped my chest it it's inflammation from SS?

Gateway - I just took my 5th injection of mtx tonight. It still makes me queasy and sometimes causes vomiting, but antiemetics control it pretty well. I’ve lost some hair. Started having headaches after about three weeks.

All the side effects seem to be easing up though so I’m going to hang in there.

For the first time in a countless amount of time, I have hardly any pain (besides the headaches.) My hands are very close to pain free. I didn’t realize that they were swollen until they weren’t. LOL

My liver/kidney function and blood counts are still good at this point.

The fatigue is a little better, but I am hoping that with time or dose adjustments it will improve.

I couldn’t use Plaquenil due to diabetes (type I) and pre-existing retinal discoloration.

I’m happy so far. There seem to be a few baby hairs coming in so maybe this means I won’t lose anymore. :slight_smile: