almost have a treatment plan

[makabe]

I'm still at that fun stage of early diagnosis... In short review, I've had symptoms for about 19 months including near daily fever, roving joint pain, eye pain/blurred vision, MAJOR sinus issues. Had a positive c-ANCA in August of last year, have been trying to get things figured out ever since.

I saw my ENT to schedule a sinus biopsy just before Christmas. He wants to do that plus a major overhaul of my sinuses and septum. My infectious diseases doctor is not sure that's a good plan and the rheumatologist doesn't really love the idea either.

I followed up with the rheumatologist today who noticed my eye is all red again. When I again explained the regular, severe eye pain I have and that I'm working on about another 8 week sinus infection/bronchitis that has not gone away, he called an ophthalmologist right away.

If that guy agrees that I have scleritis, I am supposed to start MTX/Bactrim/Prednisone/Folic Acid immediately.

I am already on prednisone, but will bump back up to a higher dose. Have been on Bactrim until yesterday when I switched back to Levaquin for the infection.

Now that I'm close to starting this, just curious how the side effects tend to be, in general, on MTX. I'm mainly concerned about nausea/vomiting with the oral meds since I have a pretty sensitive stomach and get majorly dehydrated and hospitalized any time I get a stomach bug.

Sorry for the long message!!

[elephant]

I never took Methotrexate, but my sister had been on it for years for RA. She had nausa and felt tired in the beginning.

[Dirty Don]

I'm on mtx, in tapering. Have been ultra tired at times, then snapped out of it to a degree. Have and still am very dry mouthed w/ a dry cough that comes and goes, but doc doesn't think that's the mtx.

[mishb]

Not a problem at all on MTX although I have not had any other so cannot compare.
I am on 20mg which is about middle range for MTX.


I also get a very dry mouth and need to drink water constantly to help swallow but my ENT feels that this is more because I do all of my breathing through my mouth and not my (stupid) nose.

[Dryhill]

I am on 20mg of MTX and have had no problems with it.

[Dirty Don]

I also get a very dry mouth and need to drink water constantly to help swallow but my ENT feels that this is more because I do all of my breathing through my mouth and not my (stupid) nose.

Naaawww, your ENT needs to rethink what's going on in your mouth/sinus area. Just saw my rheumy yesterday, she really doesn't know what my dryness is from at this point, another appointment with ENT soon after those 2 talk about what's going on. In the meantime, my rheumy has put me on 4 or 5 hard candies a day (dietetic cuz she worries about my weight!! LOL), lots of water, watching out what I eat (herbs/spices set the cough off too), and a night humidifier in bedroom. The coughing has slowed down, I don't dry out as fast, so now we can work on it. So many theories on the dry cough and no one seems to really know! Sheesh...

[Chris G]

While I had some cognitive side effects, I never had a bit of stomach upset with mtx. If you're sensitive, I suggest that you definitely take it with a meal. Good luck.

ENTs always seem to think sinus surgery is the answer. Even before they know the cause of the problem!! Your sinuses might improve with wg treatment. I would wait.

[maria garcia]

My daughter had her eyes red for over six months and after four eye specialist and different eye drops nothing was working. I took her to a rheumy and she was positive for PANCA. The rheumy told me only if it was scleritis she would be put on Meds. All of the eye doctors agreed it was episcleritis not scleritis so the rheumy would not medicate her and said it had nothing to do with her P Anca positive. I took her to another eye specialist, I new a year of red eyes was not normal this doctor is the best eye specialist who specializes in auto immune eye disorders and right away he said chronic episcleritis is due to her Auto immune disorder. She also had a biopsy of her eye and it was positive. Rheumy put her on MTX and pred. then. I was so upset bcse if I had not taken the initiative to take her to another doctor and biopsy he ignored her episcleritis, MtX has been great. No side effects and she is very petite weighs 95 pounds she is taking 15 mg.

[Sangye]

How do they do an eye biopsy? :ohmy:

[maria garcia]

biopsy of scar tissue in her eyelid

[drz]

While I had some cognitive side effects, I never had a bit of stomach upset with mtx. If you're sensitive, I suggest that you definitely take it with a meal. Good luck.

ENTs always seem to think sinus surgery is the answer. Even before they know the cause of the problem!! Your sinuses might improve with wg treatment. I would wait.

My sinus stuff got much better after treatment for Wegs. When I flare now the symptoms come back and even worse sometimes than before my diagnosis. My scleritis was treated before I got the Wegs diagnosed with lots of Ibuprofen and prednisone eye drops and antibiotic eye drops for 10 days and then other drops for a week and it worked for me even without other treatment for Wegs at that time.

[JanW]

Have been on mtx for over two years (now on only 5 mg, was as high as 17.5 mg) and never experienced a single side effect.

[RCOSSIO]

Glad you got a new opinion, Maria.