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jeriorleans
02-11-2010, 01:47 PM
A.j. has only taken on dose of the methotrexate (4 days ago) and he keeps biting the inside of his mouth. He says it feels swollen. Is this the sores the doctor warned about?

Sangye
02-11-2010, 02:46 PM
Is he taking folic acid? That should prevent mouth sores.

DEE
02-11-2010, 04:59 PM
hi i used to get a swollen mouth and ulcers when i first started taking methotrexate took folic acid tablets and settled down just used to make me feel alittle sick for the fist few days
hope thinks get better soon DEE

JanW
02-12-2010, 01:10 AM
I started with the folic acid tablets about a week before I started the mtx and haven't had a problem so far. My doc prescribed the folic acid primarily for nausea but said that he would be checking my mouth closely for ulcers on my biweekly visits.

jola57
02-12-2010, 04:05 PM
I think I have been on mtx since september now and I have always taken folic acid and no sores at al.

JanW
04-14-2010, 05:28 AM
Hi guys -- got good news from my rheumy: my liver results are completely normal so I was cleared to take the therapeutic dose (15 mg) of methotrexate. He suspects that the spike before was because I was still using NSAIDs and (more importantly) having a couple of drinks on the weekends when I took the first challenge. I took the dose yesterday I'm wondering from some of you more experienced folks -- how long before you started noticing any (positive) difference in the way you feel? I only have ankle pain (even my nasal crusting seems to have gone away) so I'm trying to gauge when that might feel better, keeping in mind that I'm not on any prednisone.

elephant
04-14-2010, 07:48 AM
Sounds very promising Jan. If your nasal crusting is going away, that is a great sign. If you not wheezing and breathing better....heck...lets have a party!! I know we all need to celebrate!

JanW
04-14-2010, 09:12 AM
All of my wheezing and breathing problems were caused by my stenosis, which turned out to be a very easy fix!

Sangye
04-14-2010, 10:58 AM
I've heard it takes about 2 months for mtx to really start working. I'm with Elephant-- with those major symptoms gone, time for a party. :)

jola57
04-14-2010, 03:41 PM
Yeay JanW. Mtx is a maintenance drug as told to my by my rheumy so you may not see a big difference in your ankle pain. But it may keep you happily free of all the other nasty symptoms.
I am on 10mg (down fro 15 because of liver enzymes being up) since September and down to 7mg pred and doing good. My ankles still swell up and my left looks and feels twisted, one of these days I will see an orthoped about it. I don't even feel that tired anymore, just a little. So this is good news if you are on 15 and no pred. Hurray.

Col 23
04-14-2010, 08:11 PM
Does sound like we need some bells and whistles, chocolate cake, strawberry daquiris, lemon cheesecake, champagne and music
and and..... getting carried away. All the best J and J.
cheers Col 23

elephant
04-14-2010, 08:45 PM
I'm with you on all of that Col and sounds like your a party planner! :)

Brooke
04-15-2010, 01:09 AM
Yay! Glad things are working :)

Coco
04-16-2010, 02:21 PM
All of my wheezing and breathing problems were caused by my stenosis, which turned out to be a very easy fix!

I'm curious, what was the easy fix for stenosis? I"m battling it. Three surgeries so far and it grows back, although slower. I'm not taking any drugs, and have not been positively diagnosed with WG. 2 surgeons think I have it. A Rheumatologist thinks I have it. Not known for sure.

elephant
04-16-2010, 07:54 PM
Coco my pulmonologist said if I started to show signs of sub glottal stenosis that he could dilate the area that is narrow. I personally would see Jan's doctor since he did a great job on her stenosis.

Sangye
04-16-2010, 10:53 PM
I agree with Elephant about seeing Jan's doc. I hope she'll see your post and answer it. She's educated herself quite thoroughly on SS and will be able to help you.

JanW
04-16-2010, 10:57 PM
Hi, guys --

My doctor, Robert Leibovics 212 262 4444, was a wonderful surgeon and one of three in the world who correct SS in his particular way. He was trained in the technique at NIH. To describe it he goes in and makes incisions at the "points of maximum tension" so that when the skin snaps back it opens wide (picture stretching a rubber band and cutting it). So he makes a bunch of incisions like this in the scar tissue and then puts a balloon in and dilates for as long as he can stop your breathing (anywhere up to three minutes and when your pulse ox goes below 92 they take it out). Then they coat with myomicin (chemo) and pred, put in a breathing tube and then wake you up. You stay in the hospital overnight (on painkillers, pred and antibiotics) and then when you get out it's without any medication. It was pretty terrific. I will have to have the surgery again -- he has suggested that in as little as 3 to 4 months I'll need a 'touch up' but he has had patients go as long as two years (the woman he was operating on after me -- my husband met her in the waiting room). My rheumy says that he keeps sending him letters say how well the surgery went and how I was such a great candidate -- I'm 44 and have minimal WG symptoms and am otherwise in good health.

So when I say it was a quick fix, I luckily have good insurance that pays for this procedure, live close to the expert on SS in the US and there is no discomfort with the surgery. I know I will have to have it done maybe one or two more times, but that's nothing like what some people on this board have been through. My surgeon would say that no real WG patient has had this done only once. Because my biopsy didn't show WG, he works with my rheumy's diagnosis (which is based on ANCA, P3 and I have a saddle nose -- lucky me) My windpipe as about a 3 and should have been an 8. My surgeon has operated on people as low as a 2. He hasn't trached a patient in 10 years, and has never lost a patient in surgery (and some have performing this surgery -- the #1 complication is death).

How have your surgeries been performed Coco? What do they think you have if not WG?

pberggren1
04-17-2010, 03:10 AM
Coco:

What symptoms do you have right now and have had in the past?

Did you ever had a biopsy?

Have you had sinus, lung or kidney involvement?