I start Rtx again on Wed

[drz]

I had a pretty good day today. Still have some fatigue, stuffy sinus and ears, but was able to spend a good chunk of time with each of my kids. That makes me happy. Does anyone else get mouth sores from Rtx?

Sores in the mouth are common with Wegs. Usually they come and go by themselves but a dentist can prescribe a rinse to help with them. Good dental hygiene is necessary with Wegs to avoid infections and other problems. I was also told to avoid using toothpaste with SLS chemical which is found in most toothpastes but some of the organic or ones found in health food places omit it.

[mrtmeo]

Swishing with salt kills pathogens and helps heal sores in the mouth, but it can sting if they are raw.

[LisaMac]

Good idea. This happens every time I get Rtx.

[mrtmeo]

Good idea. This happens every time I get Rtx.

Do they give benedryl, pred or dexamethasone and tylenol with each infusion?

[LisaMac]

Yes, they do. This time isn't too bad though, I've been out of the house every day.

[MikeG-2012]

Does anyone else get mouth sores from Rtx?

I had them from the Prednisone. they called it "thrush". Had an antibiotic rinse NYSTATIN to get rid of it. Took about ten days to completely go away.

[LisaMac]

Nah, this isn't thrush. It's like ulcers on the roof of my mouth.

[Palmyra]

Nah, this isn't thrush. It's like ulcers on the roof of my mouth.

The ulcers are likely apthous ulcers. For differential, apthous ulcers do not form on tissue that is attached to bone (the 'hard' palate or attached gingiva). If they are on the soft palate, cheeks or tongue they are likely apthea and pretty common with chemo.

Warm salt rinses (1:8) may help, as may mild baking soda rinses throughout the day, which helps neutralize the pH of the mouth. You may want to avoid acidic foods and strong mouthwashes/toothpastes (as prev mentioned, those w/ sodium laurel sulfate or high alcohol content). Cinnamon can also be an offender. Topical steroids (lidex) can help heal if they get bad.

I've been off site for a very long time as my daughter had been in remission. But like you, she is flaring (after a 3yr remission) and will likely be back on RTX. I'm hoping she will join the ranks here.

Best of luck to you with your treatment. I hope you get a positive response with minimal side effects.

~Jane

[LisaMac]

Quick update, since I haven't been on the forum in a while. Any free time I've had I've either slept or hung out with my kids.

I had my 4th and final Rtx infusion 9 days ago. We kept having to postpone infusions due to infections. I believe, though I don't have labs to back me up yet, that I'm doing much better. All the nasal and ear stuffiness is gone, yay! For my body that's always been the first indication that my Wegener's is active again. Labs always confirm my suspicions. I have gotten some energy back and have had some wonderful moments with my family. I'm always thankful to make memories that don't involve Mom lying in bed, lol.

I see my Rheum on Monday for labs, but feel very confident that the Rtx has helped me once again. I will update as soon as I know anything for sure.

Thank you all for your support and may we all reach our goal of a drug free remission!

(((Hugs)))

LisaMac

[Debbie C]

Glad to hear you are feeling better Lisa, hoping your labs prove the same. Enjoy the family !