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View Full Version : I start Rtx again on Wed



LisaMac
02-16-2015, 05:24 AM
Please keep me in your thoughts and prayers as I begin this new round of treatments. I have been pretty much sailing along for over a year. At this time my oldest child, well he's 23, been married for 3 1/2 years and has a 17 month old son, and his family, has been staying with me. He just got out of the Marine Corps and needed a place to stay while they got jobs and he started college. My 19 year old daughter also came to stay with me to save money to move to Hawaii this summer. I also have a high school Senior and an 8th grader still at home. I say this because my fairly germ free bubble has been invaded, lol. While I absolutely LOVE having them all here, especially my Grandson, it seems that someone is always sick and I'm nervous about being on Rtx with all these people here.

Why, yes, of course I'll attach a picture of my Grandbaby!

mrtmeo
02-16-2015, 09:22 AM
I will be praying for you!
I keep my mom's and my vitamin D levels within the optimum range of 60-80ng/mL, so that we don't get sick.

Pete
02-16-2015, 09:51 AM
Just practice good hand hygiene and keep your distance from the germy ones, and you should be fine.

Vicki
02-16-2015, 10:25 AM
You are in my prayers the grandbaby is adorable

whatthewhat
02-16-2015, 12:43 PM
Lisa, where do you do infusions?

LisaMac
02-16-2015, 01:17 PM
At my Rheum office in LaPalma, CA. He mostly sees RA pts so he has x-Ray, bone scans, a lab tech, and an infusion center.

LisaMac
02-16-2015, 01:18 PM
Mrtmeo, how do you keep your Vit D levels up. I can't seem to do that?

annekat
02-16-2015, 03:12 PM
Lisa, your grandson is a beautiful child and looks like a very happy one! Good luck with the RTX, just use common sense and if anyone gets sick, lay down the law and keep them in a separate room away from you. I live alone but am out in public a fair amount. I wash hands with soap and water a lot and use hand sanitizer frequently. I think washing your face throughout the day with soap and warm water would be good, too, as well as dapping some hand sanitizer around your nose and mouth to try to zap any germs trying to enter that way. I have hardly gotten sick at all the whole 4 years I've been on immunosuppressants, but did get a moderate cold once that turned into a moderate flare that was easy to treat with an adjustment in meds. That was the only incident. But I've never taken RTX and don't know if there is any difference in susceptibility risks. When you took it before, did you get sick at all? I think it could work out fine with your kids and grandchild there, they can help you with stuff around the house. Best to all of you.

LisaMac
02-16-2015, 03:14 PM
Thank you!

mrtmeo
02-17-2015, 04:01 AM
Mrtmeo, how do you keep your Vit D levels up. I can't seem to do that?

Doing regular tests for 25 hydroxy D every 3 months and supplementing by weight.
When in the sun in the summer, I don't supplement.
My mom is never in the sun, so she gets supplements daily.
Vitamin D toxicity is always possible, so it is important to test regularly.

LisaMac
02-17-2015, 04:12 AM
Thanks for the great info!

Best to you and your mom. She's lucky to have you.

Lisa

LisaMac
02-20-2015, 06:46 AM
Whatthewhat, my Rheum has other Wegener's patients and one of his office worker's son has it as well. News to me!

Debbie C
02-20-2015, 11:49 AM
I will be praying all goes well with your infusions. Are you getting a round of 2 or 4 ? Well one good thing if you don't feel well afterwards you have enough people to help you and make yours meals !!! Take advantage of it while you can,cause they will be out of the house before you know it. Your grandbaby is a cutie and I am sure not the least bit spoiled !! and your daughter is moving to Hawaii,HOW NICE.What will she be doing there ?

LisaMac
02-20-2015, 12:09 PM
I will be getting 4 weekly infusions since its been almost 18 months since I last had any.

Actually, both of my daughters plan to move to Hawaii this summer. They will be 20 and 18 by then. My older daughter works for Old Navy and Carter's so yes, my grandson, Jackson, is VERY well dressed, lol! The girls plan to use Coogan money they've collected from acting jobs they've done since they were young, to get there and get settled. My older daughter, Moriah can transfer both of her jobs to the same shopping center, which conveniently, is near the college. Hannah shouldn't have too difficult a time finding work. They plan to work for a year to gain residency there and then go to school to be Respiratory Therapists. That was what I did till I quit to raise my kids. Rt's can make around $40/hr for about 2 1/2 years at a JC. No student debt, just straight into a job. They're both very adventurous young ladies, but it kinda freaks this mama out having them so far away.

Thanks for asking and prayers are always welcome, I'm a big fan!

((Hugs))

Lisa

LisaMac
02-20-2015, 12:20 PM
Here we are: Caleb is the oldest at 23, below him is his wife, Maggie with Jack-Jack, then Jared, my 13 year old (please pray that his siblings allow him to see 14), below him is Hannah, then me, and finally Moriah. I just show these so you know what I'm fighting for.

Debbie C
02-20-2015, 12:30 PM
What a beautiful family you have Lisa ( they have their mamas looks !) You are a very lucky lady to have raised such good,hard working kids, I hope the best for all of them . I just noticed that today is Thurs.,did u have your infusion yesterday,if so how are you doing

LisaMac
02-20-2015, 12:33 PM
Yes I did, I'm resting today but apparently, according to my kids, I look better. I think they're just trying to be nice, but I'll take it. I just feel wiped out with a headache. Not too bad so far. Although, after raising this brood I'm gonna milk it as much as I can, haha.

Debbie C
02-20-2015, 12:45 PM
Glad you are doing o.k. Yea,I would milk it as long as you can !! Take care :thumbsup:

LisaMac
02-22-2015, 07:42 PM
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?

Pete
02-23-2015, 01:25 AM
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?

Sounds like you may be having some sort of allergic reaction. Give your doc a call...

drz
02-23-2015, 02:38 AM
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
02-23-2015, 09:41 AM
Swishing with salt kills pathogens and helps heal sores in the mouth, but it can sting if they are raw.

LisaMac
02-23-2015, 09:47 AM
Good idea. This happens every time I get Rtx.

mrtmeo
02-23-2015, 09:52 AM
Good idea. This happens every time I get Rtx.

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

LisaMac
02-23-2015, 09:55 AM
Yes, they do. This time isn't too bad though, I've been out of the house every day.

MikeG-2012
02-24-2015, 02:02 AM
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
02-24-2015, 02:28 AM
Nah, this isn't thrush. It's like ulcers on the roof of my mouth.

Palmyra
02-24-2015, 03:00 AM
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
04-09-2015, 05:01 AM
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
04-10-2015, 10:13 PM
Glad to hear you are feeling better Lisa, hoping your labs prove the same. Enjoy the family !:thumbsup: