Rituxan and Gastroparesis

[gurs]

We'll, I saw my rheumy yesterday, and she said I should give Rituxan another try. I tried it last time around 5 years ago, and had gone through it 1 time before that. I didn't notice any changes in my dryness at all, but I think it helped me with some of my neuro issues, and also with my hair loss and probably some joint pain. I know the last time, I only did the one infusion, and my doc said its really important to do both infusions (2 weeks apart) to get the full benefit. Im much worse health wise than I was 5 years ago too. My gastroparesis is a nightmare, and joint pain, fatigue, etc are at an all time high. Im wondering if anyone that has had rituxan, noticed a change in their neuro issues?

Im going to wait around a month to make sure I get some other health issues addressed first.

thanks

Gursie

[Sharon]

Hi gurs, why didn't you continue with the Rituxan to begin with?

[anita]

You have had severe gastroparesis for a number of years.  Please ask your doctor about SIBO (small bowel bacterial overgrowth)...it is something those with severe gastroparesis can get and it will make you miserable.  There is an EASY treatment with a special antibiotic (that doesn't enter blood stream---only works in GI track) that can help.  It turned my life around when I struggled with my GP for years.  The antibiotic is called Rifaximin.  Many doctors don't consider SIBO when GP is bad, but it doesn't hurt to bring it up and even try the antibiotic for a week to see if it helps.  There isn't good testing for SIBO, so many doctors just try the treatment for a short period if all other things have been tried to help the GP.  Can't hurt to ask.

Good luck Gursie.  Try the second treatment to see if it helps.

[gurs]

I cant remember why I didn't make the 2nd infusion..I know I must have had some infection going on (probably dental or viral) and then my life has just been crazy the last few years. I had to move 3 times and I knew that rituxan would knock me out for at least a month or two.

Anita, thank you so much for the info on Rifaximin..will check with the doc about it.

Gursie

[SjoDry]

Gurs,

Both Andrea (on this board) & I go to the same  G.I. motility specialist at the Univ.of Pittsburgh. He prescribes a supplement for gastroparesis that has helped both of us.
You can both purchase & see the reviews on Amazon.

amazon.com/Iberogast-LARGE-SIZE-100ml-Dyspepsia/dp/B00I2LFSQK/ref=sr_1_2_a_it?ie=UTF8&qid=1458666982&sr=8-2&keywords=iberogast

You don't see too many docs promoting natural supplements, but this proprietary product seems to help a lot of people.

Hope you get some relief soon.
SjoDry

[warmwaters]

Just finished my first Rituxan infusion last week, and will do another next week. Don't have a lot of feedback for you, but just wanted to say it didn't hit me as hard as has been described by others. I'm not having the flu-like symptoms. 

Fingers crossed.

[gurs]

SjoDry,

Its funny because I read about Iberogast months ago and heard good reviews on it..thank you so much!!!
Im going to order some.

Warmwaters, so glad your doing well. I guess each of us is so different on how we handle medications etc. I just
know that the slower the infusion was, the less sick I felt. How many hours was your first infusion? Im also assuming
that they followed the Pre-med protocol too? I think it was benedryl, Medrol, Tylenol? cant remember what they use..

Thanks again..

Gursie

[irish]

Another thing to keep in mind is the fact that some bacterial infections of the colon can be anerobic or ones that grow without air. These bugs respond the best to Flagyl. I have had a couple of episodes of these. I had stomach issues about 11 months in 2015 and had testing and nothing found. I finally went to my primary and told her that I thought I needed to take this med. I had a colon thing many years ago and that was the drug that made the symptoms stop. Good luck. Good to hear about that Iberogast. Never kow when one will need a different me. Irish

[ohiolady]

I shared with Andrea when I started taking Iberogast and have been taking it for three years.  I still have to take Domperidone for gastroparesis but Iberogast has helped a great deal. Gastroparesis is awful!  My heart goes out to you.

I hope you get some relief soon.

Anna

[Linda196]

Please remember to use the Amazon or smiles.Amazon links on our home page http://www.sjogrensworld.org/ when you shop Amazon, and help maintain this site in the process.

[gurs]

Ive also had serious bouts of yeast in my colon, and with my immune deficiency disorder, sure I have probably some bacteria and fungus growing. I take a lot of natural supplements for this and tons of probiotics and try to follow non-sugar diet.
Ive had the gastroparesis symptoms since I was a child, along with my other SS issues. My hormones are out of whack since my hysterectomy 10 years ago, and I know they play a huge part in all of this. I was surprised to learn about Hypothryoid and gastroparesis connection too?

Im going to try things that all of you recommended. Thank you again for taking the time to respond. You guys are truly
the best!

Gursie