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smurfette

Botox for gastroparesis

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I am new here. This forum seems to have a wealth of knowledge available and I appreciate all of the support that is available here.

I was diagnosed with CREST in 1998, and have lots of fun complications with my esophagus, but now I have also been diagnosed with gastro paresis (one word or two?). My doctor mentioned that one of the treatments involves shots of botox. Great for the face, but I never heard about it for gastro paresis. It is clearly an "off label use" and therefore considered experimental. Has anyone ever had this? If so, did it work? How long did it last? What were the side effects? Was it worth doing? I have had problems with the two other treatments recommended - Reglan (the med did not work at all!) and Erythromicin (I am highly allergic) and so Botox seems like the only option besides suffering.

 

Thanks in advance for sharing any knowledge and experience you have.


Smurfette

 

Chocolate, It isn't just for breakfast anymore!

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Welcome to the ISN Forums, smurfette. I look forward to getting to know you better. I am sorry to hear about your problems with gastroparesis (all one word). Here is a link to an article from MayoClinic.com on Gastroparesis (the Treatment section).

 

Under Emerging therapies it says:

 

Botulinum toxin (Botox). Once used exclusively to treat migraines and wrinkles, botulinum toxin is now being tried for a variety of problems, including gastroparesis. In trials, researchers have found that Botox relaxes the pyloric muscle in some people, thereby allowing the stomach to release more food. The benefits are temporary, however, and more studies are needed to determine the overall usefulness of this treatment.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Welcome to our group Smurfette. I also have gastroparesis though the Reglan is working great for me. I'm sorry to hear that it isn't working for you. There are other medicines that might help you but, they aren't sold or approved yet in the United States. I will have to read up on some of the botox treatments. A short term fix isn't a real fix. I hope you find something that will work for you.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Dear Jefa and all who so kindly answered my post,

I appreciate all of the warm welcoming wishes. Thank you all. CREST and scler is no fun and it is much appreciated to have people out there who understand and offer knowledge and support! Doctors often give facts and meds, but not much in the way of warmth and leave a lot of blanks in their explanations.

Botox was the only remedy posited to me and I have many concerns - only one of those being, as mentioned, that it is a poison and that we do have compromised immune systems. If someone said that it really worked well and for a long time and did not have to be redone for an extended period of time, then maybe the gamble would be worth it. I have not heard about other drug remedies. What are they? Are they safe? I understand that they are not approved here, but technically neither is Botox for this off label use.

Where these drugs rejected here and if so, why? As you can see I have tons of questions, but this gastroparesis is detracting a great deal from my quality of life - my esophagus is already trashed so this was just one more straw in my body's battle with food. The really annoying thing is that I can't seem to lose weight!

Enough complaining - so many others have it much worse. I really just want to know if the botox is the way to go or not. If so, maybe I can talk the doctor into doing my forehead at the same time - I have a few lines I would not miss.

Again thanks for the warm welcome and the information.


Smurfette

 

Chocolate, It isn't just for breakfast anymore!

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