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Xifaxan


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#1 cordy

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Posted 26 October 2013 - 12:54 PM

So, I was admitted to the ER towards the end of Aug. I had an appointment with my primary care physician, but had been in so much pain since 4:30 that morning I couldn't be still for an exam. It was like IBS and had been having strange bowel habits and terrible cramping since April on and off. Anyway, at the ER they did a CT scan via IV infusion and found nothing. Nothing in the stool specimen either. Saw my GI doctor 3 days later and she is assuming it is the scleroderma esophagus getting worse and moving into the intestines. She put me on 550 mg of Xifaxin, 2 x per day and then says just to do it every 5-6 weeks forever. Well, insurance turned it down as it is around $1000/14 pills. I don't want to take it and don't see any difference when I do, other than explosive diarrhea. It just seems like they're shooting in the dark. It is FDA approved it in this country for Hepatic encephalopathy, but not for treating me...she mentioned E Coli in the intestines or some flora building up due to lack of peristalsis or a slowing of peristalsis. I was diagnosed over 10 years ago, so they're just assuming the scleroderma is getting worse. Oh, I was diagnosed with cREsT then, so I guess now it's considered limited, systemic diffuse? My hands are not affected, for which I am grateful, but I do have gastral antral vascular ectasia (GAVE) Got nasty when they said I had watermellon stomach! Anyway, has anyone ever been treated with this stuff?

Second question...I don't heal from surgery as well as others; sometimes yes, other times, no. Is it safe to have a dental implant? I have been putting it off for 2 years!

Thanks all or anyone!

Cordy



#2 Amanda Thorpe

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Posted 26 October 2013 - 02:44 PM

Hello Cordy

 

Long time no hear! If you were diagnosed with CREST then you would have limited systemic scleroderma rather than diffuse. CREST is, or rather was, another term for limited scleroderma but this term has fallen out of favour.

 

There have been a few posts about Xifaxan on the forums if you want to read them, as with yourself it has been used for bowel issues. Per Drugs.com it's used quite regularly for bowel issues, referring to it as: an antibiotic that fights bacterial infection only in the intestines.

 

You're not the only person to take offence to being told you had watermelon stomach thinking it meant your abdomen was, well watermelon like! Now you know it means your stomach looks like a watermelon inside NOT out! Maybe just call it GAVE?

 

Have a read of our section on dental implants because there's no guarantee they'll be successful but you can guarantee they'll be expensive! If you do have one could you come back and share the experience?

 

Take care and keep posting.


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#3 miocean

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Posted 26 October 2013 - 04:52 PM

Hello Cordy,

 

I am sorry you are having these issues with both you intestinal tract and insurance coverage. Those with known health issues are often not diagnosed correctly because it is "assumed" the known disease is causing the symptoms. It concerns me you said your doctor "assumed." 

 

The data on the medicine says to tell your doctor of any side effects (diarrhea) and tell her of the insurance issues. It also says not to stop it without telling your doctor. Can you ask her if there are any tests to confirm the diagnosis that are covered by your insurance?

 

I suffer from GI issues and have for most of my life. They have worsened in the past ten years and it has been "assumed" they are from scleroderma. Tests are always normal. They have been worse the past few years and it has been "assumed" they are compounded by anti-rejection medications for a kidney. I just had a hydrogen breath test to test for overgrowth of bacteria in my small intestine. Here is a post to others going through the same issues where there are more details.

 

I don't know the results of my breath test yet. I don't know if it will yield any answers. One of the things I have learned and this forum has helped with is to learn to ask the right questions. Ask your doctor some questions. If you aren't satisfied, can you seek a second opinion? 

 

Keep us posted,

miocean


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#4 Joelf

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Posted 27 October 2013 - 01:07 AM

Hi Cordy,

 

How lovely to hear from you again, although I'm sorry that it's because you've had gastro problems that have worsened.

 

Thankfully, I don't have gastro involvement and have never taken Xifaxan, so I can't add to the excellent advice you've been given by Amanda and Miocean.

 

Recently I have had a few dental problems, necessitating the extraction of a tooth and quite apart from the cost of dental implants which is eyewatering, ;)  my dentist has advised me that due to Scleroderma and the medication (Alendronic Acid) that I take, dental implants are really not an option.

 

Please do keep posting and I do hope that your gastro problems will settle down and that you will soon feel much better.

 

Kind regards,


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#5 miocean

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Posted 30 October 2013 - 03:14 PM

Ha! Are you ready for this..? My hydrogen breath test came back positive for bacteria and the doctor wants to use xifaxan!

 

Like you, it would not be covered by my insurance and she quoted $1,500 for two weeks. She is going to try and get free samples for me...perhaps your doctor can do the same. 

 

We'll see how this all plays out.

 

miocean

 

 

 

 


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#6 cordy

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Posted 08 November 2013 - 09:43 AM

Thanks to all for your information. I have gone to all the different sites suggested. I have just sent an email to my primary care physician asking about the hydrogen breath test.

So, in trying to figure out my new normal I have tried different things like prune juice, more fruit and salads and a fiber supplement.

I am going to avoid use of the antibiotic as long as possible. The GI doc also said if insurance won't pay for the Xifaxan, I can use Tetracycline or Doxycycline, but they tend to cause more cases of C Diff; wonderful!  We shall see and I will let you know how things are going; too soon to tell from last 'bout with Xifaxan. I did finish the 7 days, but went down to 1 tab/day instead of 2.

Again, thanks to all who replied. I forgot how helpful and supportive this site is!

 

Blessings to all with Sclero and any other nasty disease.

Cordy



#7 Amanda Thorpe

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Posted 08 November 2013 - 03:56 PM

Hello Cordy

 

I have had about 8 courses of antibiotics this year, both oral and IV, and had an awful reaction to the last IV course, 3 weeks of nausea/vomiting so bad I did not eat, no exaggeration, and so nauseous that for 2 weeks I could not get out of bed. Just as those symptoms began to turn the awful diarrhea  and temperature hit for another 5 days. I don't wish to be gross but the odour was so revolting it actually made me vomit, there was the pain and frequency when all I wanted to do was sleep. Never again do I want to go through that. Antibiotics are great things until your body decides it doesn't like one of them! I understand the hesitation in having them.

 

I am on my 3rd course of oral antibiotics for an infected ulcer on my toe and if it does not clear up I suspect the spectre of on IV course will appear before me!

 

Take care.


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#8 cordy

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Posted 25 December 2013 - 06:58 PM

So, just to let you know it has been 10 weeks since I've taken an antibiotic. GI doc agreed with me about dropping the Xifaxin to 1/d and gave me samples for 2 treatments if necessary. I feel, relatively, normal. Hooray!
Amanda, so sorry you have to take all those antibiotics. I hope the infection in your toe has cleared up.
Miocean, wow, you have a lot going on. I hope you get good news on the lung transplant! You know, my primary care physician did what was called a hydrogen breath test and it was similar to yours, but tasted like sweet/sour lemonade. It was only to check for H Pylori, which I didn't have. I wonder what they found in you and if it is a different kind/name of breath test for intestinal cooties?
I have no new news except there is a hard lump on my collar bone next to my throat which I am having checked out on the 8th; not going to stress over it, but do tend to keep feeling it to see if it has gone down or...AWAY!
I hope all felt well enough to enjoy a very Happy Holidays today or any other holiday being experienced.
Blessings to all and thank you, again! :emoticons-i-care:

#9 Joelf

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Posted 26 December 2013 - 07:38 AM

Hi Cordy,

 

Thanks so much for letting us have an update on your treatment and I'm so glad that things are improving for you. To feel relatively normal is certainly a bonus!! :)

 

Please let us know how your appointment on the 8th goes and I do hope the lump in your throat will be no further problem for you; I know that it's almost impossible to resist feeling it!! ;)

 

Kind regards,


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#10 miocean

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Posted 28 December 2013 - 08:40 AM

Hi Cordy,

I have also been on xiflaxin for the small intestine bacteria overgrowth. I finished a 2 week treatment of 2x's a day and am amazed at how much better I feel. My abdomen is not as bloated and my bowel movements have returned to pretty normal. I feel so much better!!

 

H pylori is a bacteria in the stomach, mine is in the small intestines. SIBO is healthy bacteria from the colon that moves up to the small intestine where they do not belong and cause diarrhea, gas, bloating and cramping. It is so nice not to spend hours in the bathroom in the morning! I am also able to figure out what foods do bother me as before the issues were not resolved, even with an elimination diet. I have discover my body doesn't handle fruits and vegetables well so I only eat them in small amounts, making sure the vegetables are all cooked. 

 

Now, let's have that lump be nothing serious. It is sooo hard but learning to not stress over every little thing really helps. Otherwise we would all be over-stressed all the time!!

 

miocean


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