Attempt 4 now with Alinia

Treatments, possible treatments, unsubstantiated/unproven treatments. Consult your doctor first.
JustStop
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Attempt 4 now with Alinia

Postby JustStop » Fri Aug 24, 2018 5:45 pm

I was given clindamycin in October 2016 by my dentist. I knew after the second pill something wasn't right.

My PCP tested me and I was positive for c diff. He prescribed flagyl 250mg 3x a day for ten days. I thought I was ok despite the hell of flagyl. A couple months later it was back. PCP gave me flagyl again, 250mg 3x a day for 10 days. Kind of ok for a couple weeks and then it was back. Pcp gave me flagyl again, this time 500mg 3x a day for 10 days. It came back again. I actually ended up in the hospital last week. My lymphatic system was under assault. Swollen nodes, fever, dizzy, tingles, extremely high white blood count. The hospital tested again and I got the results... gdh positive. Im just learning what this means. I just got back from my g.i. who has prescribed alinia. 500mg 2x a day for 7 days. Does anyone have success stories about alinia? I need a ray of hope here. I'm coming up on my two year anniversary of being completely miserable.

sjvan70
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Re: Attempt 4 now with Alinia

Postby sjvan70 » Fri Aug 24, 2018 7:27 pm

Bless you heart. P
IV never heard of that medicine. My dr had me on vancomycin that didn’t work I just started DIFICID it’s a miracle. No side effects. I was better in 2 days. If u insurance won’t pay. Get Dr to do a PA or letter of medical necessities. Cost is $4000 without insurance. When my insurance finally agreed I got it for $80. Good luck. This is hell on earth for surr

NanciT
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Re: Attempt 4 now with Alinia

Postby NanciT » Fri Aug 24, 2018 9:25 pm

Juststop

It's not clear if you have a positive CDIFF by PCR? If you are positive for CDIFF, I am not sure why your GI would start you on Alinia which is a treatment for Giardia and other parasites.
The two medications that are first line treatments for CDIFF are Vancomycin or Dificid. This was recently published so if this started in 2016 Flagyl was often used first but it sounds like you were given it several time.

I would review the results with your GI to see what you are being treated for.

NanciT

JustStop
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Re: Attempt 4 now with Alinia

Postby JustStop » Fri Aug 24, 2018 10:50 pm

NanciT wrote:
> Juststop
>
> It's not clear if you have a positive CDIFF by PCR? If you are positive
> NanciT

Thanks nanci

I tested a and b negative but gdh positive. Apparently that means I do not have an infection but I am colonized with the c diff bacteria. Apparently alinia is used in these situations to control D and has been proven more effective in vitro against c diff than flagyl and vancomycin by a small percentage. There is no FDA approval for treatment of c diff but I guess there have been a good handful of clinical studies im finding. My gi seemed pretty confident in alinia but at this point ive lost all faith in doctors.

beth22
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Re: Attempt 4 now with Alinia

Postby beth22 » Sat Aug 25, 2018 1:54 am

I know back in 2008 when I first got c difficile, some doctors were giving Alinia as a chaser to vanco. Others gave Xifaxan as a chaser. I was given Xifaxan. I do know we had a couple of posters back in those days who did well with Alinia and it got rid of the c difficile. I have been positive on PCR for over two years, but negative on EIA - so like you, no active infection. My symptoms are different though as I have not had D. You could type Alinia in the search box and see if you can find the old posts. It might give you some information as to how these people did.

roy
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Re: Attempt 4 now with Alinia

Postby roy » Sat Aug 25, 2018 2:27 am

GDH positive is not a positive test.
A GDH test MUST be followed with an EIA test.
If both are positive then treatment might be needed but if GDH alone is positive the test as a whole is negative.

beth22
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Re: Attempt 4 now with Alinia

Postby beth22 » Sat Aug 25, 2018 5:22 pm

Yes, what Roy wrote is correct. The hospital lab where I test now follows all PCR positive tests with an EIA. If the EIA is negative, like mine, treatment is not recommended and they mark the test "negative." I have not treated. I do get GI symptoms sometimes and I take Pepto Bismol if needed, but I also have SIBO, so the symptoms are most likely from that.


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