Need some words of encouragement

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lrose14
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Joined: Wed Apr 19, 2017 7:13 pm

Need some words of encouragement

Postby lrose14 » Tue Jul 11, 2017 3:04 am

Hello everyone,
I'm back with an update and feeling so hopeless. I have to vent since I sound like a broken record to my husband. This whole ordeal has me feeling really blue that I'm considering going to a psychologist. I'm now coming on my 8th day of taking Vanco and I was quickly reminded of why I was incredibly nervous about taking this stuff. I feel just awful on these meds, the dizziness, and fatigue are just the worse, the dizziness awful. I can handle the mild ear ringing. I've increased my fluid intake even more (which already was a lot) and still no relief. I contacted my GI, the one that supposedly has a wealth of knowledge and works in our wonderful
Med center in Houston, first thing Monday morning to explain my symptoms only to be told that vancomycin is not absorbed through the system so this must be due to something else. Really? I find it odd that I did not feel this way before starting these meds and remember feeling the exact same way back in March while on it as well! I was left so weak with major reflux issues, which now I believe Vanco may have triggered.
I was so desperate that I reached out to my nearby GI, the one who I had originally been going to and he advised to cut down to Vanco 3x/day. I have a follow up with him on Wednesday.
I was so tempted to go to the ER today but will wait it out and hope that these symotoms subside.
I'm frustrated, so worried that CDiff
will come back even stronger if I stop meds at this point and feeling like I will never get rid of this disease. This is so scary to me and just needed to vent.

sophie
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Re: Need some words of encouragement

Postby sophie » Tue Jul 11, 2017 11:18 am

Hi, I understand what you're saying. I took Vanco in the beginning and had to stop because I felt horrible when I was on it - like i zombie, couldn't get cmfortable, pains throughout my body and just felt horrible. The thinking was it was just a spychological reaction. It wasn't. ER doctor told me to stop for a day or two and sure enough it stopped. Unfortuntely a coule weeks later I tested positive again and went back onto Vanco, it took 2 doses and my body reacted the same. So I stopped. I ended up in the hospital with C-Diff and Diverticulitus. I worked with an ID who undersstood my issues and fought and got me Difficid. That was in April. On July 23rd I will be 3 months post c-diff. Difficid was the only thing that worked for me without causing side effects. I hope your appointment goes well tmorrow. Ask about Difficid, if possible. Don't let anyone tell you you're symptoms shouldnt be happening, because you know how you feel. Good luck!

lrose14
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Posts: 13
Joined: Wed Apr 19, 2017 7:13 pm

Re: Need some words of encouragement

Postby lrose14 » Tue Jul 11, 2017 11:32 am

Thank you so much for sharing your experience with me. It's reassuring that I'm not the only one that can't handle Vanco and even more so knowing that you are now 3 mo free of CDiff! Each day is worth celebrating!! I know I'm not crazy and just couldn't believe the response that I received. I actually stopped taking the meds yesterday afternoon. I just couldn't handle it anymore. It was awful and I couldn't stop the tears from taking over me, it was a rough day.
I will definitely ask for Difficid. I just pray that I'm able to get it with no insurance issues and most important that I'm able to tolerate it better. Now, I'm just worried that I may have just caused more damage with CDiff having a party in my gut but I seriously just need to stop worrying...it's exhausting.....

NanciT
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Joined: Thu Sep 18, 2014 12:01 pm

Re: Need some words of encouragement

Postby NanciT » Tue Jul 11, 2017 12:01 pm

Some do have problems with Vanco, since you are going in for an APPT with the GI, ask for Dificid. I would write down all the symptoms you are having and bring the list in. I was told the same thing, Vanco causes no issues but that was in 2014 and there is a lot more information about side effects now.

Make sure to have plenty of fluids with electrolytes if the diarrhea has continued.

There is a GUT/Emotion relationship that causes so many of us to struggle dealing with this illness. I high recommend the counselor

Hang in there, you will beat this!

NanciT

beth22
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Re: Need some words of encouragement

Postby beth22 » Wed Jul 12, 2017 2:07 am

Vanco can cause side effects. A friend of mine is allergic to the pills. She had to take Flagyl for her c diff and then get FMT because a couple of doses of vanco and she broke out. It affected my hearing and it made me feel like a zombie the first few days on it. I also felt nauseated and lightheaded. I now have a bottle of Dificid with me. I thought I would have to take it last year because I tested positive after having IV antibiotics in the hospital and we were going on a trip. My GI prescribed it and I paid $60 co-insurance. I wound up not taking it, but if I have an active infection again, I will take that. There is also an assistance program that is listed in the CDI section for Dificid in case your insurance won't cover it.

cnatra
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Joined: Wed Jan 25, 2017 9:11 am

Re: Need some words of encouragement

Postby cnatra » Wed Jul 12, 2017 8:58 pm

Will your local GI consider a Dificid prescription ?

Merck offers copay assistance for Dificid .
My local pharmacy copay was still steep so I used the coupon but my mail order program was cheaper by a factor of 10.

Hang in there !!

Ril
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Joined: Sat Oct 27, 2012 2:45 pm

Re: Need some words of encouragement

Postby Ril » Thu Jul 13, 2017 11:44 pm

The majority of people do well on vanco but for those who do not Difficid is definitely the way to go. Please describe your problem and ask your dr for a prescription for it. It is a superior medication for c diff in many ways anyway so there is now good justification for you to take it.

Rita

maxny1
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Re: Need some words of encouragement

Postby maxny1 » Fri Jul 14, 2017 1:57 am

Also, some insurance plans that don't usually cover Dificid will cover it if the provider states that it's medically necessary, ie the patient has a negative reaction to the Vanco.

Bobbie
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Joined: Sat Aug 06, 2005 8:00 pm

Re: Need some words of encouragement

Postby Bobbie » Sat Jul 15, 2017 3:36 pm

Irose14

I was on Vanco for years and it enabled me to work, travel, and lead a somewhat normal life.
I was also was on it by IV for osteomyelitis (was also taking oral Vanco at the time).The IV form usually causes the most problems -- loss of hearing and kidney damage. Others on the sites, however, have complained of other side effects from the oral form - brain fog, nausea, etc. Everyone is different.

Do ask your doc about dificid. Some also have problems on it but it has helped many on the site - as has Vanco. If you have a problem with paying for dificid, I believe th company that makes it has a rebate program. See CDI.

I had a c diff for years and "beat" it (cross fingers).You will, too.

Best of luck.

Drake
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Joined: Mon Jul 17, 2017 11:01 am

Re: Need some words of encouragement

Postby Drake » Mon Aug 07, 2017 3:42 am

I too had a bad reaction to Vanco. My joints swelled and hurt so badly and when my neck started to swell I got really scared and went into the ER and they told me I had red mans syndrome. I took Vanco in liquid form for cdiff the very first time I had it after flagyl didn't work. Then they gave me dificid and I never had any reactions to it. I hope you feel better! Hopefully you can get dificid.

OCmama
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Re: Need some words of encouragement

Postby OCmama » Mon Aug 07, 2017 10:29 am

Drake-

I had Redman Syndrome too! Crazy stuff. Hope you are having a good recovery.


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