Getting worse? Need some reassurance...

Treatments, possible treatments, unsubstantiated/unproven treatments. Consult your doctor first.
skizamii
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Getting worse? Need some reassurance...

Postby skizamii » Mon Jan 11, 2016 11:40 am

So I was holding my own until Friday when my doctor had me switch to Dificid. I took one dose at 12:30 pm Friday. Within 2 hrs I was in excruciating pain, couldn't keep my eyes open, was so weak I could hardly walk, got nauseated, and just barely made it home. I collapsed on the floor at home and it has been bad ever since. I've got cramps, bloating, pain that doesn't respond to anything except Norco, febrile weakness, dizzyness, fatigue, loose stools, can't eat or drink anything without getting nauseated/body aches, head feels full like I'm going to pass out, vision is going blurry/seeing stars, and was in the ER yesterday. The ER said it isn't likely that Dificid set off the c. diff and it is more likely a reaction to dificid, but it sure feels like c. diff ramped up.

Why would Dificid give me such terrible symptoms so suddenly that aren't going away? It kicked c. diff for me last May...

Lisa33
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Re: Getting worse? Need some reassurance...

Postby Lisa33 » Mon Jan 11, 2016 11:55 am

I am so sorry to hear how ill you are feeling. I do not have any experience with Dificid, so I cannot answer to the side effects, but it sounds dangerous to me to continue a drug that is making you feel this terrible. You need answers ASAP from your doctor. You are scheduled for the double FMT soon, right? Can they switch you to Vanco until your FMT instead of the Dificid? You weren't feeling this bad until you started the Dificid, so there must be a connection. My heart really goes out to you. You have really been through the mill with this. I am praying that the double FMT finally cures you. I have hope that it will be the answer. In the meantime, you need to get answers ASAP on how to proceed because you cannot possibly stay feeling this way. From what you are describing, I would think you should be in the hospital.

Just to add, it is somewhat strange that you tolerated Dificid in the past though. Only the doctor would know why this is happening to you now. For what it's worth - I know it's two totally different drugs, but I tolerated Flagyl the first time around ok, but the second time, it was like poison in my system. I had terrible side effects, including extreme nausea, no appetite, terrible fatigue, brain fogginess, oral thrush, etc. It made me sicker than the c-diff. I got through 9 days of hell, until I was switched to vanco. I was fine on vanco. I have no idea why the second time around, I reacted completely different to it.

I'm so sorry and sending you prayers and well wishes,
Lisa

TowerL
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Re: Getting worse? Need some reassurance...

Postby TowerL » Mon Jan 11, 2016 1:53 pm

Lisa is right! You should not be on a drug that makes you feel this bad. I had a rough start with Dificid (did not get rid of c diff but took away pain) but nothing like this. I had mostly constipation and some discomfort in the beginning. I had a reaction to vanco and still am somewhat sensitive to it (on it again now) but nothing like what you are experiencing. Do not just accept it, I was told I could not possibly be sensitive to vanco as it is not absorbed in blood but I knew it was the drug. Talk to your doctor.

skizamii
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Re: Getting worse? Need some reassurance...

Postby skizamii » Mon Jan 11, 2016 2:15 pm

I called my doctor, waiting to hear back. I am back on vanco, there is no way I was going to take another dificid after the immediate reaction I had to it.

The thing I'm worried about is I only took ONE dose and that was on FRIDAY at noon. The half life is 12 hrs, so assuming it got into my bloodstream, it should be out by today at noon (6 half livesx12=3 days) So I'm freaking out thinking that Dificid set off c. diff and/or caused a different bacterial/viral infection. I just don't know how that could be as I haven't been on it since last May and back then it cured me. It seems absurd that this c. diff would have developed resistance to Dificid. I've been on vanco on and off again since last February, that would be a more likely candidate for developing resistance. Sometimes antibiotics cause body aches/etc. when they are working, so is it possible this is just an immune response to my body assisting the drugs? My poo is loose/greasy but no D.

I agree with TowerL...doctors say this stuff isn't absorbed into the blood stream. But I react badly to vanco as well and there are numerous studies that show toxicity to oral vanco including red man syndrome. It is much more rare than IV vanco, but it is happening. The other big difference for me is that when I was on Vanco/Dificid before and not having issues I was on Seroquel (heavy duty anti histamine) and Klonopin. So those two meds could have been masking the symptoms if there was a histamine release/allergy.

Thanks for all your help and support, it means a lot...

NanciT
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Re: Getting worse? Need some reassurance...

Postby NanciT » Mon Jan 11, 2016 2:37 pm

I am so sorry you are going through all of this, contacting your doctor and stopping the Dificid is the only answer. If you do not hear back from them, call again and make sure to tell them you had a terrible reaction to Dificid and ended up in the ER.

MY ( Past not current) GI told me ALSO no one has any complaints about Vanco...other than me. Since then, if you look it up there are now many side effects listed. My point is that everyone is different, I believe you can do well on any medications and later have issue's with them.

I was also on Dificid for 10 days with no issues. Then had to go back on it for a long period of time doing a pulse/taper dose. I felt terrible with the second round, ended up in the ER and the MD looked it up and said" This drug is causing your problem".
I hope they get back to you today, and you can get the FMT and be on your road to recovery very soon!
NanciT

roy
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Re: Getting worse? Need some reassurance...

Postby roy » Mon Jan 11, 2016 3:35 pm

Did you switch from vanco to dificid because you were getting worse?
Reaction to a med normaly takes a lot more than one dose.
Anything might be possible but if just one dose of dificid created such an instant reaction it should be reported to the FDA.
How many days before the FMT will you be stoping vanco?


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