Infergen side effects

Hey All,
My husband is on his 4th month of infergen treatments. Recently his tongue has been hurting and it has grooves in it. Any idea if this is a side effect?
Any info will help.

Thanks
Marcy

[Bill1954]

Hi Marcy,

Interferon of all stripes is hard on the body, and the mouth can take licking too :o). I developed sores and a hard plaque on my tongue; I imagine it’s similar to what your husband is dealing with. He should mention it to his doctor for sure. If nothing else, the doctor might Rx ‘magic mouthwash’; this is a swish ‘n swallow formula that is concocted by the local pharmacy. It contains Maloxx, lidocaine, and benadryl, and can provide near immediate relief. Most of the mouth sores we get straighten out shortly after treatment terminates.

Best to both of you—

Bill

[franke566]

Bill is correct but I am curious about infergen.  Was your husband resistant to Interferon-Riba? I WENT TO A SITE AND THEY ARE DOING 60 STUDIES ACROSS THE NATION USING LOZENGES INSTEAD OF INJECTION to study this way of delivery and are asking for IA Genotypes who have taken long Tx using standard Interferon and had to stop for one reason or another.  Does your husband wear dentures or have a bridge?  I developed an allergy to certain things and one of them was a dental adhesive for a side molar and this adhesive caused me some discomfort and did my tongue exactly the way you describe your husbands.

[marcycw]

No, actually he took interferon once and had to stop due to losing our insurance. My current insurance would only pay for Infergen. I don't mind though because after his 2nd month he became undetectable. So it worked. As far as the study goes, im sure he would have LOVED to have been a part of that.
He doesnt wear dentures or have any adhesives. Im going to call the Dr and see if they can get him that mouthwash Bill talked about.
Thanks for the quick responses.
I appreciate it greatly!
Marcy

[franke566]

I thought so!  What I read about Infergen said that it is used with people who already Txd or had to stop Txing.  Bills a good guy and wouldn't steer you wrong!

[nygirl7]

Mary,

Infergen IS a form of interferon.  The tongue bumps come from a reaction to the interferon so.....Consensus Interferon (Infergen) is what is causing them.

Infergen can be extremely successful but it sure is tough. We had a member who recently underwent 72 weeks of the stuff and honestly I think it made my 72 weeks of interferon look like child's play.

If your husband needs something about more than interferon - it can be hugely successful but it is not easy.

The good news (from one who is experienced and knows) is that the tongue bumps will go away right away once the interferon is out of his body. I had them pretty drastically and two weeks after tx they were gone for good.

hang in there.

[marcycw]

Yes Its Marcy, thanks :)
Yes, I intend to make him an appointment right away.
Thank You.

[mikesimon]

Hey, I agree completely - Bill is a good guy and he smart and knowledgeable too.
Mike

[Bill1954]

LOL!

[Mandy227]

Does the artificial or direct sunlight affect me while taking this medication?

[Bill1954]

Hi Mandy,

Some patients I here have reported photosensitivity as a result of using interferon/ribavirin therapy. Caution is probably best until you discover how this might affect you. Limiting sun exposure and applying sunscreen might save you additional misery this summer,

Bill

[HOPIESOLIZ]

I HAVE BEEN ON THE INFERGEN AND RIBASPHERE TREATMENTS FOR A FEW MONTHS.WAS ON THEM FOR  4 MONTHS AND WAS HEALED BUT IT CAME BACK NOW AND HAVE TO TAKE INJECTIONS 3X WEEK NOW FOR A YEAR  THE PAIN IS UNBAREABLE THAT I WISH AT TINES I WERE DEAD,MY LIPS GET  SOARS MY LUNGS FEEL LIKE THERE SO TIGHT I CANT BREATH AND CANT GAT OUT OF BED FOR A WHOLE DAY.WHAT CAN I DO TO MAKE THE PAIN A LITTLE MORE BAREABLE