# interferon treatment for Hepatitis C **URL:** \ **Category:** Miscellaneous and Personal Stuff I Must Share\ **Created:** [October 6, 2005, 6:05am UTC](https://boards.straightdope.com/t/interferon-treatment-for-hepatitis-c/325017 "2005-10-06T06:05:29Z")\ **Posts on this page:** 20\ **Page:** 1
**Author:** ![Johanna](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/johanna/32/8318_2.png) [@Johanna](https://boards.straightdope.com/u/Johanna)\ **Post date:** [October 6, 2005, 6:05am UTC](https://boards.straightdope.com/t/interferon-treatment-for-hepatitis-c/325017/1 "2005-10-06T06:05:29Z")
I started it the other week. It makes me sick as a bitch. It’s ugly. Now I really feel the reason why Naomi Judd retired. It’s so difficult to function on this nasty, nasty treatment. Fortunately, I have genotype 2a, supposed to be the best responder, and at least the pegintron treatment is an improvement over the previous ones. It goes for 6 months instead of a year. One injection per week. They said to do it Friday night so that your weekends will be ruined but you can still be a productive worker bee Mon-Fri. I have had to cancel all my weekend plans, but for that matter my energy is shot all through the workweek too. I can hardly eat anything most of the time. The first time I got an injection, a few hours later I was taken so ill I had to leave a meeting downtown and go home to collapse. My gender therapist says she takes interferon every other day and it doesn’t bother her any more. She suggested I take Tylenol 45 minutes before the shot. I tried it and it seemed to help: I merely got sick instead of being brutally steamrollered by illness. As a Witch, I read it mythologically: From the autumnal equinox to the vernal equinox, a six-month trip to the dark underworld, just like in the ancient myths. I’m going to be functioning at much less than full capacity during this period. ---
**Author:** ![Ayesha](https://avatars.discourse-cdn.com/v4/letter/a/c0e974/32.png) [@Ayesha](https://boards.straightdope.com/u/Ayesha)\ **Post date:** [October 6, 2005, 8:35am UTC](https://boards.straightdope.com/t/interferon-treatment-for-hepatitis-c/325017/2 "2005-10-06T08:35:06Z")
Yeah, been there, done that. Only I did 2 rounds first interferon alone for 18 months. That sucked and I do not mean in a fun kinky way. I did reach remission but was back to a full viral load within a couple of months after treatment ended. In 2001/02 I did 9 months of interferon and ribaviron. That was bad too, I got a rash and had to stop treatment for 2 weeks then started again. I did clear the virus and was still clear 6 months later I am a 3a btw. I am about to go back for a recheck sometime soon. Treatment is hard, ignorant people who know nothing of the virus are hard to deal with too, but you can survive both. At least it is down to one shot a week now, with me first it was a shot 3 times a week and the with the ribiviron added it was 3 shots a week and about 6 or so pills a day. Good luck and if you need an ear my email is [dkohb@yahoo.com](mailto:dkohb@yahoo.com) ---
**Author:** ![bouv](https://avatars.discourse-cdn.com/v4/letter/b/bc8723/32.png) [@bouv](https://boards.straightdope.com/u/bouv)\ **Post date:** [October 6, 2005, 11:52am UTC](https://boards.straightdope.com/t/interferon-treatment-for-hepatitis-c/325017/3 "2005-10-06T11:52:13Z")
[Simpsons reference] Dr.Hibbert: Stop that! You’re wasting thousands of dollars of interferons! Homer: And you’re interferon wth our fun! [/Simpsons reference] Hope your treatment goes well. I have no personal anecdote about it, but it sounds like a bitch, but I know you’ll pull through. ---
**Author:** ![Qadgop\_the\_Mercotan](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/qadgop_the_mercotan/32/83_2.png) [@Qadgop\_the\_Mercotan](https://boards.straightdope.com/u/Qadgop_the_Mercotan)\ **Post date:** [October 6, 2005, 3:49pm UTC](https://boards.straightdope.com/t/interferon-treatment-for-hepatitis-c/325017/4 "2005-10-06T15:49:08Z")
Johanna, are you on ribavirin also? Just curious. I’ve only treated a handful of type 2 and 3, but the outcomes are certainly better more often than for the type 1 folks. A lot of my patients believe that pre-loading with tylenol or something like ibuprofen before the peg-intron shot helps them a lot in coping. ---
**Author:** ![bizzwire](https://avatars.discourse-cdn.com/v4/letter/b/958977/32.png) [@bizzwire](https://boards.straightdope.com/u/bizzwire)\ **Post date:** [October 6, 2005, 5:34pm UTC](https://boards.straightdope.com/t/interferon-treatment-for-hepatitis-c/325017/5 "2005-10-06T17:34:11Z")
Vertex Pharmaceuticals is working on a protease inhibitor to treat Hep-C. The initial results (Phase 1 studies) are very promising; 4-log drop in viral loads after a 14-day treatment. Latest results also suggest that it may reduce liver inflamation. Phase II studies will begin shortly. Full disclosure: I work for said company. ---
**Author:** ![Qadgop\_the\_Mercotan](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/qadgop_the_mercotan/32/83_2.png) [@Qadgop\_the\_Mercotan](https://boards.straightdope.com/u/Qadgop_the_Mercotan)\ **Post date:** [October 6, 2005, 7:16pm UTC](https://boards.straightdope.com/t/interferon-treatment-for-hepatitis-c/325017/6 "2005-10-06T19:16:50Z")
What viral genotypes are being used in the tests, **bizzwire**? ---
**Author:** ![bizzwire](https://avatars.discourse-cdn.com/v4/letter/b/958977/32.png) [@bizzwire](https://boards.straightdope.com/u/bizzwire)\ **Post date:** [October 6, 2005, 10:03pm UTC](https://boards.straightdope.com/t/interferon-treatment-for-hepatitis-c/325017/7 "2005-10-06T22:03:46Z")
> [@Qadgop the Mercotan](#): > > What viral genotypes are being used in the tests, **bizzwire**? I really ought to know this. But I don’t. I’m tempted to say “The one that doesn’t respond well to conventional therapy,” but I’ll have to double check (I’m on the chemistry side of things, not the clinical)… I’l be back… ---
**Author:** ![bizzwire](https://avatars.discourse-cdn.com/v4/letter/b/958977/32.png) [@bizzwire](https://boards.straightdope.com/u/bizzwire)\ **Post date:** [October 6, 2005, 10:12pm UTC](https://boards.straightdope.com/t/interferon-treatment-for-hepatitis-c/325017/8 "2005-10-06T22:12:55Z")
> [@Qadgop the Mercotan](#): > > What viral genotypes are being used in the tests, **bizzwire**? Back. All patients in the clinical trial had genotype 1 HCV infection ---
**Author:** ![Ayesha](https://avatars.discourse-cdn.com/v4/letter/a/c0e974/32.png) [@Ayesha](https://boards.straightdope.com/u/Ayesha)\ **Post date:** [October 7, 2005, 7:28am UTC](https://boards.straightdope.com/t/interferon-treatment-for-hepatitis-c/325017/9 "2005-10-07T07:28:33Z")
All type 1’s and they are doing that well ?! Huzzah ! That is wonderful news, it really is. This virus is one tricky mo-fo and anything thing that takes it down a notch or 3 is good IMHO. ---
**Author:** ![Johanna](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/johanna/32/8318_2.png) [@Johanna](https://boards.straightdope.com/u/Johanna)\ **Post date:** [October 8, 2005, 12:39am UTC](https://boards.straightdope.com/t/interferon-treatment-for-hepatitis-c/325017/10 "2005-10-08T00:39:12Z")
It’s worse than I’d said. The night before last, as I was finishing typing up the above OP, suddenly I began to black out. I had just enough consciousness left to click the “Submit” button, then I was unconscious. When I came back to semi-consciousness, I was afraid I might die alone down here in the basement, and since it was 2 AM, it would be hours before anyone found me. I felt I had to get upstairs to where my family was sleeping. I got up and tried to walk, but blacked out again suddenly. I fell forward and hit my face on a bookshelf full of my CD collection. I cut the whole width of my right eyelid and the bridge of my nose with deep gashes. When I opened my eyes, it was frightening. I didn’t know who I was or where I was or what was happening, or anything at all. I had just enough consciousness to know that I had no consciousness, and that was the frightening thing. I crawled to the foot of the stairs, and blacked out again. Finally I dragged myself upstairs and crashed on the bed, unaware of how badly I was cut. The pain in my face was the only thing that made it possible for me to move. About 5 AM I woke up and was still bleeding. I went to the ER and my blood pressure was down to 90 over 55. I got 9 stitches on my face in the ER. They kept me hospitalized overnight; I just now got back home. I dread going back to work with a Frankenstein face. People will think I was falling down drunk, or on Ludes. I do not drink and I’ve never popped a Lude in my life. Interferon has all the brain fog of party drugs with none of the fun. I’m feeling mostly better now, but… it’s Friday evening. Time for another interferon shot. Ugh. I have to be really careful with this dangerous shit! **QtM** , yes, like **Ayesha** said, I pop 6 ribavirins a day. I wonder how I will survive the next five and a half months. **Ayesha** , I don’t know how you did it, girlfriend. I admire your fortitude for enduring a treatment much worse than mine. Tell me how you felt after you finally got the HCV cleared out of your liver. Give me something good to look forward to. ---
**Author:** ![Ayesha](https://avatars.discourse-cdn.com/v4/letter/a/c0e974/32.png) [@Ayesha](https://boards.straightdope.com/u/Ayesha)\ **Post date:** [October 8, 2005, 1:25am UTC](https://boards.straightdope.com/t/interferon-treatment-for-hepatitis-c/325017/11 "2005-10-08T01:25:55Z")
STOP !!! DO NOT take that damn shot until you talk to your doctor about that reaction you had. I am not playing, you really need to tell the doctor who is supervising your treatment about that. I felt better after I cleared the virus, more like myself again, not so tired and drug out. I am serious about not doing that shot until your doc knows what happened if s/he doesn’t already. BP that low is dangerous. Please be careful. ---
**Author:** ![Johanna](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/johanna/32/8318_2.png) [@Johanna](https://boards.straightdope.com/u/Johanna)\ **Post date:** [October 8, 2005, 2:14am UTC](https://boards.straightdope.com/t/interferon-treatment-for-hepatitis-c/325017/12 "2005-10-08T02:14:22Z")
I checked with my gastroenterologist today and he said to go ahead with the treatment. I got my BP back up to normal this evening before being discharged from the hospital. ---
**Author:** ![Ayesha](https://avatars.discourse-cdn.com/v4/letter/a/c0e974/32.png) [@Ayesha](https://boards.straightdope.com/u/Ayesha)\ **Post date:** [October 8, 2005, 4:56am UTC](https://boards.straightdope.com/t/interferon-treatment-for-hepatitis-c/325017/13 "2005-10-08T04:56:32Z")
Whew, ok. I’m sorry if I over re-acted. I am glad your GI knows what happened. If he feels it’s safe then I guess you are good to go. I will tell you somethings I learned from others with Hep C, watch your blood sugar, some folks started having problems with theirs after being diagnosed with Hep C. And take extra good care of your teeth, mine went to hell during the first round of treatment. Others I talked to had the same problem. My doctor had no clue when I tried to discuss it with him. ---
**Author:** ![Johanna](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/johanna/32/8318_2.png) [@Johanna](https://boards.straightdope.com/u/Johanna)\ **Post date:** [October 8, 2005, 6:54pm UTC](https://boards.straightdope.com/t/interferon-treatment-for-hepatitis-c/325017/14 "2005-10-08T18:54:31Z")
Really, **Ayesha**? I _thought_ something was up with the teeth. Thanks for confirming that. No one had told me about this side effect. As soon as the treatment started, I began getting a horrible toothache that had never bothered me before. I got the shot last night, and I feel very weak and dizzy. The worst thing today is the mental side effects. I lost it and began screaming at my family. I collapsed on the floor, screaming incoherently and cursing everyone. This is _sooo_ not me. I was never like this in my whole life. It’s like something alien took me over. After I recovered my senses, I began crying at what I’d done. I hope they understand. ---
**Author:** ![Ayesha](https://avatars.discourse-cdn.com/v4/letter/a/c0e974/32.png) [@Ayesha](https://boards.straightdope.com/u/Ayesha)\ **Post date:** [October 9, 2005, 1:23am UTC](https://boards.straightdope.com/t/interferon-treatment-for-hepatitis-c/325017/15 "2005-10-09T01:23:28Z")
Geeze, I don’t know Johanna most of my sides were mostly physical with some depression thrown in. I had flu like symptoms with each shot and the one round of rash face but NOTHING lke you are dealing with. But everyone is different and responds to different drugs in their own way. I know before the doctors would even think of starting me on interferon they sent me to a shrink because from what I was told by my then GI doc there had been problems with depression on it especially for those already prone to it. I think (MHO only) it was because of feeling so bad so much. I suggest that keep a notebook to journal all these problems in and share it with your doc. Who knows if it’s the interferon or the antiviral giving you fits. Be sure you are taking good care of your body, eating right, resting and doing things to make yourself happy as often as you can And please report the emotional problem you had. I was put on aanti depressants during my treatment and it did help somewhat with that. ---
**Author:** ![Qadgop\_the\_Mercotan](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/qadgop_the_mercotan/32/83_2.png) [@Qadgop\_the\_Mercotan](https://boards.straightdope.com/u/Qadgop_the_Mercotan)\ **Post date:** [October 9, 2005, 2:20am UTC](https://boards.straightdope.com/t/interferon-treatment-for-hepatitis-c/325017/16 "2005-10-09T02:20:31Z")
Best of luck to you, **Johanna** , and all others on treatment. I hope it works for you. But you illustrate exactly why I tell my patients that treatment is not for everyone, and for many people it can be worse than the disease. So many of my patients come into prison with their diagnoses of Hep C, then _demand_ they be treated. I have to tell them that many people can do fine for decades or longer with the Hep C virus in their system, and we’ll only treat them if it appears that they’re not doing so fine anymore (chronically elevated ALT levels over 75, evidence of scarring on liver biopsy for the type I folks), and if they’re cleared by psychiatry and are healthy enough to survive the treatment. Otherwise, I advise they wait for better treatments to be invented. And I’m glad to see that perhaps new and better treatments are coming towards us. ---
**Author:** ![Johanna](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/johanna/32/8318_2.png) [@Johanna](https://boards.straightdope.com/u/Johanna)\ **Post date:** [October 9, 2005, 3:11am UTC](https://boards.straightdope.com/t/interferon-treatment-for-hepatitis-c/325017/17 "2005-10-09T03:11:55Z")
Heh, and I’d been given to understand that peg-intron _was_ the new and improved treatment we were waiting for. **QtM** , I was diagnosed 8 years ago, but I put off the treatment until now. Both my biopsies showed “bridging scars.” My ALT had been in the 80s for all these years. **Ayesha** , you sure do know what you’re talking about. As a matter of fact, I’ve been dealing with blood sugar levels for over 2 years now, and I always knew it was the Hep screwing up my sugar. I would get suddenly hypoglycemic and feel very nervous and anxious because of it. My doctor told me carbos will not only not help the hypoglycemia, but actually make it worse. She suggested protein food to counteract it, and vegan Johanna thereafter lived on a lot of tempeh, tofu, and soymilk, with emergency doses of peanut butter p.r.n. The hypoglycemia hadn’t been bothering me much this year, but wouldn’t you know it came back when I started the peg-intron. Resulting in the most bizarre medical Catch-22 I’ve ever had, when hypoglycemia and nausea struck simultaneously. I urgently _have to_ eat something — but I _can’t_ eat anything! My daughter, who does not accept my transsexuality, searched online and came up with a claim that Hep C can lead to MTF transgendered results by decreasing androgen and boosting estrogen, or something like that. I have not seen that web page, so I can’t cite it. I have no idea how factual this is. I developed gynecomastia several years ago. It happened all on its own without my doing anything, but I remember I welcomed it and enjoyed it. I wore clingy tops to show off my breasts. The fact that I was _happy_ about growing my own titties probably should have tipped me off that I was transgendered. _“Duh”_ ---
**Author:** ![Ayesha](https://avatars.discourse-cdn.com/v4/letter/a/c0e974/32.png) [@Ayesha](https://boards.straightdope.com/u/Ayesha)\ **Post date:** [October 9, 2005, 5:45pm UTC](https://boards.straightdope.com/t/interferon-treatment-for-hepatitis-c/325017/18 "2005-10-09T17:45:30Z")
Ohhhhh do try to get the site addy from her. IMHO hormones have nothing tio do with the transgender issue I say this because when I was 27 I stopped having periods, gained weight, lost head hair, grew a beard and all that good stuff, my blood contained testosterone levels that were normal… for a freaking man. My body did this alone with no help. But I had no disire to be a anything other than a woman . (The doctors said poly cystic overian syndrome, not disease because there were no cysts. I had a hysterectomy in 02 and with-in a month my hormone levals were back to normal) I shared that to say either you are transgendered or you aren’t . I don’t know a lot about that but have been reading the stories and watching a lot of the stories they show on tv about the things transgendered folks go through trying to educate myself. I hope your daughter comes to understand you one day. Good luck with treatment, let us know how you do, I found much support when I was on treatment here on the dope. ---
**Author:** ![Johanna](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/johanna/32/8318_2.png) [@Johanna](https://boards.straightdope.com/u/Johanna)\ **Post date:** [October 10, 2005, 4:42am UTC](https://boards.straightdope.com/t/interferon-treatment-for-hepatitis-c/325017/19 "2005-10-10T04:42:32Z")
**Ayesha** , I asked her but she said she forgot where to find it. It may be that she read about the effect of Hep on hormones, and extrapolated her own theory from there, I don’t know. Thanks for the personal information which, you’re right, clearly shows that hormones do not determine gender identity. My TG goes back into my childhood, many years before I could have contracted Hep C. I probably got it during my college years, but I don’t know how I got it. ---
**Author:** ![Johanna](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/johanna/32/8318_2.png) [@Johanna](https://boards.straightdope.com/u/Johanna)\ **Post date:** [October 12, 2005, 10:03pm UTC](https://boards.straightdope.com/t/interferon-treatment-for-hepatitis-c/325017/20 "2005-10-12T22:03:11Z")
Why do I feel I must continue posting updates on this? I just spent three more days in the hospital. I just got back home this afternoon. Early on Monday morning I was awoken by the need to vomit. I spent the whole morning vomiting over and over and over, and then came diarrhea which lasted for 3 days. I was extremely weak and unable to get up or do anything at all. I’m ambulatory now but still not 100% recovered. I had an alarming case of anemia. My hematocrit was down to 28 when it should have been a minimum of 36. It’s up to 29 now. This just happened over the weekend because my hematocrit had been normal when I was in last week. My gastroenterologist says he’s never seen interferon treatment cause such bad results in his practice. I say just because it never happened in his practice that doesn’t mean it’s impossible, he should check the literature for other cases like this. The internist who saw me in the hospital thinks the medication is to blame and recommended that I lay off the treatment. My gastroenterologist thinks I should continue with it. I’m all confused now about how to proceed. No one has any etiology for my sudden anemia. I felt that the extreme vomiting and diarrhea happened because my body sensed something _really_ nasty (interferon) in its tissues and was desperately trying to expel it. But since it had already worked its way into my cells, it couldn’t be gotten rid of just like that. This is what chemo must feel like. Meanwhile, this damn toothache is killing me. My appointment at the dentist was canceled because I was in the hospital. What I need first of all is a clear idea of whether it’s worth continuing this treatment all the way through. I’m going to have another ginger ale. [Next page](https://boards.straightdope.com/t/interferon-treatment-for-hepatitis-c/325017.md?page=2)