Interferon Interferin': Anonymous Adventures in Hepatitis-C Help
May 13, 2010 5:56 AM   Subscribe

Help/Suggestions with starting interferon treatment for Hepatitis C. (much much much more inside; first time anon who is always a poor editor once he finally starts talking about himself)

The feedback in this AskMe is great (though sometimes terrifying) but since that was for a friend rather than the actual patient, I'm curious for more direct advice (and I don't feel comfortable piggy backing on offers of assistance for someone else a year later)

Stats: partnered gay man in my 30s. HIV+, former addict, mild depression, getting treatment for all of the above.

Last year, I tested positive for Hepatitis C. Not a huge surprise, and given that I've known I am HIV+ for 5 years, something I could process based on past experience. Without getting into the details, it's something that happened in a different part of my life, and though it was relatively just around the corner, it felt like a world away already then and especially now. My partner is also HIV and Hep-C positive, so fears of future sex partner transmission aren't an issue. It was something I knew I would have to deal with later, after my world had settled itself down a little bit more.

Fast forward to now: Since my HIV is relatively under control (high t-cells and undetectable viral load), I don't see my doctor as often as I should. My recent blood tests revealed that I had a high Hep-C viral load, and she'd like me to start interferon treatments ASAP. I'd planned on trying this eventually but didn't think it would be this quickly. Due to the possible severe side effects, I'm not as ready for this as I thought. Having flu-like symptoms for 6-9 months is pretty overwhelming, especially when it feels like I just got my life back on track. But I also want my HIV status to continue to be something I don't think about more often than not, I feel the need to meet this head on to prevent any future complications.

That said, here's the major categories of fears I need to deal with:

1) Depression side effect When I started taking Atripla (daily for HIV), my medical provider didn't tell me about the possible depression side effect. I already had some untreated depression issues at the time, but Atripla really overwhelmed me.Luckily, I listened to myself (and my partner's concern) and realized: This is not right. This is not me. I was relieved to hear that this was partially caused by the pills I was taking (I switched doctors in part because no one told me this might happen), and I got it under control. I've recently started taking Prozac again because I realized that even without the Atripla, I've got depression issues, and the last 5 months have been a joy in some ways compared to the previous 30 years. Since increased depression is apparently a huge possible side effect of the interferon treatment, I'd like to know if you have any suggestions on how to deal with this, beyond just being ready for it.

2) My partner: Since he knew he had Hep-C before we got together and I was unsure of my status but had tested negative for it previously, he's got a lot of guilt that I am going through this because of him, even though the high risk behavior (unsafe sex, IV drug use) wasn't a world to which he introduced me. Though it is possible, even probable, that I contracted Hep-C from him, I really only think of it that way when he brings it up, and even if we had a way to know for absolute certain that it was true, I don't care. I'm an adult responsible for my own decisions and I made them with full knowledge of what was going on (or at least as much as one can when one is strung out) But that, on top of the fact that he loves me in a 'can't stand to see me in pain' way, coupled with the fact that he saw my depression spiral when I started on Atripla, means he's also fairly freaked about the interferon treatment side effects. Though we've already had a 'I can't deal with this with this is you're who is going to make me feel worse' mini-fight last night, my words in that situation were bullshit (and I've admitted it). I will totally worry about him, and need him through this no matter how he's going to act (I know the limits of his behavior and they're worth it based on what I get in return from him) But if I'm already moody about it before I start taking something with a side effect that it may cause moodiness, I'm concerned about how I can try to not make things worse interpersonally. I'm not much of a talker, especially compared to him, and though I know he'll be there for me, I don't want to go through these next months with (just) a nursemaid, I want a partner too. We usually make a great team, especially in a crisis. How can I help him be the type of guy I need while still letting him be the type of overly protective partner he naturally is (which is amplified by his love and probably his guilt)?

3) Friends/Social Life: My wonderful, caring friends are certainly unfamiliar with this. Though I want to lean on them, I'm not sure how I can open up to them if these side effects get overwhelming. On one hand, they have been non-judgmental about choices/mistakes I've made in the past. On the other hand, I'm not sure I want to share yet another personal derail like this with them. But if they don't know what's up, I really don't want them to think that me distancing myself/looking sicker means that I'm getting high again. I'd really like to have someone other than my partner to unload on when/if I feel like shit. I'm not prone to do this, but if I tell them, it might be more likely If I do decide to tell them, how can I do it that doesn't worry them or make me feel like crap?

3a) Drinking: Related to this, I'll be suddenly not drinking. I am a social drinker who enjoys a cocktail or two after work a couple of times a week; sometimes a bit more but nothing regular. However, I've definitely found that using this to take the edge off has been a tremendous help when I might feel myself slipping into other potentially bad habits (see other drug history above - I realize there's no 12 step program I've ever seen that thinks this is a good idea); I don't fear that I will skip straight from not drinking alcohol to shooting up again, but any help on this change (the only one that definitely will take place)?

4) Work: If these side effects are as super bad, they could affect my day to day life. I have been ill in the past and needed to miss a lot of work, and my management knows I have a chronic condition (some specifically that it's HIV) and have been helpful/flexible when I've had the guts to share those specifics with them. Our paid time off is the same for sick days and vacation, so I feel no guilt using these days to call in sick, but I want to best prepare for this eventuality if it comes to that. I have no intention of saying that its treatment for Hep C, since this is so (accurately in my case) associated with IV drug use, but any suggestions on how to prepare for this professionally-- and if I should put the possibility out there before I actually have to use it>

5) Liver biopsy: This is the only strictly medical question and YANMD. But every time my partner has discussed the possibility of treatment,his physician has talked about getting a liver biopsy . Much that I have read on-line today has suggested the same thing. My doctor did not. Any idea why? I didn't know enough last night to ask her about it and will in the future. My assumption is that we will want to try this no matter what or that other blood tests that have been run show my liver is still (relatively) healthy, but wondered if there is another reason or if I should definitely insist on a liver biopsy.

6) My plan of attack: Treatment will be a daily pill and weekly injection. At this point, I still don't know the genotype, which will determine how long treatment will last, but since my dose will be the same no matter what, my doctor has written my prescription. I have decided that I will start the treatment on a Friday, since it seems the side effects for injection can be the strongest, and I'd like to have the weekend to recover. I'm not ready for it this Friday so am making an appointment (to learn the injection procedure) next Friday. In the meantime, I'm also going to try to schedule an extra appointment with my psychiatrist (who I don't have regular appointments with beyond every 3 months in order to refill my prescription) to see if she has any insight as to what to expect or recommendations.

a) Medically, if you've gone through this (or something similar), does this (Fridays as worst days, waiting just a bit to start) seem sound? Is there anything else I may be forgetting?

b) There's seemingly nothing I can do to make the side effects less likely to happen -- either they do or they don't. But what can I do to make things easier if I'm one of the unlucky ones.

Thank you if you've read this far (believe it or not, this is the edited version -- and writing it has already helped tremendously); I appreciate any help you may be able to provide. You can reach me anonymously at BaconDentalDamn@gmail.com (don't ask) or I can respond over Mefi Mail if you post in the thread if anonymity doesn't worry you. (Beyond this post, I'm not personally that concerned with keeping this a huge secret.) Obviously, I will honor your privacy no matter how you respond.
posted by anonymous to Health & Fitness (5 answers total)
 
From what I've heard, it's best to start antidepressant medication a few months or maybe weeks before starting Hep C treatment, particularly if you already know you are prone to it. I don't know the exact timing, but a pubmed search should yield the studies that found that this worked. If there's a med you've already taken that works for you, that's probably the one to use this time. If you are already on meds, you may want to think about increasing the dose in advance of starting treatment. Ianad.

Years ago, a friend was involved in a group called the Hep C Action and Advocacy Coalition-- but I can't seem to find them online now, but looking for one of those online patient groups would probably be a good source for info. patientslikeme.com has an HIV/AIDS community that may be of use- they don't have a Hep C only one yet, it seems.
posted by Maias at 7:51 AM on May 13, 2010


3) Friends/Social Life: My wonderful, caring friends are certainly unfamiliar with this. Though I want to lean on them, I'm not sure how I can open up to them if these side effects get overwhelming. On one hand, they have been non-judgmental about choices/mistakes I've made in the past. On the other hand, I'm not sure I want to share yet another personal derail like this with them.

I can't address the medical issues, but, were I in your friends' position, I'd want to be told. This isn't a personal derail; it's you life and your health and it's not a trifle or something to feel embarrassed about. It's not like you're mired in bad relationship woes or anything like that. Seriously--tell them, let them share the burden, and let them help. You need a support system. Let them be that.

Best of luck to you.
posted by PhoBWanKenobi at 9:06 AM on May 13, 2010


Sorry to hear that you're going through this. Can you find a support group near you? If you're in San Francisco, memail me, and I can send you info about groups. Having support from people who've gone through this has been really important to my friends who've done interferon. It is challenging, but it is survivable, and does work for many people.

3a) Have you considered marijuana? It's not as bad for the liver as alcohol, but obviously wouldn't work if it sends you back to other bad habits, and doesn't address the social awkwardness of not drinking.

5) That's absolutely a question you should ask your doctor, and you should expect a very clear answer.

Here are some links to a couple of good sites I know:

HCV Advocate
HIVandhepatitis
posted by gingerbeer at 9:22 AM on May 13, 2010


While I don't have any experience with Hep-C, I am very familiar with the side effects of a related interferon injection used to treat another condition. The person I know has found ibuprofin (advil/motrin) to be extremely helpful in managing the flu-like side effects. It's the difference between miserable achiness and fatigue, and feeling basically normal, all from your standard dose (400-600 mg, 2-3 tablets) of a common over-the-counter medicine. Honestly, I wish it worked that well for headaches. Good luck to you.
posted by vytae at 9:42 AM on May 13, 2010


There's a lot I don't know how to answer. There's the potential for interferon treatment to be miserable.

1) I think that the most useful thing you can do is to remind yourself that this is something that's not going to go on forever. If you want to prepare for this, write yourself a letter, citing risks of depression, and your acknowledgment that these are risks, and why you're going to do it anyways. One of the worst things about depression is hopelessness. If you can find a way to remind yourself that this is not a hopeless situation, you're going to be better off. Beyond that, I don't know.

3) If any of your friends might seriously suspect that you might be shooting up again, it'd be better to nip that in the bud. If you tell only a few, that will help educate the rest. It doesn't have to be dumping on them. It can be a simple communication: "I'm going into some treatment that's going to make me look like a junky. I'm not a junky anymore. It's going to be a long time. Here's a page on Wikipedia about it." Talking about it before you're undergoing therapy is easier than waiting until it looks like you're making excuses, than waiting until you don't have the patience or energy to deal with the judgment.

3a) Talk about your social drinking, and your concerns about your social life, with your doctor. If you haven't already. They may have ways to help. (They may not.) If you are involved with any kind of group therapy, ask those folks (sorry if that's a duh). If you are not involved with any kind of group therapy, try it out a couple times. It's not as bad as it sounds.

5) I'm reluctant to guess at this, but you seem well informed enough that you're not going to take my answers as anything other than guesses. Liver biopsy is indicated to carefully evaluate the extent of liver damage. Hep C is not always associated with liver damage! If your history suggests a recent infection, you are asymptomatic, your enzymes are reasonable, and you don't have a history of other stuff bad for your liver (don't know your history, but heroin use on its own isn't bad for your liver), then it might be perfectly reasonable to think that a liver biopsy isn't indicated. Again, this is a guess, I am not a doctor.
posted by nathan v at 1:16 AM on May 14, 2010


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