13641Re: [GIWorld-Hepatitis] Treatment considerations in patients with hepatitis C...
- Jan 15, 2004Julie,
Unfortunately, your plight is all too familiar. We hear it quite often.
I had been feeling bad for years. Had chronic migraines, bladder infections, kidney infections, sinus infections which weren't really infected, docs said I had all the symptoms but usually no infection.
I kept getting weaker and weaker. I worked out 3 times a week with weights and tai chi and felt worse instead of better. I marked it up to having teens and remarrying, working and going to school at night. I stopped going to school at night, thot that would help. It didn't.
Then I began having "the flu". Nobody else had the flu and I've never had the flu before in my life, not even a cold. Before the "infections" I'd rarely been ill. I'd take a or two off work and rest, feel better, go back to work.
My mental health was getting worse but I didn't realize it at the time. I thot for a while that my new husband might be poisoning me (overactive imagination :).
This was in the late 80's. On my honeymoon I was so exhausted all I did was sleep and sit on the beach. I didn't even have the energy to have sex! hahahaha
What saved me was donating blood. Finally the test for the antibodies was developed and in 89 or 90, I can't remember the exact year, I donated at work and was notified 6 mo later that I tested pos for hbv and hcv. I had no idea what these were and was so relieved it wasn't hiv!
All these years I've donated twice a year religiously. Who knows how many people have gotten my tainted blood. I don't know how long I've had it. I could have gotten it sexually when I was single, unlikely, or from a C section or rho gam shots in the 70's.
I have mild fibrosis and normal liver enzymes. All my blood work looks normal. I did treatment a few years ago and cleared while I was on treatment but relapsed at the 6th mo post pcr test.
I won't do treatment again, and actually can't, because 6 mo after I finished the hep treatment I discovered I had malignant melanoma and I went back on interferon, this time high dose interferon, for another 48 weeks. One month of that was IV. Even that didn't get rid of the virus! And I can't do ribavirin again, because it's a carcinogen. I don't need any help getting cancer, thank you very much. (genotype 1b)
On the hep treatment I didn't feel that bad. After 6 or 7 mo I got bad migraines and very bad mood swinigs, but the flu like pains and aches never hit. Now I did get really bad withdrawals the first month after treatment. I thot I was going thru physical hell.
After the hep treatment I got hives for 2 1/2 years. The interferon messed with my immune system. It screwed with my thyroid while I was on treatment, but it went back to normal when I finished treatment, which is pretty normal with treatment.
I highly recommend anyone doing treatment find a good antidepressant and get on it several weeks BEFORE starting treatment. It takes that long for them to get to working. Interferon is a known depressant. It messes with the chemicals in your brain. It is not like you have the choice to be depressed or not be depressed. Very very few people do NOT get depressed on treatment.
I found out that I cannot take SSRI's (paxil, celexa,zoloft, lexapro, etc) because they make me depressed. I have to take Wellbutrin. My gastro gave me SSRI's because this is the routine antidepressant prescribed for heppers on treatment. However, it made me worse, more depressed, more moody. I didn't realize the problem until I was off treatment and took myself off the antidepressants (slowly, do not suddenly stop antidepressants).
When I realized I was going back on interferon for the cancer, I found a clinic that specializes ini chronic illnesses. I knew I would need some special help with this hep and what the interferon does to me. My cancer doctor just looked at me like I was from outer space when I told him I've already experienced interferon and what antidepressant did he rercommend? He said he didn't put people on them. I knew them I'd better find some extra help! So I found this clinic and they've really saved my mental life.
The Wellbutrin has given me some energy, whereas the SSRI's made me sleep all the time. SSRI's made me gain weight.
Now I deal with fibromyalgia and chronic fatigue from the hep c and triggered by the treatment, but it's getting a bit better.
While you may feel bad from treatment sides, I hope you don't have to feel bad from the hep. If you take care of yourself and depending on your age, you may not have to worry about that too much. With mild fibrosis, I probably won't have to worry a bout my liver the rest of my life, just deal with the sides.
I'm sorry you have to do more treatment. But good luck to you!
Grand Prairie, Tx
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