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post hep c treatment side effects
After 12 months on peg and Riv and responding THank goodness... I have 3 1/2 months to go of the required 6 months and I still suffer from side effects esp. extreme tiredness. On anti depressant or else I,d be very down. I am new to the computer and to the forum as well as to support. I want to learn from others how it has been for them after treatments.... 6 months and longer. I sure would like to feel better... I expected to feel better and so that is why I am disappointed... I sleep a lot. I am truly tired. All tests are good but.. thank you "CHICKEN" Question: what have others experienced as far as side effects after treatment? Geno type 1 Chronic active hep c
I just saw that you addressed this to me .. I got my final results March 2012. "Cured" were my nurses words! .. First diagnosed in 2001 .. didn't even think I'd ever hear that.
I agree, there's lots to be said in 'misery loves company', and hosting the occasional pity-party ... but it is important to also express the positive as much as possible. I've learned that so often from many friends who deal with HIV or cancer. I hope you had final success with your treatment as I did ...again, thanks for your message! :-)
I agree, there's lots to be said in 'misery loves company', and hosting the occasional pity-party ... but it is important to also express the positive as much as possible. I've learned that so often from many friends who deal with HIV or cancer. I hope you had final success with your treatment as I did ...again, thanks for your message! :-)
Well, had my final appt in March .. and I have been successful in maintaining SVR!! As the nurse said: I am cured.
Yes, my previously-always low cholesterol rose during treatment, and has stayed elevated .. but my GP isn't too worried. The weight I lost -it found me again!! My thyroid is under-performing (but not according to Canadian standards), and my hemoglobin is still on the low side, so I need to explore increasing my iron (which I'll do before I worry too much about my thyroid .. lots can throw that out, anyway, which has happened often throughout my life).
Low energy, hair loss and insomnia? I still do feel tired once in awhile, but that could be connected to the low iron; the hair stopped falling out in handfuls some time ago...I've just gone shorter...and I think I'm seeing regrowth along the hairline. The insomnia happens occasionally, but since I am menopausal that could be connected.
The bottom line: I don't regret doing the treatment. It *was* hell, and it ain't for no sissies, that's fer damn sure! But, neither is aging.
I am glad I waited, I am so grateful I got into a study where I was only on the standard tx for 4+ months (not 6).Treatments are getting better all the time. A friend may be in a study in June that does not use interferon/rib combo at all .. and is only 6 weeks. That sounds promising, and amazing.
Whatever your decision, remember, it is your health, and your journey.
All the best to you in yours.....
Yes, my previously-always low cholesterol rose during treatment, and has stayed elevated .. but my GP isn't too worried. The weight I lost -it found me again!! My thyroid is under-performing (but not according to Canadian standards), and my hemoglobin is still on the low side, so I need to explore increasing my iron (which I'll do before I worry too much about my thyroid .. lots can throw that out, anyway, which has happened often throughout my life).
Low energy, hair loss and insomnia? I still do feel tired once in awhile, but that could be connected to the low iron; the hair stopped falling out in handfuls some time ago...I've just gone shorter...and I think I'm seeing regrowth along the hairline. The insomnia happens occasionally, but since I am menopausal that could be connected.
The bottom line: I don't regret doing the treatment. It *was* hell, and it ain't for no sissies, that's fer damn sure! But, neither is aging.
I am glad I waited, I am so grateful I got into a study where I was only on the standard tx for 4+ months (not 6).Treatments are getting better all the time. A friend may be in a study in June that does not use interferon/rib combo at all .. and is only 6 weeks. That sounds promising, and amazing.
Whatever your decision, remember, it is your health, and your journey.
All the best to you in yours.....
Boy, do I agree with alot of your side affects, like blowing up for no reason, my depression is well controlled, but not on this 'poison' as I call it too. I have stopped treatment after 6 weeks, the virus was undetectable at 4 weeks, but I stopped because I could no longer deal with firarrhea and now my teeth and gums are bleeding when I brush . . .I am not losing my teeth over this and now explosive fits of anger, then crying . . .then aching joints, then exhaustion takes over . . .so pray it stays undetectable for me.
Wish I had visited here sooner, but if someone has after tx side affects to share, I would love to know what is next with this.
Wish I had visited here sooner, but if someone has after tx side affects to share, I would love to know what is next with this.
Have them check your thyroid if you haven't done so already. The tx can cause long lasting thyroid desease, which can also cause extreme fatigue.
I'm tending to my daughter who's suffering this week with a nasty upper respiratory bug (adult-"child", who seems more child-like when she's ill) .. and it gave me an image of what I must have seemed like in the midst of my interferon-misery as she heaves and sighs and can barely move to just drink her fluids. What a mess I felt like this summer - the summer that wasn't, at least for me.
But walking thru' our warehouse at work today, I realized the lousiness I felt a mere few weeks ago is becoming a distant memory.
I'm still experiencing my holy trinity: insomnia (posting at 3am!), dry skin/rash (actually, blepharitis) and the hair loss...oh, the hair loss! But the fatigue - not there. Haven't taken anything for aches or pains in weeks...which is lovely. Appetite - pretty much normal, tho' I still have some of the odd cravings I had during tx. But I've only regained about 5lbs .. tho' with the Holidays approaching, I might have to be more disciplined. I haven't even 'celebrated' my 12-week SVR status with a toast yet, as other personal issues/problems have taken precedence. And for the most part, I have the energy to deal with those problems, and that includes physical AND mental energy, something of which I was in very short supply throughout my tx.
For those who feel they are no longer the "real persons" they once felt they were, I don't really know what to say. I know I'm not the 17-year old, or 24, or 36, or even the 42-yr old I once was. I'm now 52. And I think I have the energy of the average 52-yr old. I don't think I'll ever have the same energy or verve I had at those ages. (Hell, I know my RA pains started in my mid-30s, I just didn't know it at the time, but it wasn't enough to hamper me back then). All I know is, today, I feel I can lay to rest the fears I had a couple of months ago when I was anticipating a more negative result of this experience. While circumstances (mostly financial) haven't let me explore the alternative avenues to continue cleansing the meds out of my system as I planned, I also realize that my body is doing that anyway. But, just noticing .. and focusing .. on the positive aspects so far have gone a long way to my improvements both internal & external. Everyone around me has noticed how much better I look, sound and seem. And they're right. If I want to focus on the negative, I will likely feel that way, too. This attitude is something I learned from my many friends in the HIV+ community. Outside support is one thing that can go a long way to help, but it's important to remember to support ourselves internally, too, and that comes in very personal forms. I think as long as it's working for you, then it can only do good. But if I'm expecting this tx to be a magic bullet, or a 'restore' button that will transport me to my halcyon days of being an immortal 20-something, then I'm being unrealistic. And...that, I've discovered, has been something of a 'magic bullet'! Instead of taking on too many projects now I'm back at work, or working thru' my break 'cuz I've got the energy, or getting all my weeks' worth of grocery & meal-planning organized, and getting all the housework done in a couple of hours (and feeling like a failure if I didn't get all my To Do's done), I learned to let go...a lot! And I learned the world won't stop spinning, since it didn't this summer when my fatigue forced me to let go .. a lot! I shop less, eat less, drink water more, do less housework, hang out with my friends or kid more often, and if I try to honour my physical self more .. if I'm tired I actually rest or nap (I was never a 'napper' before). I prioritize what HAS to be done, and let go of a lot of stuff that really isn't essential.
So, while I can't recommend that anyone do .. or not do hcv tx, I can say that now, I do not regret my decision. Everytime I hear of someone who has died recently of liver cancer (which I know could be from any number of reasons besides hcv), I think, "that could be me...in 20 or so years", but I just don't think it will happen now.
I will try to remember to post something after my December f/up. My LAST post-tx appt will be March 2012. Maybe then I'll toast a celebration. I wish everyone else the best of luck wherever you are in your hcv journey.
But walking thru' our warehouse at work today, I realized the lousiness I felt a mere few weeks ago is becoming a distant memory.
I'm still experiencing my holy trinity: insomnia (posting at 3am!), dry skin/rash (actually, blepharitis) and the hair loss...oh, the hair loss! But the fatigue - not there. Haven't taken anything for aches or pains in weeks...which is lovely. Appetite - pretty much normal, tho' I still have some of the odd cravings I had during tx. But I've only regained about 5lbs .. tho' with the Holidays approaching, I might have to be more disciplined. I haven't even 'celebrated' my 12-week SVR status with a toast yet, as other personal issues/problems have taken precedence. And for the most part, I have the energy to deal with those problems, and that includes physical AND mental energy, something of which I was in very short supply throughout my tx.
For those who feel they are no longer the "real persons" they once felt they were, I don't really know what to say. I know I'm not the 17-year old, or 24, or 36, or even the 42-yr old I once was. I'm now 52. And I think I have the energy of the average 52-yr old. I don't think I'll ever have the same energy or verve I had at those ages. (Hell, I know my RA pains started in my mid-30s, I just didn't know it at the time, but it wasn't enough to hamper me back then). All I know is, today, I feel I can lay to rest the fears I had a couple of months ago when I was anticipating a more negative result of this experience. While circumstances (mostly financial) haven't let me explore the alternative avenues to continue cleansing the meds out of my system as I planned, I also realize that my body is doing that anyway. But, just noticing .. and focusing .. on the positive aspects so far have gone a long way to my improvements both internal & external. Everyone around me has noticed how much better I look, sound and seem. And they're right. If I want to focus on the negative, I will likely feel that way, too. This attitude is something I learned from my many friends in the HIV+ community. Outside support is one thing that can go a long way to help, but it's important to remember to support ourselves internally, too, and that comes in very personal forms. I think as long as it's working for you, then it can only do good. But if I'm expecting this tx to be a magic bullet, or a 'restore' button that will transport me to my halcyon days of being an immortal 20-something, then I'm being unrealistic. And...that, I've discovered, has been something of a 'magic bullet'! Instead of taking on too many projects now I'm back at work, or working thru' my break 'cuz I've got the energy, or getting all my weeks' worth of grocery & meal-planning organized, and getting all the housework done in a couple of hours (and feeling like a failure if I didn't get all my To Do's done), I learned to let go...a lot! And I learned the world won't stop spinning, since it didn't this summer when my fatigue forced me to let go .. a lot! I shop less, eat less, drink water more, do less housework, hang out with my friends or kid more often, and if I try to honour my physical self more .. if I'm tired I actually rest or nap (I was never a 'napper' before). I prioritize what HAS to be done, and let go of a lot of stuff that really isn't essential.
So, while I can't recommend that anyone do .. or not do hcv tx, I can say that now, I do not regret my decision. Everytime I hear of someone who has died recently of liver cancer (which I know could be from any number of reasons besides hcv), I think, "that could be me...in 20 or so years", but I just don't think it will happen now.
I will try to remember to post something after my December f/up. My LAST post-tx appt will be March 2012. Maybe then I'll toast a celebration. I wish everyone else the best of luck wherever you are in your hcv journey.
This is my third tx. I was a non-responder the first time and a relapser the second. Both tx lasted about 6-7 months. I'm currently in triple tx with Vic. week 21. Non detectable weeks 8, 12 and 16. Experiencing significant side effects but I'm still working 90% of the time. I noticed no lasting side effects from the first txs using interferon and riba. I was still surfing at age 62 before I started this tx and I have scheduled a surfing trip to Central America 1 month after it is over.
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