Aa
Four months post Infergen torture
I'd like to post my current disposition four months after over-dosing on Infergen. Most know what' I've been through, the newbies should also know.
I was injecting 24mcg and 1200mg Ribavirin daily for three months. This was by far the worst and most fearful treatment of the four I've been through. The doctor was convinced that over-dosing would once and for all eradicate this invader. He was right, but he was shocked.
He was right that it was working greatly, bringing my count from 3.5 million to 6000 in two months. This is the lowest ever of the four treatments. 380,000 was the past lowest.
The problem then began when my ALT and AST went from the 80's to the 700's. My urine was very dark brown. After several blood works, his conclusion was that the mega-dose of Infergen was causing Hepatitis C. You read it right.
The dark urine was the Bilirubin imbalance. Had I continued to take the mega-dose for 48 weeks, I would have been in a coffin by now. Let this serve as a warning to all that over or mega-dosing can kill you!
Today, four months later, I still have residual effects such as brittle hair (lost my curls), shakes at times of anger, Reflux (25%), relapse of nausea and heat flashes, mind fog. I still have that gaunt, emaciated, and black under the eyes look.
Let me say that on the past three different traditional treatments, it did take my hair a good year to regain about 50% of my curls, as well as my looks, albeit they never came back to pre-treatment condition.
In conclusion, be very very afraid of over-dosing.
Magnum
I was injecting 24mcg and 1200mg Ribavirin daily for three months. This was by far the worst and most fearful treatment of the four I've been through. The doctor was convinced that over-dosing would once and for all eradicate this invader. He was right, but he was shocked.
He was right that it was working greatly, bringing my count from 3.5 million to 6000 in two months. This is the lowest ever of the four treatments. 380,000 was the past lowest.
The problem then began when my ALT and AST went from the 80's to the 700's. My urine was very dark brown. After several blood works, his conclusion was that the mega-dose of Infergen was causing Hepatitis C. You read it right.
The dark urine was the Bilirubin imbalance. Had I continued to take the mega-dose for 48 weeks, I would have been in a coffin by now. Let this serve as a warning to all that over or mega-dosing can kill you!
Today, four months later, I still have residual effects such as brittle hair (lost my curls), shakes at times of anger, Reflux (25%), relapse of nausea and heat flashes, mind fog. I still have that gaunt, emaciated, and black under the eyes look.
Let me say that on the past three different traditional treatments, it did take my hair a good year to regain about 50% of my curls, as well as my looks, albeit they never came back to pre-treatment condition.
In conclusion, be very very afraid of over-dosing.
Magnum
DR. FRANK FARIS = 240-2454 or 240-2452 FAX = 240-2455
Summit Medical Group, 3150 N. Tenaya, Suite 225, Las Vegas
Gastroenterologist - Hepatitis Specialist.
Good luck mikala. I know he really takes his time to talk to you and expresses a genuine interest in his patients.
Magnum
Summit Medical Group, 3150 N. Tenaya, Suite 225, Las Vegas
Gastroenterologist - Hepatitis Specialist.
Good luck mikala. I know he really takes his time to talk to you and expresses a genuine interest in his patients.
Magnum
Thanks for your info. We are able to get a referral for Dr. Faris today. My husband's appointment is not until October 4. we just want to ask second opinion about treatment. my husband is genotype 2, stage 1, grade 2. He has hemochromatosis too (iron overload). He started treatment March 2006 but had to stop after his 4 shots as he had operation for appendicitis. We didn't know if it's one of the side effects of the treatment. i rushed him to the hospital because of severe stomach pain. Dr. fayad told him to stop his treatment for 2 months to recuperate. Now he is ready to start treatment again. Would you please give me Dr. Faris phone number and his office address?
Thanks for your help. God bless.
Thanks for your help. God bless.
I went to see Dr. Joseph Fayad second. My first doctor was Dr. Frank Faris, who is again my main gastro. Dr. Fayad was too distant for me. He was more interested in talking about my performing (I'm and entertainer), than my treatment.
It was too vague for me and I went back to Dr. Faris, who I feel very comfortable with. Not to say Dr. Fayad isn't a good doctor, he's just not for me. Too bad because although he's Arabic, he graduated from medical school in Rome, and we spoke Italian together. He's actually a very worldly person and friendly, but I was there to take care of business, not to socialize. Good luck in your treatment...
Magnum
It was too vague for me and I went back to Dr. Faris, who I feel very comfortable with. Not to say Dr. Fayad isn't a good doctor, he's just not for me. Too bad because although he's Arabic, he graduated from medical school in Rome, and we spoke Italian together. He's actually a very worldly person and friendly, but I was there to take care of business, not to socialize. Good luck in your treatment...
Magnum
I can't believe 7 rds. of therapy! You are obviuosly dedicated to ridding yourself of this bizarre disease. I applaud you. I have done the 100 wks.(48 peg-intron&riba), 52 infergen/riba)also 16 wks. of pegasys maintainence. I am finished with the interferons. My Doctor says that my body just totally will not accept them. At the present time, my quality of life is more important. He has suggested that I would have 10 more yrs., before we would have to revisit this again.
I wish you the very best and I know that with your strong dedication and faith, you will become the victor!
May God bless you and keep you in his hands.
Sandy
I wish you the very best and I know that with your strong dedication and faith, you will become the victor!
May God bless you and keep you in his hands.
Sandy
Hi, i just want to ask you who is your doctor right now. I'm from Las vegas and my husband is currently seeing Dr. Fayad. Thank you.
Sandy,
I wish you the best with your next treatment. Yes, I'm left with after effects. I'm hopeful someday that they'll go away. I'm not allowed to treat anymore with just interferon(s)/ Riba course. Doctor stopped me and said, after 7 full treatments, no more until they come up with some other drugs to go with it. He said that my body has developed interferon and ribavirin resistance. Also, I have type 1A/1B so there's two strains that need to be zapped at once. He said that I may some day need possibly up to 4 drugs to deal with just the hep. Such as for example: Interferon, Riba, + 2 other antivirals and/or protease inhibitors. Like how they do with HIV/AIDS patients, even though I don't have HIV/AIDS. Anyway, for now, I'm hoping that God with heal me and that I'll need no more nasty medicines for the Hep C at least.
Susan
I wish you the best with your next treatment. Yes, I'm left with after effects. I'm hopeful someday that they'll go away. I'm not allowed to treat anymore with just interferon(s)/ Riba course. Doctor stopped me and said, after 7 full treatments, no more until they come up with some other drugs to go with it. He said that my body has developed interferon and ribavirin resistance. Also, I have type 1A/1B so there's two strains that need to be zapped at once. He said that I may some day need possibly up to 4 drugs to deal with just the hep. Such as for example: Interferon, Riba, + 2 other antivirals and/or protease inhibitors. Like how they do with HIV/AIDS patients, even though I don't have HIV/AIDS. Anyway, for now, I'm hoping that God with heal me and that I'll need no more nasty medicines for the Hep C at least.
Susan
I am another who has gone through treatment twice and relapsed.
Magnum, you must be one strong person to take the dosages you took. I took daily infergen injections and only 800 mg. riba, and it did a number on me. Susan, I know exactly what you are saying about the heat. I did not experience this throughout treatment, only post. I literally perspire and that's a kind word for what really happens, whenever I do anything. I am drenched. Also, insomnia has been a problem throughout the past 3 yrs. I am now taking Remeron which lets me get at least 7 hrs. of sleep. The funny thing is that most of my energy comes at night. I rarely go to bed before 1 a.m. I have been left with several side effects and I have been off treatment for 8 mths. Neuropathy is the worse, I guess. Several times a day my feet and legs go completely numb. I either find a seat fast or fall. I am taking PT and I think it is building up some stregth. I was at the point that I couldn't even get up off a chair, without horrible pain. My labs are pretty much in line, but my ast and alt are beginning to flair again. I just had a VL, and it was at 16,000. (was 40,000,000) So at least the two rounds of therapy has done some help, but has done damage also. My last labs showed cryoglobulin and a tumor marker of 33. Now more interferon for me, it has taken away my quality of life. My question to you both is what kind of side effects were you left with? I know that someday there will be a cure and I hope that all of us who have been through so much will benefit from it.
Sandy
Magnum, you must be one strong person to take the dosages you took. I took daily infergen injections and only 800 mg. riba, and it did a number on me. Susan, I know exactly what you are saying about the heat. I did not experience this throughout treatment, only post. I literally perspire and that's a kind word for what really happens, whenever I do anything. I am drenched. Also, insomnia has been a problem throughout the past 3 yrs. I am now taking Remeron which lets me get at least 7 hrs. of sleep. The funny thing is that most of my energy comes at night. I rarely go to bed before 1 a.m. I have been left with several side effects and I have been off treatment for 8 mths. Neuropathy is the worse, I guess. Several times a day my feet and legs go completely numb. I either find a seat fast or fall. I am taking PT and I think it is building up some stregth. I was at the point that I couldn't even get up off a chair, without horrible pain. My labs are pretty much in line, but my ast and alt are beginning to flair again. I just had a VL, and it was at 16,000. (was 40,000,000) So at least the two rounds of therapy has done some help, but has done damage also. My last labs showed cryoglobulin and a tumor marker of 33. Now more interferon for me, it has taken away my quality of life. My question to you both is what kind of side effects were you left with? I know that someday there will be a cure and I hope that all of us who have been through so much will benefit from it.
Sandy
I can't get over your awful ordeal, I have been treating for 6 weeks and half of me wanted to ask the doc if I should have more Riba, I don't have all the sx I should have I'm on 1200 mg of Riba, My labs are all within normal range, but after reading your story I have reconsidered, I take less sx, I'll know the 12th, how it working. Take care of yourself.
Diana
Diana
Insomnia... Yes. I'm now averaging 5 hrs. per night and I don't like it. Although I have a Medical Marijuana card, I don't want to smoke anything except at night to fall asleep, not in the morning when I wake up for no reason. Falling asleep is fine, but staying asleep is another matter. Have you tried Marijuana? Maybe you should ask your doctor. That was precisely one of the reasons he prescribed it. Good luck and.... happy dreams.
Magnum
Magnum
Dear Magnum,
I think you probably remember me. I'm that lady that treated a bunch of times. The last round was with the mega-dose of Ribavirin (1600 mg a day) and the daily Infergen. I never made it to remission, but I got close. I would have pushed on another few months to see if I'd clear it, but my Infergen/Riba prescription was up for renewal and my doctor said, "Stop". He told me that if I hadn't cleared 45 weeks that it wouldn't "stick" anyways. So, 8 weeks ago, I stopped treatment. 4 months and you're still having the hot flashes?? Darn! I am sick of them already and I've only had 2 mon. off. My other treatments I never had this much flashing post treatment. What's up with that? My brain still doesn't want to function right, but it didn't function right 5 years ago because of my other treatments. At least I'm not getting mad quite as easy as I did when I was on all that Riba 2 mon. ago. But, I know that it won't be all the way out of my system for another 4 mon. at least. What about insomnia? Are you troubled with that? I AM. When I was on treatment, I never had a problem with sleep really, most of time and now, post treatment I've had it a lot. During treatment, I was always cold, didn't get the hot flashing, not post, get it a lot. It's weird because I run the A/C cold and I can still be burning up. And in the middle of the night it seems to hit me bad, too. I sure hope the heat thing goes away by the 5-6 mon. point!! At least by then, it will be cooler out and maybe I can deal with it better. Take care, remember I'm with you in post-treatment blues!
Susan
I think you probably remember me. I'm that lady that treated a bunch of times. The last round was with the mega-dose of Ribavirin (1600 mg a day) and the daily Infergen. I never made it to remission, but I got close. I would have pushed on another few months to see if I'd clear it, but my Infergen/Riba prescription was up for renewal and my doctor said, "Stop". He told me that if I hadn't cleared 45 weeks that it wouldn't "stick" anyways. So, 8 weeks ago, I stopped treatment. 4 months and you're still having the hot flashes?? Darn! I am sick of them already and I've only had 2 mon. off. My other treatments I never had this much flashing post treatment. What's up with that? My brain still doesn't want to function right, but it didn't function right 5 years ago because of my other treatments. At least I'm not getting mad quite as easy as I did when I was on all that Riba 2 mon. ago. But, I know that it won't be all the way out of my system for another 4 mon. at least. What about insomnia? Are you troubled with that? I AM. When I was on treatment, I never had a problem with sleep really, most of time and now, post treatment I've had it a lot. During treatment, I was always cold, didn't get the hot flashing, not post, get it a lot. It's weird because I run the A/C cold and I can still be burning up. And in the middle of the night it seems to hit me bad, too. I sure hope the heat thing goes away by the 5-6 mon. point!! At least by then, it will be cooler out and maybe I can deal with it better. Take care, remember I'm with you in post-treatment blues!
Susan
I hope this is a lesson we all can learn from, and i am so sorry for all you are going through..shelly
I hope this is a lesson we all can learn from, and i am so sorry for all you are going through..shelly
I hope this is a lesson we all can learn from, and i am so sorry for all you are going through..shelly
You know how grateful I am that I haven't had to do this treatment (yet). If I don't succeed SVR this time I HATE what happened to you but am glad that I read it all so I know NOT to do the mega doses.
What you've contributed has been so worthwhile to us. But not worth what you have had to go through.
I'm glad that you have most of your great looks back though :) that has to feel good!
Just ask mme who still lives in Balding Skeleton Girl, Werewolf PeachFuzz (thank God for tweezers is my motto) Face land ;)
What you've contributed has been so worthwhile to us. But not worth what you have had to go through.
I'm glad that you have most of your great looks back though :) that has to feel good!
Just ask mme who still lives in Balding Skeleton Girl, Werewolf PeachFuzz (thank God for tweezers is my motto) Face land ;)
I can't imagine how terrifying that must have been. It seems grossly negligent of the doctor to treat with such mega doses like that and nearly kill you. Even if a patient is willing to do such a thing the doctor has a responsibility to not allow such dangerous experimental treatments. Is he still your doctor? I hope your health continues to improve and you get your curls back.
I feel for you and can't imagine the h*ll your going through. your 4 months opost tx and still feeling like this. I think what happened to you is a good lesson what can happen when we over dose.
Thanks for the advise, well taken.
I hope you start feeling better soon.
Beagle
Thanks for the advise, well taken.
I hope you start feeling better soon.
Beagle
Holy Cow Magnum. I had no idea what you were going through.
Thank you for sharing that . It just goes to reinforce my beliefs that just because they are doctors , doesn't mean they are correct and certainly doesn't mean they "do no harm" .
God speed to the end of the nightmare.
Mark
Thank you for sharing that . It just goes to reinforce my beliefs that just because they are doctors , doesn't mean they are correct and certainly doesn't mean they "do no harm" .
God speed to the end of the nightmare.
Mark
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