Aa
I don't know how long I can do this treatment
Hi all! I don't know how long I can do this treatment. for 6 months I did the Pegasis & Ribaviren, then the doc switched me to Infergen shots dailey and rivaviren. I feel so ill after the shot and run a low feverand terrible aches and pains during the day. Any perk I have goes to work and by the time I get home its time to get the flu. Its getting hard to cope with and I just want to stop and try again in a couple of years. I feel like a big quitter but my kids are pretty much raising theirselves and I am definatley not there for my husband. Do peaple ever stop treatment and try again at a later time? I just don't know what to do.
Thank you for sharing that, merrybe. Those of us that are non-responders need all the help we can get!!! I have been out of the loop for awhile and have not heard anything regarding IR/interferon. I see that I've got some catching up to do!!
I'm wondering Rose if anyone has talked to you about your blood sugars or Insulin resistance.
If you have not read the thread in here on this, you really need to. Or you can read them on CoWriters home page.
What used to always be explained as "you have a resistant strain" has changed in the last 2 years.
Now there is much new research showing that even mildly elevated insulin levels will cancel out the interferon, and hence hinder the tx. from working as it should.
In some studies IR people has 30% less success getting UND so this is really something to have check NOW. It could mean the difference between getting UND and has shown at least 10% better rates of SVR in people also.
All the science is just now becoming clear, but it's very exciting to think something that can be corrected could be the hindrance, and not just an "incurable strain" is the answer.
mb
If you have not read the thread in here on this, you really need to. Or you can read them on CoWriters home page.
What used to always be explained as "you have a resistant strain" has changed in the last 2 years.
Now there is much new research showing that even mildly elevated insulin levels will cancel out the interferon, and hence hinder the tx. from working as it should.
In some studies IR people has 30% less success getting UND so this is really something to have check NOW. It could mean the difference between getting UND and has shown at least 10% better rates of SVR in people also.
All the science is just now becoming clear, but it's very exciting to think something that can be corrected could be the hindrance, and not just an "incurable strain" is the answer.
mb
I'm not sure if I'm weighing in too late but I will anyway. You've gotten some good advice here regarding the direction of your tx, but no one mentioned the one thing that I heard loud and clear when I read your post. I'm talking about your concern for your children and husband. You know Rose, I'll bet your family doesn't mind at all doing for themselves for a few months, especially if they know how important it is in aiding you to get your health back on track. Talk to your husband. Talk to your children, and then talk to them all. You need them and their support, and they need for you to be well. Remember, tx doesn't last for ever and some of us have been on it for many, many weeks. Only you know your body well enough to know what it can handle. So take care my friend, what ever your decision might be. My prayers are for you.
why would they switch you to infergen in the middle of treating, i just don't understand. if you're determined to finish this thing then i say go for it, if you're willing to push through. determination is huge mentally. from week 30-45, i was hit with all kinds of problems, had to be on neupogen shots that gave me headaches, i was allergic to tylenol suddenly, i had to take procrit for anemia, had to be on iron vitamins, resting heart rate was 120bpm, had to take heart pills twice a day, and be on thyroid pills 3 times a day, during all this i'm a full time student in college, and now i have to go take 6 finals with the swine flu killing 2 people already in my state. but you know what? i'm feeling great today, i just hit shot 47 last night and never realized i was so close, one more week until my last shot!
if you have the determination to move on and if you're able to handle this mentally and physically, i'm cheering you on full time
if you have the determination to move on and if you're able to handle this mentally and physically, i'm cheering you on full time
I'm sorry you had to stop treatment. Do you mind sharing what the side effects were that were severe enough that you had to stop? I'm curious why treatment with interferon is out of the question. Was that because of the side effects the interferon caused?
At what points were you tested up to that 8 week mark and what were the results?
Again, I'm sorry you had to stop treatment. I'm glad you are able to remain hopeful.
Trish
At what points were you tested up to that 8 week mark and what were the results?
Again, I'm sorry you had to stop treatment. I'm glad you are able to remain hopeful.
Trish
yes it was UND and my doc was hopeful but it was a coin toss that I would remain UND. Unfortunately, I did not remain UND
Yes it was my first time for treatment. The genotype, forgive me for not having my paperwork on hand, is the most common and the hardest one to get rid of according to my doctor.
Yes I had a biopsy done and my liver is at a 2.
I was recently seen at the university of Denver and was told that any treatment with interferion is out of the question for me.
No I do not mind you asking questions. Sharing our experiences and success stories is why we are all here isn't it? Just because at this time there isn't any treatment that will work for me doesn't mean I'm going to give up. Hearing all the success stories gives me hope.
I just hope that by sharing my brief experiences on this treatment will help others.
Yes it was my first time for treatment. The genotype, forgive me for not having my paperwork on hand, is the most common and the hardest one to get rid of according to my doctor.
Yes I had a biopsy done and my liver is at a 2.
I was recently seen at the university of Denver and was told that any treatment with interferion is out of the question for me.
No I do not mind you asking questions. Sharing our experiences and success stories is why we are all here isn't it? Just because at this time there isn't any treatment that will work for me doesn't mean I'm going to give up. Hearing all the success stories gives me hope.
I just hope that by sharing my brief experiences on this treatment will help others.
"I was told after I am sorry, 8 weeks of treatment that my virus level showed NEG. After I had to get off the treatment due to my side effect issues and several weeks later... my viral load was checked again and it was higher then pre treatment. From what I understand, it wasn't completely gone and came back with a vengeance. I just had my blood work checked again and my viral levels are still there but better then they were. I am sorry if I didn't explain myself better the first time. "
Did your doctor indicate that because you were NEG as you call it - otherwise known as UND for undetectable - that the virus was gone and that it wouldn't impact you if you stopped treatment? Is this your first time attempting treatment? And wondering what genotype you are and if you had a biopsy, and if yes, what stage of liver damage are you at? Hope you don't mind the questions.
Trish
Did your doctor indicate that because you were NEG as you call it - otherwise known as UND for undetectable - that the virus was gone and that it wouldn't impact you if you stopped treatment? Is this your first time attempting treatment? And wondering what genotype you are and if you had a biopsy, and if yes, what stage of liver damage are you at? Hope you don't mind the questions.
Trish
I was told after I am sorry, 8 weeks of treatment that my virus level showed NEG. After I had to get off the treatment due to my side effect issues and several weeks later... my viral load was checked again and it was higher then pre treatment. From what I understand, it wasn't completely gone and came back with a vengeance. I just had my blood work checked again and my viral levels are still there but better then they were. I am sorry if I didn't explain myself better the first time.
If you are still having problems following me... I am sorry. I did my best to explain what I was told. I wish that I could explain it better.
If you are still having problems following me... I am sorry. I did my best to explain what I was told. I wish that I could explain it better.
I'm not an expert at making calls on treatment.
But, some of the best of the forum (NYgirl7,jmjm, trinity4 etc.) have given you sound advice that you can probably take to the bank.
I agree it's time for a second opinion.
Rosebud41
But, some of the best of the forum (NYgirl7,jmjm, trinity4 etc.) have given you sound advice that you can probably take to the bank.
I agree it's time for a second opinion.
Rosebud41
I have been on infergen for over 74 weeks already, I have till 30 may. I have done most tx, this is beyond anything I have ever done. You need to know why your doing it, have courage and be ready for it it to get tougher for every month.
I am not trying to scare you, just let you know it is tough,
It is beyond hard, my heart goes out to you. It is a hard tx, very few make it through.
I have been tempted lately to stop now, to hard. I only have two months left!
But you do need another opinion, as was stated above, find out why they are suggesting this? You need to advocate for your self, Wishing you the best of luck which ever way you go.
If I can help please no hestitation ask!
Deb
I am not trying to scare you, just let you know it is tough,
It is beyond hard, my heart goes out to you. It is a hard tx, very few make it through.
I have been tempted lately to stop now, to hard. I only have two months left!
But you do need another opinion, as was stated above, find out why they are suggesting this? You need to advocate for your self, Wishing you the best of luck which ever way you go.
If I can help please no hestitation ask!
Deb
I agree wholeheartidly with the others. If you were still UND at 24 weeks I'm surprised a doctor would switch you over without a break first. It's not just about getting TO UND but it's also about training our immune systems to do this work. You need the proper length of time for this to happen. If it were just about getting to UND we would all quit as soon as that happened. I was UND somewhere between 12 and 24 and had to extend to 72 weeks because I got there so late. I don't think you really want to go to week 72 on Infergen but honestly - that is pretty much what would be necessary right now.
Without having a good biopsy to determine if this hard core treatment is really necessary right now (hey you could luck out and have very miminal liver damage) - I'm not sure if it would be that urgent to go for that long........or to wait, make a few adjustments to the meds and try to get you to UND in the proper amount of time?
I would definitely find a qualified specialist for this one.
I wish you all the luck in the world. ♥
Without having a good biopsy to determine if this hard core treatment is really necessary right now (hey you could luck out and have very miminal liver damage) - I'm not sure if it would be that urgent to go for that long........or to wait, make a few adjustments to the meds and try to get you to UND in the proper amount of time?
I would definitely find a qualified specialist for this one.
I wish you all the luck in the world. ♥
The GOOD news is that the treatment worked. at 4 weeks I was neg of the virus.
Since I got off the treatment, my vision has come back, my Thyroid is out of wack and am on synthroid for it. MY virus load is higher now then pre treatment..
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Respectfully, This may be the most perplexing post I've ever read......how did the treament work AND result in a higher viral load???
Since I got off the treatment, my vision has come back, my Thyroid is out of wack and am on synthroid for it. MY virus load is higher now then pre treatment..
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Respectfully, This may be the most perplexing post I've ever read......how did the treament work AND result in a higher viral load???
if you are still detectable at 6 months it does not mean you couldn't still get to SVR...but what it does mean, is you cannot get there in 3 months.
The SOC for type 1 Genos that are SLR (super late responders) is to treat them out for at least a year after going UND. This is why in this forum you will see people who treated for 72, 80, or even 92 weeks. I'm in week 78 myself.
The thing to remember is that treatment is going to have some times when you really don't think you can take another day. I had some weeks like that early on, and again around the one year mark. It's different for everyone.
Not knowing your stage grade makes it hard to advise beyong what's above, the biopsy, and 2nd opinion. However if you decide you want to tough this out it sounds like you need to be on an anti-depressant. Many people quit because their emotions are raw, not just because of the flu symptoms.
My heart goes out to you, with kids and work both, I don't believe I could have held out,
but you need to know really well that your liver can last a while before you make a choice.
Also, there was a recent thread on the compassionate use of teleprevir.
Magnum started the thread 2 days ago or so, and the FDA answered his inquiry, so this might be an option for you as well if you had to stop tx now, but you'd have to look into it.
Also you need to check with your insurance as to what happens if you try to treat again later. Some insurances will pay for it, some will not.
I hate to even type such things but they are things you need to explore and weigh into your final choice.
my best to you.
mb
The SOC for type 1 Genos that are SLR (super late responders) is to treat them out for at least a year after going UND. This is why in this forum you will see people who treated for 72, 80, or even 92 weeks. I'm in week 78 myself.
The thing to remember is that treatment is going to have some times when you really don't think you can take another day. I had some weeks like that early on, and again around the one year mark. It's different for everyone.
Not knowing your stage grade makes it hard to advise beyong what's above, the biopsy, and 2nd opinion. However if you decide you want to tough this out it sounds like you need to be on an anti-depressant. Many people quit because their emotions are raw, not just because of the flu symptoms.
My heart goes out to you, with kids and work both, I don't believe I could have held out,
but you need to know really well that your liver can last a while before you make a choice.
Also, there was a recent thread on the compassionate use of teleprevir.
Magnum started the thread 2 days ago or so, and the FDA answered his inquiry, so this might be an option for you as well if you had to stop tx now, but you'd have to look into it.
Also you need to check with your insurance as to what happens if you try to treat again later. Some insurances will pay for it, some will not.
I hate to even type such things but they are things you need to explore and weigh into your final choice.
my best to you.
mb
I wish you well on the Infergen shots daily and rivaviren. I had to stop after 10 weeks due to the treatment, I lost my eyesight in NOV 08. My experience with the treatment was a new side effect every week. The GOOD news is that the treatment worked. at 4 weeks I was neg of the virus.
Since I got off the treatment, my vision has come back, my Thyroid is out of wack and am on synthroid for it. MY virus load is higher now then pre treatment..
There is a lot of good if you are successful with the treatment. I know the pain.... Good Luck
Since I got off the treatment, my vision has come back, my Thyroid is out of wack and am on synthroid for it. MY virus load is higher now then pre treatment..
There is a lot of good if you are successful with the treatment. I know the pain.... Good Luck
I agree with the excellent advice given by all the others. On the other hand, if you only have two months to go and your results are looking positive after you have researched and got a complete picture of your treatment options and progress, I think two months could be manageable. The best thing I did was cut my work hours and try to sleep and rest as much as possible and reduce any stress at all. You have gone so far. Even if I feel Ok, I still just lie around and read my book, keeping my body and mind as free and as relaxed as possible. It helps me cope much better. I am sorry you are having such a hard time - treatment is so difficult and harder than those around us can really understand.
You started this thread by saying that you don't know what to do which I assume is the same as asking for opinions. Without rehasing the particulars, the opinions here overwhelmingly suggest you seek a second medical opinion. I assume that if you had 100% faith in your current doctor you wouldn't be reaching out. Do yourself and get that second opinion now. I'm assuming the sample wasn't large enough, but you still should have a copy of the biopsy report. If not, try and get your own copy and let us know what it says if you want, but certainly bring it (along with the original slide set) if you decide to have a consult with another hepatologist.
--- Jim
--- Jim
Curious what made it not a very good sample?
That's two months with daily Infergen. I'd like to see you get a liver biopsy again, a decent one, asap. And a second opinion thrown into the mix with a good hepatologist connected with a teaching hospital.
As GoofyDad says, there may be some justification for extreme measures with advanced liver damage. An *accurate* assessment of liver damage is always the key when making treatment decisions along with other factors in companion with this but not the absence of this detail.
Please ask for another liver biopsy asap, Rose - and get copies of everything.
Trish
That's two months with daily Infergen. I'd like to see you get a liver biopsy again, a decent one, asap. And a second opinion thrown into the mix with a good hepatologist connected with a teaching hospital.
As GoofyDad says, there may be some justification for extreme measures with advanced liver damage. An *accurate* assessment of liver damage is always the key when making treatment decisions along with other factors in companion with this but not the absence of this detail.
Please ask for another liver biopsy asap, Rose - and get copies of everything.
Trish
Thanks you all for responding!
I did have a liver bio, but not a very good one. I had a hysterectomy and the sample was taken at the same time. It wasn't a very good sample. My Doc wants to try this for three months and if it is not undetectable by then, he wants to wait for the new drugs. I just dont know if I can make till the end of May.
Thanks again
I did have a liver bio, but not a very good one. I had a hysterectomy and the sample was taken at the same time. It wasn't a very good sample. My Doc wants to try this for three months and if it is not undetectable by then, he wants to wait for the new drugs. I just dont know if I can make till the end of May.
Thanks again
It all depends on the condition of the liver. If it's in bad shape - well then you could justify going to extraordinary measures to clear the virus, even against long odds. But if there's not a great deal of accumulated damage to your liver, it would be wise to stop treatment and try again with a new class of drugs in a few years or so.
Hi Rose, I echo what everyone above has said about seeking a second opinion.
In answer to your question re stopping tx and waiting for awhile - that is certainly a good option as there are several promising drugs in trials.
I first treated 5 years ago with IFN & Riba and was still detectable at 24 weeks. Treatment was stopped and I was considered a null responder.
I was able to get on a PI trial for non-responders in May last year and I became undetectable within 4 weeks. I've been treating with IFN & Riba for 44 weeks now and I'm still UND.
So, with the help of a new drug, I was able to go from non-responder to responder!! Fingers crossed for SVR!
Don't give up hope!
Epi :)
In answer to your question re stopping tx and waiting for awhile - that is certainly a good option as there are several promising drugs in trials.
I first treated 5 years ago with IFN & Riba and was still detectable at 24 weeks. Treatment was stopped and I was considered a null responder.
I was able to get on a PI trial for non-responders in May last year and I became undetectable within 4 weeks. I've been treating with IFN & Riba for 44 weeks now and I'm still UND.
So, with the help of a new drug, I was able to go from non-responder to responder!! Fingers crossed for SVR!
Don't give up hope!
Epi :)
I agree with the others. If you're still detectible six months after starting treatment then you owe it to yourself to get another opinion whether or not treating any more will be helpful. If youre already seeing a hepatologist, then consult with another one at a different hospital. If youre not seeing a hepatoloigst (liver specialist) then seek one out.
--- Jim
--- Jim
I'm wondering how long ago you had a biopsy, Rose and what the results of that were? As in what stage / grade you are, if you don't mind the asking.
Trish
Trish
I have to agree with HCA on this one Rose. Get a second opinion. Infergen is by far the most difficult of all treatments and with detectable virus at wk 24 your odds of clearing the virus are greatly diminished.
Has your doctor suggested treating you for 72 wks total and have you had a recent PCR? I don't know what month of treatment you are in but if you are still detectable and the Infergen is causing extreme side effects I would seriously consider waiting and treating with PI's if your liver health will allow it.
I'm going 72 wks and if I don't SVR my doc suggested a 6 month break and then treat with Infergen. I will not do it even though my liver stage is late 3. I will wait for the PI's which give a much greater chance of clearing the virus. Triple therapy (the addition of a PI comes with it's own set of side effects but hopefully by the time it becomes the new SOC they will have worked out some of nasty and treatment time will be shorter.
Tough call Rose and my heart goes out to you. One of my dearest friends is treating with Infergen and it has been a patch of hell for her. I wish you the best going forward.
Listen to your body, it usually tells you what to do before the brain figures it out.
Trinity
Has your doctor suggested treating you for 72 wks total and have you had a recent PCR? I don't know what month of treatment you are in but if you are still detectable and the Infergen is causing extreme side effects I would seriously consider waiting and treating with PI's if your liver health will allow it.
I'm going 72 wks and if I don't SVR my doc suggested a 6 month break and then treat with Infergen. I will not do it even though my liver stage is late 3. I will wait for the PI's which give a much greater chance of clearing the virus. Triple therapy (the addition of a PI comes with it's own set of side effects but hopefully by the time it becomes the new SOC they will have worked out some of nasty and treatment time will be shorter.
Tough call Rose and my heart goes out to you. One of my dearest friends is treating with Infergen and it has been a patch of hell for her. I wish you the best going forward.
Listen to your body, it usually tells you what to do before the brain figures it out.
Trinity
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