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Avatar universal

Is telaprevir treatment worth all this?

Is this triple therapy worth the problems I am seeing post tx?  Treatment is bad enough and now post tx issues look worse.  Is there anyone on this forum that completed triple with telaprevir and doing well?  I need to hear from you.  First week of treatment and this forum and the internet in general have me considering stopping treatment.  This is my 3rd attempt and wondering if it is really worth it.  
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Avatar universal
Hi Dee.

I have chronic hep c genotype 1a. I was a non-responder with peginterferon/ribavirin, so with telaprivir I would have had to do 48 weeks.

I don't know about the drug situation in America, but I can assure you that in England in 1 to 2 years, a single drug taken once a day will be on the market for people like us who have genotype 1a. (In my case when diagnosed I had moderate fibrosis). My hep c Consultant Dr. offered me the choice of going ahead with triple therapy, or waiting 1 to 2 years for the new SINGLE drug to be licensed.

Also, there is a vaccine undergoing trials, but this could take quite some time.

All the very best,

Malcyboy.

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317787 tn?1473358451
DUH...old post arggh!
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317787 tn?1473358451
Hi it is not just about the liver, there is kidney failure which Natalie Cole who has HCV experienced.
Diabetes and low thyroid.  Fatigue, depression, hepatic encephalapathy, cyroglobulinema

I think that post tx sx are from the interferon though I could be wrong

The Incivek completely changed tx for me.  It was rough however I had cirrhosis and was told that it would be harder for me because of that.
I am no SVR and am so happy I treated.
I have not felt this good in a very very long time.

If you have little to no damage you could wait.  Tx should be based on the individual, the Geno type, the damage to the liver, the activity of the HCV, the age of the person, the extra hepatic manifestations should all be weighed before deciding to tx.

My best to you, Dee
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317787 tn?1473358451
I tried to see when you finished tx.  If it has been in the past year there is hope.  It took me a year to recover.  15 months to be happy.  I hope that you have just finished your tx and that you can still have hope to get better.

As you yourself experienced the Inf and Riba doesn't work for everyone and I was told it  only work for 40% of geno types 1A and 1B add cirrhosis and I don't know the number

There will be a pill available for Geno types 2 and 3.sometime next year (we hope)....but for Geno 1A and B it will still include inf so there is no drug coming down the line for people like me who were a 1A.
The incivek was it, I was diagnosed with cirrhosis in late 2008, told if I did not treat and get rid of HCV I would need a transplant in 5 to 10 years.  I was feeling like hell, I had relapsed from a 48 tx in 2009.  I took my chance because I knew I did not want to live like that. I had swollen, painful, bruised legs from cryoglobulinemia was tired all the time, etc

I do agree that if someone has little to no damage they could afford to wait.for a new drug coming but the one for next year will still include inf and riba
I hope that you will feel better every day.

Dee
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Avatar universal
I've had interferon/rib. before, not pleasant, but never any post x problems. But since tealaprivir, (I finished the 12 weeks) I stopped treatment altogether shortly afterwards. I tolerated the telaprivir, but 4 weeks after, I developed a severe rash over my whole body. I was hospitalised and put under 24 hour observation, as I was told with the telaprivir rash, the body is at risk of "total body shut down." I did not get all this on the internet, it came from my Hep C Consultant. If you read these things on the internet or not the internet, if you are going to get them, you are going to get them. Man, I tell you , the joint pain I get is painful too. I was put on morphine and other strong pain killers, but they did not help the joint pain at all. So please do not minimize the risk of telaprivir; It has been proven to be very successful, but the risks are pretty severe. It is up to the individual what is likely to give them the best quality of life. Personally, I would prefer to feel good for 5-10 years, than to suffer 20 years of misery!

I live in the London, England (UK). Doctors and scientists here are very well informed on  the post side effects of telaprivir. Many agree that this drug should be used mainly for those with severe life threatening Hep C. Also, in 1 to 2 years a new drug should be licenced, where you take one tablet daily with few side effects. Scientists are saying that the new drugs, telaprivir and boceprivir are going to be very short lived. So if you can hang on and wait, please wait. I was given the choice of waiting, as my liver was doing ok, but being impatient, I chose the triple therapy. I know in America it is all about money and insurance. In England we have the world famous National Health Service (NHS), where medical treatment is free to all, no exceptions.

God bless you all in your individual struggles.

malcyboy.
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Avatar universal
I've had interferon/rib. before, not pleasant, but never any post x problems. But since tealaprivir, (I finished the 12 weeks) I stopped treatment altogether shortly afterwards. I tolerated the telaprivir, but 4 weeks after, I developed a severe rash over my whole body. I was hospitalised and put under 24 hour observation, as I was told with the telaprivir rash, the body is at risk of "total body shut down." I did not get all this on the internet, it came from my Hep C Consultant. If you read these things on the internet or not the internet, if you are going to get them, you are going to get them. Man, I tell you , the joint pain I get is painful too. I was put on morphine and other strong pain killers, but they did not help the joint pain at all. So please do not minimize the risk of telaprivir; It has been proven to be very successful, but the risks are pretty severe. It is up to the individual what is likely to give them the best quality of life. Personally, I would prefer to feel good for 5-10 years, than to suffer 20 years of misery!

I live in the London, England (UK). Doctors and scientists here are very well informed on  the post side effects of telaprivir. Many agree that this drug should be used mainly for those with severe life threatening Hep C. Also, in 1 to 2 years a new drug should be licenced, where you take one tablet daily with few side effects. Scientists are saying that the new drugs, telaprivir and boceprivir are going to be very short lived. So if you can hang on and wait, please wait. I was given the choice of waiting, as my liver was doing ok, but being impatient, I chose the triple therapy. I know in America it is all about money and insurance. In England we have the world famous National Health Service (NHS), where medical treatment is free to all, no exceptions.

God bless you all in your individual struggles.

malcyboy.
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317787 tn?1473358451
I am 14 months post EOT and SVR, SVR
It was hell as I have cirrhosis, would I do it again? In a heart beat
I thank God I am SVR only had to do 24 weeks.
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Avatar universal
I am in my 8th week of TX and its been rough
I'm like the poster boy for all the incivek SX
Rash from head to toe always Nauseous and tired
Itchy skin dry mouth Thrush just basicly feel like crap all the time
I look at this way , it's working , I'm almost done with it , it's going to save my life ,hopefully I'll never have to treat again
So **** it I'm going to keep going !!
Good luck
You can do it !!
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Avatar universal
I was a relapser 4 years ago, went through teleprevir treatment starting Sept 2011.  Side effects were bad, very bad, hallucinations, CBCs in the basement, mental acuity gone, taste altered, pneumonia (hospitalized), hearing and eyesight impaired.  Would I do it again?  Hell yes!  I am 1 yr post-tx UND!  I could not work, but buckled down and did it with the help of my family.  Just do it.  The alternative is unacceptable.
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1815939 tn?1377991799
First, I am sorry to hear about the outcome of you marriage. I Know that must have been very difficult.

Any side effects you get, please post them here if they are giving you problems. We may know a good remedy for the side effect. There is wealth of knowledge among the forum members and everyone is willing to help.

As far as the problematic side effects are concerned, if you get them, get on top of them right away and treat them aggressively/ They can and will snowball out of control if not addressed in a timely manner.

If you are depressed, tell your doctor and get an urgent referral to see a psychiatrist. (Your doctor may order antidepressants for you but if you get severely depressed, you should see a psychiatrist. The Interferon causes Depression and, if you are not already on antidepressants, you most likely should be. Please see your doc about this, Depression and be lethal.

If you are nauseated you can get a prescription for an anti nausea drug. I used Zofran every 8 hours and that worked a miracle for me.

If you get a rash, get that under control right away. You may need prescriptions for it. I had a bad rash and took the following prescription drugs:  Hydoxyzine 50 mg every 6 hours, fluocinonide ointment on the rash, clobetesol soln. on the scalp and neck. The topical helped, but it was the Hydroxyzine that really got the rash under control. (The over the counter meds were totally useless against this rash.) The main point here is, do not let it go, it will get worse. You may have to be assertive with your doc. Many of the docs do not take the rash seriously and they do not order strong enough drugs for it. We have had forum members who had to stop TX due to the rash  and or due to inadequate, inappropriate, and delayed treatment of the rash.

Blood count issues:
Severe anemia, low neutrophil count, and low platelets can be treated with Procri (anemia), Nupogen (low neutrophils), and Promacta (low platelets).

If you are on Incivek, you may get rectal problems. Keep the stools firm and you should have fewer problems. Keeing my stool quite firm took care of the severe anal issues I was having (crapping shards of glass). I used Loperimide as needed.)

If you have vision problems/eye problems such as eye pain, loss of partial or total vision in one eye, a lot of floaters, or there seems to be a half pulled drape over you field of vision, see an opthamologist immediately. It could be a retinal bleed or tear and you could lose your eyesight if you ignore it.

The above listed side effects can be game changers if they are not addressed immediately and appropriately.

Most of the other side effects we cannot do much about. Maybe Tylenol for aches and pain if it okay with you MD. If your memory gets goofy, we have remedies for that too, LOL, or at least we have ways to compensate for it.

Best of luck and do come pack and keep us posted. People here can give you a lot of support.
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Avatar universal
I wanted to say that your post helped me when I needed it the most. I am starting on week three of treatment and finding the side effects very hard to tolerate especially the depression. I am fighting this alone with no support so it is difficult. I acquired hep c five years ago thru no fault of my own. My husband of 23 years sees hep c as a dirty disease and got where he would not even come near me. Our marriage ended this year due to the hep c. Although it did not affect my liver too bad it wreaked havoc on the rest of my body to the point I felt I had no life anymore. I too developed systemic vasculitis hemolytic anemia and a host of other medical problems. I am working off of steroids after having been on them for a year. There are days I want to quit this treatment but I know it is the only way to get my life back. I truly do believe it will work if I can just get through the side effects. I just wanted to say thank you for your post as reading it is what is keeping me going. May GOd bless you and watch over you and I hope by now you are treatment free and able to enjoy life again!
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Avatar universal
"Th biggest sx for me was mental.  I realized after I stopped how bad I was."

I think the mental symptoms sometimes (in small % of patients) get worse after end of treatment.  Immune system attacks brain as it sometimes attacks joints / skin / thyroid etc. post-therapy.  
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Avatar universal
Hi. I'm Marsh. I'm currently undergoing the 3 drug coctail of Ribavirn, Pegasys Interferon (autoinjector is excellent ) :) and the magic bullet, Telaprevir. Started on August 10th 2012.

Disovered I had Hep C type 1/a 5 yrs ago from a letter from the CDC stating my blood was rejected from the Police Blood Drive due to Hep C.

Further testing and a VERY VERY nasty and primitive biopsy with NO anesthesia revealed stage 1 (5 yrs ago).

Fast forwarding, I developed to stage 2, and this is where "they" decided to put my on the what was then, VX-950 and then later called Telaprevir. so it's Ribavirn/Telaprevir regimin along with one shot of interferon on Fridays.

I'll be getting my preliminary report on Oct. 4th to see if it's working, and then about a month later, they said they can tell if I'm cured, with 90% accuracy with another blood test.

Side affects were initially FUBAR but then got better and better until they were tolerable.

Those included unbearably painful anal stuff as well as nausa. Thankfully, all of that faded. I now have only mild anal pain and no nausea. The only other side effect is itching and redness around the injection site, which I rotate once a week.

I'll keep you apprised of my situation.

PS: The original post, I believed, asked if "it's worth it". It's NOT even a question whether or not getting your liver destroyed with a tremendous risk of liver cancer is "worth it". Of course it's worth it. These meds cure you, and therefore, save your life.
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Avatar universal
If I am undetected 6 months after the treatment like I am now, 3 weeks after my last dose of Incivek then I think it's worth it.  One thing about the internet you have to remember is that the majority of posts will probably be from people having a negative experience.  I hated all the fat I had to eat. It was disgusting, but now that's behind me and I'm not doing too bad.  The Riba and Interferon don't seem that bad except for sleep. I take anxiety pills 2 or 3 times a week to help sleep.  Lack of sleep will get you, so make sure you get your sleep.  
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Avatar universal
Maybe it is worth it.  Maybe not.

I think the equation tends more toward treatment the older you are, even though perhaps less likely to be healed.  

A young person (20s or 30s) should not be risking the permanent side effects, IMO.  They should learn everything they can about not passing it (it's hard to pass, but a young person should know the ways so they can be guarded against - blood to blood, cocaine straws, anal sex,don't share hygiene items like toothbrush, callus files,  etc).  Further, a better treatment may come along in the next 20 years or so.  

How can a drug that messes up the workings of the body so badly that it fries thyroids and causes arthritis and psoriasis and brain injury (temp or permanent) and apparent organically-caused depression (more than the 20-30% that the drugmakers say) NOT but increase the risk and likelihood of other problems that may take some time to emerge, esp. auto-immune problems?

Common sense says it's akin to smoking or chemical exposure at a young age - your odds for later bad outcomes of various types almost have to go up.  

I have watched the black box warnings on Pegasys get more and more explicit since 2008. Just read them the other day - they are a lot plainer and explicit now than they were in June, 2008, that's for sure.  They still don't make clear the notion, however, that if you get one bad permanent effect, you are likely to get a number.  

"Many, but not all" - what a phrase! :-)

Make sure your doctor knows them, too.  

CDC says less than 1 in 20 with Hep C die from it.  Compare the numbers on this post.

Note also that some gripes and complaints and initial cries of pain and disbelief by interferon brain-addled and suffering folks have been censored off of this forum.  

Perhaps many who suffer from serious side effects don't post here because nobody wants to hear it, or they could care less, or they can't for one of a variety of other reasons.    

Good luck!
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Avatar universal
Just finished a 12wk trial of Peg, Rib, and Teleprevir.  I had a big problem with the rash and it has gotten worse after ending the 12 week trial.  Any thoughts on how long it takes for the teleprevir rash to subside after 12wks of treatment?
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Avatar universal
Ive had hep since the 80's. Worked construction the whole time. I was getting very tired by the end of the day, weather or not it was the hep I don't know. I did triple with Inc, and am now und 3 months post tx. I had a rough time with tx. Is it worth it? Hell Yes!! I treated in 2001, and it was worse for me then by far!! If you do go with the triple, make a commitment to doing everything in a timely fashion as far as structuring your day with the meds. This stuff is doing some amazing things. Prepare yourself with knowledge about what you are going to do.
I hope you make the right choice for you and your family. This virus *****, but it can be beat by those of us that couldn't beat it before.
   God Bless!!
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Avatar universal
Hi
I have completed the triple therapy for teleprivir and am now 6 months post treatment.  I had the treatment in Kings hospital, stage 3 of vertex trials.
I had type 1a, stage 2 fibrosis, so hardest to treat.
The treatment was tough, and I personally had a bad time on it, with rashes, itching, anaemia, hair loss, stomach pain, etc, but got through it and completed the treatment.  You need a good support network, I was lucky that I had good friends and family and some counselling to help.  Only four out of 12 completed the treatment, so I am very lucky.
I am still undetectable, and have my final results this month.  I am glad that I done the treatment, and I would say go for it.  It won't be easy, but it is worth it if you get rid of the virus.  My hair has grown back, my energy levels are coming back gradually, still get pain in hands, but hoping that will go in time.
I am so glad that I stuck at the treatment, it was worth the risk.  
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1856494 tn?1340542614
I am getting a dog!
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317787 tn?1473358451
EYE ON THE PRIZE that is the best thing to say.  
Thank you
D
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317787 tn?1473358451
I just finished tx 3 weeks ago and I am feeling better already, what a shock, I even see some baby hairs.  No I am not 100% but much better than the last time when I relapsed.
Thank God I stuck with this
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179856 tn?1333547362
Ha I'm with star-shine (darn auto correct) that's the attitude!  
Ps Star, I want one too!!!!!  ;)
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910090 tn?1332167460
I find this treatment not much different that the Pegasys I did previously.  It is well worth it to me as I was undetectable at week 4 and being class 1A, stage 4 with cirrhosis, I am ecstatic, to say the least!  I am finishing week 19 and have 29 more weeks to go.   Would not dream of stopping this amazing tx.  I feel very blessed to have this chance to beat this once  and for all.

I love that statement, "Eye on the Prize" and that is exactly what I am visualizing...AND a new YOUNGER boyfriend...hehehe  Congrats, FoieGras...:-))

Best of luck, Starshine
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Avatar universal
Incevik was the worst, would I do it again yes. My thyroid is gone, hair is gone, cranky, hemorroids I never had before. Und 4,8,12,16 see your doc for side effects I waited too long because I didn't want to seem like a big baby get help for the sides. Anemia is my issue I have been in the low 8s almost all of the twenty four weeks. I have had two blood transfusions which make me feel like wonder woman when it kicks in. One more shot to go and a week later the riba will be done.

It was worth it. All cancers are terrible to have, if this keeps me from getting liver cancer, I'm doing it... of course to treat is a personal decision.
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