POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: SFtraveler on September 09, 2008, 12:15:43 am
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I am co-infected with HIV and HCV. I have Stage 4 liver disease with partial decompensation so my liver is like a bald tire - it works, but could blow out at any time.
Both my HIV specialist and my hepatologist want to start me on Pegasys but I have only 115 to 125 T-cells. My HIV doctor has tried everything to boost my CD4 count, including Isentress and Fuzeon, but after rising to about 180, my T-cells have fallen again.
Studies indicate that Pegasys will fail me. But I have no choice but to start Pegasys because if I do nothing, my liver will eventually fail. So I'm caught between a rock and hard place.
Is there anyone out there that has started on Pegasys and succeeded?
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Hi SFT,
I got rid of my hep C by using PegIntron, which is pretty much the same thing as Pegasys, but formulated slightly differently and made by a different pharmaceutical company. I had one shot per week and twice daily Ribavirin.
My CD4 counts were 530 (26%) at start of treatment and 410 at the end. I don't have the percent for the end. (I did 52 weeks on treatment) Three months prior to treatment's end my counts were 363 (23%). Nine months post treatment they were 518 (28%). I'm hiv treatment naive.
At the time of treatment, I had hcv for 18 years, hiv for five.
Treatment success/failure has a lot to do with the hcv genotype you have. Do you know yours? I had 3a, luckily one of the easier to treat.
My hcv viral load tests have come back undetectable from week ten on - I did the treatment in 2002/03 (April to April), so that means I've been undetectable for just over six years. They consider that a cure.
Even when a person does not have a sustained response, there is a lot of evidence that the time on treatment will help the liver repair itself. However, the side-effects can be quite debilitating so a lot of people will not carry on with treatment if the hcv viral load does not go undetectable by the three month point.
An excellent website for hiv/hepatitis coinfection is http://www.hivandhepatitis.com/
Good luck SFT. If you have any further questions you'd like to ask about my experience, fire away.
Ann
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Thanks, Ann!
I've been HIV positive since at least 1985, but was asymptomatic until late 2005 when I suddenly got very sick and doctors discovered I had hep C. They estimate I've had it since 1975-1980 which makes sense to me, given what I was doing at the time. I have genotype 1a, which is very hard to treat.
When I got sick, my T-cells plummeted but my HIV doctor started me on antivirals which brought my viral load to undetectable. But the hep C continues to attack my system and is gradually driving down my T-cell count, despite my HIV doc's best efforts. That's why he's so anxious for me to start on Pegasys or Pegatron or something to stop the hep C.
My hepatologist is very, very good and nervous about starting me on treatment with less than 200 T-cells, but at this point, we don't have any choice but to assume the risks.
In the meantime, I feel great. I work full-time and work out at my gym five days a week to keep myself in tiptop shape. At the same time, I am acutely aware that my liver could fail at anytime and if there's no compatible donor available, then it's end-game.
I'm hoping to hear from others in my situation. I know about HIV & Hepatitis, so I'll post a query there as well.
Thanks for taking the time to respond to my post.
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Hi SFT,
That sucks about the genotype. I was hoping you didn't have that one.
I think if it were me, I'd give the treatment a try. You don't have to stay on it if it badly affects your numbers - or if the side-effects prove to be too debilitating. You sound like you're fit and healthy otherwise, so you might be able to handle it. Thing is, you won't know until you try and as I said, you can always stop.
A good part of why I'm encouraging you towards treatment is because although I went through hell for a year, it was well worth it in the end. I think if I hadn't done it, I'd be on the hiv meds by now and I no longer have the worry about how they'll affect my liver when I do have to start the meds.
I wish you luck and CD4s. Give me a shout anytime if you want to talk more. You can PM me if you would like to.
Hang in there!
Ann
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hello from another genotype 1'er
cd4 count, provided you are on appropriate prophylactic meds as needed & being monitored regularly, i think this isn't as much of a problem as you fear
the bigger issue, certainly in the uk, wold be the level of liver damage you have - both in terms of hcv drug side effects and likelihood of treatment being safe adn effective
that said, i think some small studies in the past couple of years have shown that there can be some real benefits to people in this situation - on the webstie that ann mentioned, hivandhepatitis, you might want to have a look at study 2 (http://www.hivandhepatitis.com/hep_c/news/2006/120806_b.html) in this article and also this, from ddw 2008 conference (http://www.hivandhepatitis.com/2008icr/ddw/docs/061008_a.html) and this (http://www.hivandhepatitis.com/hep_c/news/2008/031108_a.html), amongst others.
you are on the transplant waiting list, or is that still being discussed?
good luck to you -i do understand how tough the treatment, & the business of various body parts failing can be. i had 2 go's at treatment(both times with less than 250 tcells), unfortunately no clearance - but i do believe it at least slowed down damage/improved function
kate
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Thanks, Kate!
I am aware of both studies. My hepatologist plans to start me on Neupogen and Procrit when I start Pegasys to keep my white and red blood cell counts up. I am Stage 4 with partial decompensation so my liver is right on the edge.
My hepatologist, who is British and excellent, plans to monitor me "like a hawk." I tolerate meds very well, no matter what they are, so I'm not worried about that. He is worried, however, saying I am walking a tightrope and he is leery of doing anything to toss me off balance.
I am on the transplant list and have been for more than two years, but those doctors say I am too healthy for a transplant and they prefer to give available livers to those who need them immediately. Besides, all the doctors agree, it's better to eliminate the hep C virus from my system before doing an transplant or the new liver will simply become infected as well.
I'm not nervous or afraid. In fact, I want to start Pegasys immediately. It's my doctors and partner who are nervous about losing me. I see my hepatologist on Sept. 29, at which point we will make the decision to start Pegasys or not. I have faith that I will survive.
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I was on the Pegasys treatment and my counts plummented so I got the added oomph of Neupogen.
Kept me stable and I was able to complete my treatment. Now in my case I have a squirrley inability to create antibodies at the rate that a normal person can so I am very suspectilble to infection. I call it dancin' the auto-immune tango but my Hep C is undetectable now
If you experience the nausea and inability to eat with the Neupogen, I carried Frosted Mini Shredded Wheat and munched on that when the gloopy symptoms happened.
Hugs and Smooches to you!
Jude
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Here we go! I am about to start on Pegasys even though I have only about 125 T-cells. All the doctors have rushed to get in their baseline tests so they can see what happens to me. I have only one last test to undergo - an endoscopy to check for any varices.
Then I start on one night with weekly injections of Procrit and Neupogen, followed the next night by a weekly injection of alpha-interferon and ribavirin tablets. I'll start out on a half-dose of interferon which will be gradually increased depending upon my body's reaction to it. Then I stay on the Pegasys treatment for 72 weeks.
And, of course, I'll continue to take Fuzeon injections twice a day.
My HIV specialist jokes that if I survive, he'll put me on the cover of the New England Journal of Medicine. As I've said before, I'm not afraid, but my partner and hepatologist are extremely nervous about this treatment plan. But with Stage 4 liver disease, there's no other option but to try this experiment. If nothing else, all the doctors and researchers will get some valuable data!
;D
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Hey SF
I recently read a protocol for a new study, multi-site for Taribavirin (not yet FDA-approved) but it's been developed to decrease the likelihood of resulting anemia because it moves directly to the liver unlike Ribavirin. I mention it despite your start date noted in case your doc has an opportunity and/or interest in putting you on it instead.
I'll see if I can rustle up the pharmaceutical firm's name. Edited to add: Here's the link to the site. http://www.valeant.com/researchAndDevelopment/pipeline/taribavirin.jspf
Look at the second section on the first page titled Ongoing Clinical Trials. This is a phase 2b trial. It might just be advantageous to you for a variety of reasons, physiologically and financially, to be involved in such a study.
Em
Edited to add: I believe it is genotype 1 for the inclusion criteria.
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Good luck, SF! Please keep us updated.
One thing I'd like to say... whenever I was fed up with the side-effects, I'd remind myself that the treatment wasn't going to last forever. Remembering that, and taking one day at a time, helped me get through it.
I hope it goes well for you.
Hugs,
Ann
xxx
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Here's an update: I started on Pegasys on Thursday, Dec. 4. Initially, there was only one side-effect - fatigue on the following Saturday and Sunday which I dealt with by taking a 90-minute nap. But I was taking only a half-dose of the alpha-interferon, as the doctor directed.
Two weeks later, I increased the dose to 75 percent of normal. I noticed that I had more diarrhea which I could no longer control with increased doses of acidophilus. I also broke out in skin rashes that looked much like mosquito bites. I was able to eliminate the rashes by drinking more water - 72 ounces daily - to keep my skin hydrated and using Eucerin Calming Creme to deal with any outbreaks. What has gotten worse is fatigue. I work for about three hours and feel the fatigue setting in, so I leave work at 4 p.m. instead of 5 p.m. and go home and take a nap. I no longer have the energy to go to the gym.
Meanwhile, my lab tests are looking ominous. My neutrophils have fallen below the normal reference so I run the risk of contracting an infection from just about anything.
I meet with my hepatologist today to decide whether the risk of developing neutropenia is too great and I should stop taking Pegasys or whether we risk continuing on and increasing to a full dose. He's very cautious, but I'm in favor in pressing on. What do I have to lose?
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Met with my hepatologist and he's agreed to press ahead albeit slowly. He wants me to stay at a 75 percent dose of interferon until he gets the results of next week's lab draw. That will be a fasting blood draw in which 12 vials of blood are drawn. That will give him a better picture than a regular CBC blood draw.
If results look ominous, he'll keep me at 75 percent, perhaps indefinitely. If results are promising, we will increase to a 100 percent dose.
He prescribed Fiber-Con for diarrhea, continued high water intake for skin rashes and plenty of rest for fatigue, perhaps even cutting back on my work hours. I'm resistant to the last recommendation, but my husband agrees and he's more strong-willed than me!
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Good luck.....i'll be thinking of you man....stay strong....
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SF,
I want to chime in here with your doctor and husband - cut back on your work hours as much as you can! Give your body every chance you can to fight this. There's a huge battle going on in your body right now and the best thing for it is rest. Can you take a leave of absence? Or work some hours from home?
OK, I'm going to be a bit blunt now, be warned. Is it better to keep working full-tilt now, or is it better to take time off and in the end, add years to your working life - and life in general? Please, please, please, give this your best shot. If you must work, work with the treatment, not against it. ;)
When I was on treatment, I also had to drink water - gallons of the stuff. My mouth was constantly dry and I've ended up with permanent gum damage as a result. I had bottled water EVERYwhere in the house and I never left home without at least a couple bottles. I had terribly dry skin too and nothing really helped. The only saving grace was it didn't itch. When I'd take my clothes off, I'd be reminded of those little snow-globes you can buy as paperweight/ornaments. I know, ewww... It never seemed to matter how much exfoliating or moisturising I did... body-dandruff every time. ~sigh~
Hang in there honey, I know it's tough. You can do it! Remember, you won't be on this stuff forever, there IS a light at the end of the tunnel. Knowing that got me through it. The longer you manage to stay on the treatment, the more benefit to your liver and the better chance of a sustained response.
Good luck and please do keep us posted.
Hugs,
Ann
xxx
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Thanks, Tag man and Ann!
It's a struggle, but I just endure it. I get tired of being fatigued all the time, but I have the will power to just press ahead.
I've been sicker and more fatigued so I can get through this, too!
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Keep the will-power...
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hi ya!
here is my story with pegasys and 159 T-cells. i got off heroin and crack 3.5 years ago at that time i was 11 years positive - hiv and hep.c. around a year of being clean and sober i started the treatment same as u r on for hep.c i don't know exactly the state of my liver i had at that time but i was after 15 years of heavy drug and alcohol abuse and i was a walking corpse. the truth is i had really really bad experience
with the treatment i mean the side-effects and after a month of being on it i was sure doc. put me on it too early but it had to be done. the side-effects were: severe depression, skin problems itching headaches loss of appetite i had jaundice, horrible horrible hot flashes with prickling under my skin all over my body head ,arms legs ,face ,back ,chest ,severe fatigue, my T-cells dropped from 159 to 38 within 6 months which wasn't that bad , regarding work man i had days i couldn't get out of my bed. I'm not trying to discourage you I'm just being honest. 4 months down the line i started having suicidal thoughts and i was so desperate that i started to pray and meditate. now what I'm going to say you can mock me or laugh at me i don't care but that is the truth what happened. i was meditating and praying for about a month at that time. one night i was praying sitting on my sofa praying to Jesus Christ yes i know how it may sound, it wasn't in my plans at all but the state i was in and desperation - really in a bad state next moment i was filled with joy and peace that I've never experienced in my whole life i cannot find words to describe it there is no words to express it one of those things that u need to experience. i was in that state for about 20-30 min . through the next 3 weeks i felt great the side-effects didn't go away but i felt above them . after 3 weeks of this sweetness i was getting depressed again all came back and i stopped the treatment went to my doc. told him that i cant cope with it and I'm not going to continue the other six moths of that hell . the blood test was negative regarding hep.c and still is now . I'm almost well around hiv i had only problem with raltegravir which i had to switch to intelence which is great I'm on
truvada and intelence no complaints at all . SFtraveler I'm praying for ya if i was you i would give myself a break with work and stuff your body will need lots of rest. wish you well on that bumpy ride u can do it man. love loves ya. peace
Lucas777
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Thank you, Lucas!
No need to be embarrassed about your prayer experience. Two years ago, I was in the hospital for the third time in three months because ammonia buildup had crossed into my brain and my system was being flushed. I was so weak and so tired of being sick, I was on the verge of giving up. As I lay in bed alone at 2 a.m., I asked God to just take me home. Then I remembered what Jesus said in the Garden of Gethsemane when he knew he was about to be crucified.
"Father, if it is possible, let this cup pass from Me...yet not as I will, but as You will."
So, I said to God, "Do whatever you wish with me." Suddenly, the pain and weakness faded from my body and I felt as if I was floating comfortably on warm water. I realized He had heard me and I cried myself to sleep.
The next day, I felt so much better and I was discharged within three days. I've never had to go back to the hospital. I concluded that God had His own plan for me and I just had to yield to it.
My health and strength returned so much so that my doctors are still puzzled by it. Now that I am on Pegasys and it's wearing down my system, I have to remind myself to just surrender my future to God and let Him take it from there. That's how I avoid getting terribly depressed with being weak and fatigued.
I'm Catholic and an active member of Most Holy Redeemer Parish in San Francisco. Everytime I serve as a lector or an acolyte during the Mass, I am so grateful to God for keeping me alive so I can be of service to others.
Yes, Lucas, I will ease up on work and get plenty of rest. I am determined to complete the Pegasys treatment, then get a liver transplant so I can do the work that God has in mind for me.
God bless,
philip
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i had only problem with raltegravir which i had to switch to intelence which is great
Sorry, "lucas777", what kind of problems had you with raltegravir? I'm asking because usually raltegravir/"Isentress" is one of the best tolerated ARV drugs.
Thank you!
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hi Philip,
big thanks for sharing it , i could be still shy regarding my faith because i remember the way i was reacting to these sort of experiences before i experienced it myself. as you said with those dark places surrender is the way to the inner peace, i still struggle with it , to be honest, i didn't accept it yet 'fully' that I'm ill , all these years i was on the path to self-destruction using and drinking on it and now I've got to learn how to live with it-God had different plans for me, when i found about hiv that i have it- back then i was gone to oblivion didn't want to live with it when i got clean and sober someone recommended me to go on Alfa Course- Christian course about faith and i experienced God there for the first time it change the way i was thinking about the world, my illness and everything else within a second. now i'm full of gratitude in almost all areas of my life but still fighting around acceptance especially when it gets difficult , never dealt with the real feelings around that.also after the experience my obsession around drugs and alcohol has been removed 'literally' which for me it's a miracle. ' anyways ' keep it up.
every blessing,
lucas
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hi Leit,
i was for about 2-3 weeks on it and it smashed me to bits, it brought up depression, had these red patches (itchy) on my forehead, behind my ear and under my belly (steroid cream was helpful) , lethargy and also these bloody prickling/stinging under my skin when my body' temperature was rising sort of hot flashes for instance: when i showered or run or drink hot tea or eat hot soup- not to take it for so common called pins and needles crawling with numbness that's what my doc. did and sent me to do mri brain scan (i'm waiting for results) i think that it's pharmacological not neurological but that's my opinion i'll know soon. i had it during pegasys treatment it disappeared after stopping the treatment (5-6 months) tried to google it could not find much information about it . one person said that's depletion potassium or metabolic disorder or b-12 deficiency other person said that it has to do something with skin problem i would appreciate any information regarding it. one thing more i woke up , after stopping raltegravir around within 2 weeks 2 times at nights and my skin in few places on my back was burning , horrible and
painful now i'm about 6-7 weeks on intelence and truvada and everything seems to getting back to norm
if you have any ideas what could cause this problem please let me know.
every blessing
Lukas
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Thanks for answering, Lukas!
Unfortunately, I've no idea of what could have caused the problems you described.
In regard to a possible reltegravir/"Isentress"-depression link, I only know these case reports published in the last September 12th edition of "AIDS": "Raltegravir may cause temporary worsening of pre-existing depression (http://www.aidsmap.org/en/news/FDC57274-63B8-4BAF-ABC2-09CC5C9ABA19.asp)".
Best wishes!
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Hi, Lukas!
I am also at a loss to explain your itching and pinprick sensations. I would try warm showers or baths, not hot ones, and using Aveeno oatmeal baths.
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I latest lab results are in and they aren't good. My absolute neutrophils have dropped to .80, just above the danger zone of .75, just as my hepatologist feared.
He's going to wait for the results of next week's blood draw to see if the neutrophils have dropped below .75. If so, he may increase my dosage of Neupogen, but the drawback to that is my platelet count may continued to drop below its current level of 54.
The only other alternative is to discontinue Pegasys entirely. I'm opposed to that. I want to push it as far as I can. I'd rather go down fighting than simply surrender.
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hi Philip,
Really sorry to hear about the results and I hope that you won't be constrained to stop the treatment also regarding these sort of 'difficult' to be at situations I believe that a person knows in his heart of hearts what to do . Personally I find it hard to say something meaningful to where you at but I know that you are comforted from within. :D
Regarding the prickling it improves I'm taking multivitamins, vitamin b strong compound, drinking plenty of water, eating lots of bananas (potassium). I'm glad that it improves already because last time after stopping pegasys it took me good few months to get rid of it. also I'm still waiting for mri brain scan results but something tells me that is clean if not I would have had a phone call from the hospital.
You are in my prayers.
every blessing.
Lucas.
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Thanks for your continued support, Lucas.
I won't quit Pegasys unless my hepatologist orders it.
If you find eating bananas helps, I recommend dried apricots. They contain more potassium than bananas. I'm pulling for you.
philip
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Just a quick note to let you know you are in my thoughts and I appreciate your strength and perseverance and for keeping us all posted on how its going.
Big hugs.
Rex
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hello SF traveler,
thanks for posting your story. i just found out i have hcv like 2 days ago. how did you find out which type of hcv you had and your stage of liver damage? are there any other questions i should ask the hepatologist?
dude, keep us posted. i hope this works out well for you. i will keep you in my thoughts.
best,
d
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Next,
Once the hcv VL test is run, they will run a genotype test. (no point running one of those until it's established that you do indeed have a viral load)
The stage of liver damage is determined sometimes by ultrasound, but more often by liver biopsy. I had one done years ago and it wasn't pleasant, but it was bearable. I can't see them giving you a biopsy at this early stage in the game.
You might want to ask your hep doc about your ALT and AST levels. These are liver enzymes that they pay close attention to when you've got hep.
And another thing - make certain your hepatologist has experience with hiv/hcv coinfected patients. This is VERY important. I was treated by an infectious disease doc who has had years and years of experience and is highly respected in the coinfection field.
Ann
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Early success! Pegasys shows signs of working - my HCV viral load has fallen in two months from nearly 1 million copies to just over 58,000 copies. My hepatologist increased my dose of alpha-interferon to 180 cc weekly or a full dose. To counter the drop in my hemoglobin, he increased the weekly injection of Procrit to 60,000 units.
Meanwhile, my HIV doctor is pleased that my HIV viral load is still undetectable, my T-cells remain stable at 115-120 and my CD4 percentage has increased to 26. So he has discontinued Fuzeon because apparently it's not needed to maintain my T-cells. If the next monthly lab results show a significant drop, then I'll restart Fuzeon. But for now, no more twice-daily injections!
Both doctors are amazed that I am doing so well, but I know it's because of my faith and the support of so many people.
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SF,
That's fantastic news to hear. Hope you continue to improve and feel better too. Sounds worth the bad days and all the risks. Keep it up. -YaKa
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that is great news! congrats and keep us posted.
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hello my dear .
Sftraveler ,i raed all your tread and i belive with faith we can move moutain,and belive me because bible said
our body is not a temple of sickness it's a temple of God,and in (NAHUM 1 vs 9 said, what do you conspire against the Lord ?He
will make an utter end of it.Affliction will not rise up a second time amen)so my dear begin to claim that you're healed in Jesus name ok and i pray that no weapon formed against you shall prosper,i'll put you in prayer ok
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Thanks for the update. Will be having a more serious discussion with my own dox about the Hep C thing during my next visits soon.
Wishing you all the best.
Rex
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Great news SF! Thanks for letting us know how you're getting on. Keep on truckin!
Ann
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Hi Philip,
Really good to hear from you, that is a massive improvment compering it to what it was before. keep it up ;) good to know you getting better.
every blessing
Lukas
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Bad news! After five months on Pegasys, my hep C viral load has risen to 22,240 instead of continuing and becoming undetectable. Accordingly, my hepatologist has directed me to stop taking Pegasys because this medication has failed me as he feared it would.
I'm very, very disappointed because I was counting on Pegasys to eliminate the hep C virus from my bloodstream. Now we need to decide if there is another medication that might work or whether I wait a year or two for a new med to get FDA approval. Everything in clinical trials is at phase II or phase III.
In the meantime, we need to keep my diseased liver from failing. The odds of qualifying for a transplant are small because any new liver would simply become infected with hep C. We've been at this stage in early 2007 when we made a concerted effort to get me as healthy as possible so I could start on Pegasys.
Now that effort has been for naught and I feel like the last two years have been wasted.
On another front, my T-cells have fallen to 74 as a side-effect of Pegasys, but my HIV viral load remains undetectable. The lab results make my HIV doctor nervous, but they have not fallen into the danger zone.
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Damn! I'm very disappointed about your news too, Philip. That really sucks.
Is it possible that you might qualify to participate in one of the phase III trials? I seem to remember hearing some good news recently about one of them (and I'm sorry, but I can't remember which!). A visit to the hivandhepatitis.com website (linked to above) will give you plenty of reliable information about what's happening on the trials front. Good luck!
You should see your CD4s start to rebound now that you're off the Peg. My CD4s went south during treatment and most people's do, but they normally come back up after. It will take a while, but hang in there. With you being on hiv treatment, the important thing is that your VL remains undetectable.
Please try to hang in there. I totally empathise with your disappointment and times like these I wish I had a magic wand. All I can do is offer you a cyber hug...
((((((Philip))))))
More hugs - bundled with some healing energy,
Ann
xxx
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Yeah...I am with Ann....I'm sorry to hear your news....I had hoped things were gonna stay better for you. Just know we are here to listen to whatever you may be feeling. It gets hard running all that information in your head without letting in out at times. We are here for you.
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Thank you both!
I checked the latest on clinical trials last week so I my options.
I've moved beyond depression to a state of acceptance. I'll accept whatever God decides for me.
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A big hug to you man....Good Luck....
I expect updates....