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1116669 tn?1269146866

cirrhotics on triple therapy speak out

As I am imminintly starting telaprevir, interferon and riba with a history (18 years ago and 9 years ago respectively) of failing mono and dual therapy I'm hoping to start a specific thread. Obviously there's an urgency to defeat the virus once you become cirrhotic as I have. I'd be grateful to anyone who fits this minority of patients if they would id any triple therapy tips. It's difficult not to catastrophize when reading about massive rashes and wigs and staying in bed, etc....I for one have no option but to work as the insurance that will pay for the therapy comes from my job not to mention child support and the roof above my- well you get it. So any of you "I ain't got too many more chances" gals or guys on triple therapy: any good news, side effect mitigation strategies, specific antidepressant prophylaxis, etc? please share your experience, strength, and hope! My best. dennis
81 Responses
446474 tn?1446351282
Dennis, first let me say that I believe it is cirrhotics that need to try that new meds ASAP as they are in a time game and have the greatest chance of all patients to have time to try treatment run out for them. I am decompensated but I was still going to try the new DAAs as one last shot at trying to clear the virus. Unfortunately I developed liver cancer before I could start treatment. So the treatment is not a priority now. The only cure for HCC is transplant so that is what I have to concentrate on now.

A few comments on the new DAA treatments and cirrhosis:

Patients with cirrhosis usually will be the ones with many of the more serious complications of treatment. Why? Our systems are already comprised by having advanced liver disease. Enlarged spleen so low platelet counts. Weaken immune system. Portal hypertension, etc. So we are prone to develop anemia, low platelet counts, intense fatigue, etc.

Cirrhotic patients of course should be monitored closely by a hepatologist. Remember a very small percent of cirrhotics maybe 5-10% experience liver failure when treating HCV. So being connected with a hepatologist at a transplant center is always I good thing to do. Just in case. "Hope for the best. Prepare for the worse".

(All info based on services provided in California. Your mileage may vary).
Of course you want to continue to work but you should be prepared before starting treatment about what your options are if you can't work at some point. First, you won't lose your health insurance. Assuming you work at a company with more then 50 employees. If you can't work the company will continue to pay for your insurance as long as you are expected to come back. I know you don't want to do this but here are some options.
1. You can take up to 90 days per year to take care of yourself or others under the Family Medical Leave Act, FMLA. The time off is unpaid. "take up to 12 workweeks of unpaid, job-protected leave in a 12-month period for specified family and medical reasons" "a serious health condition that makes the employee unable to perform the essential functions of his or her job"
2. If the condition is more long term you can go on State Disability Insurance (SDI) and you will be paid a percentage of your salary. "You must be unable to do your regular or customary work for at least eight consecutive days". "You must be under the care and treatment of a licensed doctor or accredited religious practitioner during the first eight days of your disability. (The beginning date of a claim can be adjusted to meet this requirement.) You must remain under care and treatment to continue receiving benefits". "May I require my employees to take all of their Paid Family Leave insurance benefits at one time?
No. The law does not establish a minimum number of hours or days or weeks that an employee must take Paid Family Leave insurance benefits. It only established the maximum leave time of six (6) paid weeks within a 12-month period.
Are employees required by law to use their vacation leave when collecting Disability or Paid Family Leave insurance benefits?
No, not for Disability Insurance, the law gives an employer the discretion (option) to require an employee to take up to two weeks of earned but unused vacation leave, when the employee is requesting Paid Family Leave". The company still can't replace you for I believe it is 90 days or something. Research it for exact details.
3.Worse case scenario...your liver fails. You need and get a transplant and it take you 6 month to recover to go back to work. Then you can get Social Security Disability and if you can't return to work and are replaced you still have your health insurance under COBRA.
Actually what may be most relevant and important to cirrhotics. NEVER, EVER let your health insurance lapse even for one day!!! You will never be able to afford health insurance again until maybe 2014 when the government will have affordable insurance for people with pre-existing conditions. Of course if you are a millionaire you can afford thousand of dollars a month for health insurance.

As far as specific antidepressants. What antidepressants work for one person doesn't mean it will work for another. It is individual, like liver disease.

Good luck!
Hector
Avatar universal
I think it's a good idea to start a thread for cirrhotics only. You can add me to that list and I will tell you my experience. I'll be going on my fifth shot thurs. I'm waiting for my blood report to see if I'm undectectable and. blood counts etc. I'm do not have the horrible stomach and rash yet anyway. Still have all my hair, been using nioxon triple therapy. Don't know if it's helping I'll let you know soon though.. Interferon has been the easiest., but I have to tell you as the week go on it is the mental and physical fatigue becoming worse. I want to get back to work a few days just to get myself at of this house, but I hate being away from my safety zone. What's happening to me is I don't trust my body or mind anymore. I am hoping when I stop the incivek it gets better. I'm just now starting to have the feeling of wanting to jump out of my body. Strange how you can be so fatigued and still have the jitters. I'm not taking antidepressants. I can't stand the side effects from them, plus they have never helped me.  

I take Valium and where it used to help when I wasn't treating. It feels useless now. Just makes me more tired which I don't need. I put some money aside for this but didn't realize at the time this could be up to a year. Not sure how I'm going to do it either financially ,mentally or physically, but there is not alternative for us with cirrhosis..

You're right we need to start a separate thread because I think our needs are different. When I though 6 month I was gleaming. No problem, I can do 6 months, but as the days and months start to wear you down and I found out it was 48 weeks for us everything starts to change. Start the thread, I'll be there to help you along. It took me a few days, but I realized this is probably my last chance to cure the virus and the way I was feeling before I started treatment was just awful, I'm hoping that I'll feel better after Incevek. Only a little over 7 weejs if that left. Keep in touch and I wish you all the best. I know it's not a good place to be in but just keep thinking of how it will feel to be free of this virus and have all the energy back again..
Avatar universal
PS Like that name: Cirrhotics on triple therapy speak out. It may a good title to use so we can find each other
1253246 tn?1332076910
Is this 90 days for fmla different from state to state???My job will only allow 60 days  for fmla.Where are you getting this info from ?I would really like to know  cindy
Avatar universal
It's 12 weeks...so that would be about 60 working days or 90 calendar days.  An employer has to have a minimum of 50 employees before FMLA applies to the employer.

http://www.dol.gov/whd/fmla/index.htm
446474 tn?1446351282
The U.S. Department of Labor has the facts.
http://www.dol.gov/compliance/laws/comp-fmla.htm

It is a Federal Law so I am not sure how it could vary from state to state. But I'm no expert. I used it and I am saying what my experience was here in California. Just wanted to raise the issue. Too many people are unaware of the rights we have.

The nice thing about FMLA is the time doesn't have to be consecutive. So you can you it when you feel too ill, have a doctor's appointment, have a lab test, etc.

Best-
Hector
1654058 tn?1407162666
Add me to your list. I was unable to teach full time last year and am currently going back. Unfortunately, that cuts me out of the FMLA since my last job was part time and you have to have at last a year on the job.
I really like the idea of keeping up w/ each other. Good call, since as Hector and streamline said, we have specific needs and potential for different se. You WILL hear good news tho, in spite of our degree of severity of liver damage. Off to work. I'll be watching ur posts! Karen :)
897070 tn?1320656229
Add me to the list too, not treating yet but moving in that direction.

Good luck to all !
Avatar universal
The special thread is a very good idea.  I too am cirrhotic.  From Oct. 09 to Sept. 10 I was doing the combo.  At the end, the virus was undetectable; three months later, the follow-up revealed that it had re-emerged.  I was supposed to begin the triple whammy a week ago today.  The interferon, ribavirin, and victrelis are still in the fridge on hold.  My wife and I decided to postpone because her nursing position at one of the UH hospitals in northeast Ohio may fall under the axe if staffing cutbacks dig any deeper.  We don't want me to start and then have to stop because of insurance issues.  We have our eyes on the patient census at her facility.  Hopefully, in a few more weeks she'll feel confident again about her job.  I'll keep in touch with your thread.
223152 tn?1346981971
I guess you may as well add my name to the list.  Doctor says I am so I guess I am -- but still can't wrap my head around it.  Stage 3-4 , about 50/50.  Will start therapy in a week or so -- in for the 48.
frijole
1749655 tn?1321804534
Add me to list too.  I was diagnosed in 1994 and this is my third attempt at treatment.

I am at the end of Week 3 and am working full time and plan to resume a part-time teaching position as well in September.  I have no intention of slowing down no matter what.  I find that works helps me mentally and physically.  Since I work Mon-Fri I take the peg on Friday.  I am prepared and in fact already have sacrificed my social life.  This I do gladly in order to persevere.

So far my side effects have lessened each week (although my hemoglobin level has dropped somewhat).  Only one has remained constant and it is a pain in the *** if you get my drift.  I strongly suggest that you take advil when you take your peg.  Drink more water than you can imagine.  Adhere to a strict regime for taking your meds and eating the necessary fat grams.  Listen to your body.  If is tells you it's tired, rest.  

I am not presently taking any antidepressants but did in my prior attempts to treat.  Be aware of what's going on within your mind and body and reach out to your doc if you feel you need additional drugs whether it be for sleep, anxiety, depression, rash, unusual anal sensations, etc.  I am sure we will need all of our strength and the support of family and good friends to get through this.  48 weeks is a very, very long haul.  But since this could be our last chance, I am determined to make it at all costs.  For me not working is simply not an option cause me is all I got.

Best wishes as you start your journey to good health!
Avatar universal
another country heard from   im borderline decomp and im not really sure i want to do another year or so of treatment    theres a quadruple therapy in phase 2 trials i think
id rather wait for that as 24 weeks is the max   question is do i have the time
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