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Author Topic: terrified of ribo not sure i can cope please help!!  (Read 4893 times)

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Offline applepie

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terrified of ribo not sure i can cope please help!!
« on: April 21, 2017, 12:30:52 am »
i am terrified to begin technivie and ribo in a few days and considering backing out. my mental health is extremely fragile and i am only now starting to recover from loss of a dear child to violence. i do not feel i could cope well with sides and work as a freelance writer-- i must have a functioning brain! i am by no means financially or socially secure it is only my husband my young son and I and i am estranged from a violent, abusive family of origin, with little social support. i feel this drug could destroy my health completely. i am stage 2, do have fatigue but i can live with it. i cant live with mental instability and feel i would kill myself if driven too far due to ptsd from a life of abuse.

Offline Lynn K

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Re: terrified of ribo not sure i can cope please help!!
« Reply #1 on: April 21, 2017, 12:46:57 am »
Have you discussed this with your doctor? Is your treating physician aware of your fragil mental health?

"Excerpted from the prescribing information sheet:

Before You Take Ribasphere Tablets, Tell Your Healthcare Provider if You Are,
Have, or Have Had:

• mental health problems, including depression or thoughts of suicide;"

Also:

"Before taking ribavirin,

tell your doctor and pharmacist what other prescription and nonprescription medications, vitamins, nutritional supplements, and herbal products you are taking or plan to take. Be sure to mention any of the following: azathioprine (Azasan, Imuran); medications for anxiety, depression, or other mental illness

if you have ever thought about killing yourself or planned or tried to do so,

Also tell your doctor if you have or have ever had a mental illness such as depression, anxiety, or psychosis (loss of contact with reality)"


Just to add not all patients experience these side effects but you should definitely have a conversation with your doctor.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline applepie

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  • Posts: 6
Re: terrified of ribo not sure i can cope please help!!
« Reply #2 on: April 21, 2017, 01:26:11 am »
yes. my doctor knows. he is selling this hard  and says its likely i wont have any sides. he is not even aware that technivie can cause hep b reactivation as i learned o. my own.  for me, a cure has 0 social or psychological value as it apparently  has for my doctor. i only care about my quality of life  and not losing the economic progress we have finally made. to not be sble to work right now would be devestating for me and my child. my doctor minimizes every possible negative outcome and paints a rosy picture of life once i am cured.

Offline Lynn K

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Re: terrified of ribo not sure i can cope please help!!
« Reply #3 on: April 21, 2017, 02:34:21 am »
Well on that issue it is true that the sides are not an every day occurance that most people will not have those problems. Also your liver disease is progressing but you are only F2. So you could try treatment and if you begin to have issues just tell your doctor you are having problems and want to quit.

Do you have a counselor you could speak with and receive support from before and during treatment?

Really the sides you are worried about are not that common and seldom debilitating. Many people continue to work fill time while in treatment. Of course everyone is not you.

Really only you can decide what you want to do from here.

Best of luck to you
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline elias

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Re: terrified of ribo not sure i can cope please help!!
« Reply #4 on: April 21, 2017, 02:43:57 am »
Hi Applepie:

Not sure why only Technivie can be approved for GT4 ( Am i correct that your GT 4?)
by the patient assistance program

Medically, there's no need for you to take Ribavirin, if you were to use Epclusa instead.

Initially, my insurance wanted me on Sovaldi+Ribavirin for GT 2. I was very apprehensive for the very reasons you are. and its a legitimate concern.  I suffer from PTSD most of my life.

 The insurance company at first claimed that since Epclusa was not in their Formulary I would need to take that older combination (Sovaldi+Ribavirin) But I appealed. My doctor asked for "exception to the formulary" But he put it into very medical terms, rather than psychological. It worked, and I got approved for the Epclusa. Hopefully, a strong letter from your physician  might prevail with the Patient Assistance Program same way.

Heres link to phase III study on Epclusa including GTs 1,2,4,5,6:

http://www.nejm.org/doi/full/10.1056/NEJMoa1512610?af=R&rss=currentIssue

Go to Table 2 of that study . You will see that of 116 patients with GT4 100% cleared the HCV. Maybe ask your Dr include that with your appeal to the Patient Assistance Program. if its not too late now to ask for reconsideration

Best wishes on this
« Last Edit: April 21, 2017, 02:46:13 am by elias »
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline elias

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  • Posts: 285
Re: terrified of ribo not sure i can cope please help!!
« Reply #5 on: April 21, 2017, 03:47:46 am »
Oh. I see from your post elsewhere your insurance is Medicaid.

Medicaid was under some harsh attacks recently by by the present regime, but that was soundly defeated by popular resistance. So for the time being, seems it remains safe. They probably wont prevail in another assault like that anytime soon

I'm not clear if you already got your medication and are apprehensive. Or if your physician put in for it and expecting them. You might still be able to appeal it for the the combo with much easier side-effects. But that might take some time to prevail. Since its a bureaucracy. It's sad because ironically Epclusa's wholesale acquisition cost is ~74K (Much lower than Harvoni) and Technivie is ~75K. So it would be in their interest to go with the Epclusa.

But if it's in fact too late to do this switch, you will find support from many on here who went thru a regimen which included Ribavirin n did fine. You've already heard from Lynn here on that

I really feel for you on this one
« Last Edit: April 21, 2017, 03:52:09 am by elias »
Contracted HCV ~age 12
Diagnosed: September 2016 GT2b
F3 by Fibrosure: 0.66
Necroinflammat activity: A3 0.76
================
VL Sep. 12, 2016: 1.44 million/ Log: 6.157
AST:71/ ALT:114   Sept. 1, 2016 Before treatment
==================
4 week after beginning  Epclusa:
Viral Load: UNDETECTED
AST 17/ALT 11
===============
Began Epclusa:  October 22, 2016
End of Treatment [EOT]: January 13. 2017
====================
EOT+4 Weeks: UNDETECTED
====================
SVR 12 April14-HCV Not Detected

Offline applepie

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  • Posts: 6
Re: terrified of ribo not sure i can cope please help!!
« Reply #6 on: April 21, 2017, 08:55:25 am »
It’s very strange how it all came about. First of all, I have not had any regular medical care for many years. I am generally wary of the medical field as they did me a great deal of harm as a young girl. That is another story. I generally only seek medical care in emergency and take excellent care of myself: I exercise, eat healthy, etc. I sought medical care several years ago after a flu caused me to have problems like I had never had before. I could feel my liver was swollen, I had heart palpitations, and terrible insomnia: I did not sleep for three days!!! All of my worst symptoms, of paranoia, etc, kicked in. I absolutely can not cope with insomnia, it completely destabilizes me. I get very paranoid. Bear in mind that I am actually a person who has lived through EXTREME trauma. I was kidnapped and kept in a wall for a week, standing up. This was over fifteen years ago. My adult son, who inherited a lot of my problems, was killed by the police three years ago.  I have a young son and husband and have fought my way back to mental and physical health. We have no family, little social support, and are working like devils to create a life for my son and outselves. 

After my flu incident, which was a huge setback, I decided to address the hep c if possible. I have Medicaid, for now. I may not quality next review. I go to a federally funded clinic, and they put me in touch with a hep advocate to help me get medication. I went for scan, it was low, I was told I was phase 2 and Medicaid would never pay for treatment. We applied for harvoni and were denied, and then my advocate had the idea of applying to Abvie patient assistance program. It was framed to me as let’s see what happens and I could change my mind at any point. My doctor prescribed technivie and I signed a release, at both their request, to let my doctor speak for me through the process. That I fear was a mistake.  He prescribed technivie and ribo and we were denied. We applied to patient assistance program. We appealed, and Medicaid did not issue a denial. Months went by, we faxed repeated appeals, nothing, nothing, nothing.

I was prepared to take these meds last winter. All of a sudden, a few weeks ago, my doctor called me excitedly. The insurance accepted the treatment, they approved it last December and somehow this approval got lost down some rabbit hole. The prescription was going to expire in three days, we must act!!! And actually the prescription had already gone to pharmacy before my doctor even phone me. So I am feeling EXTREMEMLY triggered by these events, which have given me no time to process or decide. My doctor paints everything rosy, he has no idea about hep b reactivation, which I learned on my own (I have had hep b before).

I am trying to get some dental care done but that was delayed because I had a seizure last week when receiving local for cavities. No one cares that I want to finish my dental care, when I talked to nurse as the dental clinic needs a new medical consult after seizure, her question to me was, “ have you always felt this way about dental care?” feel what way? I had a seizure, temporary amnesia, went to hospital. I am worried tooth decay could cause tooth loss, and then who will help me if my teeth fall out? I will experience further social and economic alienation, and even if I am ‘cured’ of hep c, if I am unable to support myself and son, what then? I would be better off dead, but my son, who I have carefully sheltered and who is growing up an honor role student and with a life I did not have and could not give my other son due to my poor mental health, needs me. He needs a mom with all her teeth and wits, not some shell of a bombed out treatment experiment. I have heard ribo causes teeth decay.

I just recently had an opportunity and am finally working on a project I care deeply about. I am fighting for my life! I am only 45 and have only in the last ten years achieved stability. How will ribo effect my health, am I willing and able to pay the cost, and am I being given an opportunity to truly have informed consent? It does not feel like it.

I have no other health problems, my doctor says my health is otherwise ‘pristine.’ I don’t know if I can mentally cope with rashes, insomnia and other sides. I am a person who goes into extreme mental duress even if someone cuts my hair in a way I did not consent to, I am very very particular about my body and consenting to what happens to it.



Offline applepie

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  • Posts: 6
Re: terrified of ribo not sure i can cope please help!!
« Reply #7 on: April 21, 2017, 09:07:37 am »
Note: I am not sexually active and at no risk of spreading this. I am sure my doctor and advocate are viewing my situation from a populations health perspective, and not really thinking about what is best for me. I don't feel a lot of confidence that I would receive adequate health care if complications did arise. On the other hand, will I be stigmatized at some point because of this, and refused insurance in some future world? this is my main worry. I'd like to be rid of this, but am not chasing a "cure" I want to balance my mental, economic and social  health in a way that the medical establishment, from their  "best practices" perspective, seems unable to do.

Offline Mugwump

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  • Posts: 775
  • My number of posts means nothing, piscor ergo sum!
Re: terrified of ribo not sure i can cope please help!!
« Reply #8 on: April 21, 2017, 10:10:20 am »
The aspect of receiving an undetected status goes a long way to mitigate the stress of treatment. I had troubles with riba but they only occurred in the late stages of a 48 week treatment. I did not suffer depression or "rage" just low blood counts. So if your treatment is less than 24 weeks you should not suffer serious problems with riba treatment as the vast majority who do suffer serious side effects from this treatment do so in the last stages of the old longer treatment with interferon.

For all the reasons that you have stated removing HCV from your life will give you a new sense of purpose. It is the thoughts of HCV hanging over your head that creates feelings of hopelessness and when you remove it from the equation it is life changing for this very reason.
During treatment the most important thing is to keep active mentally. Do things, anything  and do it with abandon and commitment and the treatment will be easy and fast. Learn a new skill or practice that which you do already. You will find that life will become joyful if you let it!

All the best coming to grips with this and a successful outcome, you deserve it.

Eric
« Last Edit: April 21, 2017, 10:13:30 am by Mugwump »
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: terrified of ribo not sure i can cope please help!!
« Reply #9 on: April 21, 2017, 10:29:47 am »
Dear Applepie,
Your fears and concerns are completely understandable. Lynn really summed it up nicely, and I support your questioning your doctor. Mugwump is on the right track in that "The aspect of receiving an undetected status goes a long way to mitigate the stress of treatment." However, since there are alternatives that are far easier to tolerate and the side effects are mild (if you have them at all), then why go through this?
Suggestion:If your doc can't help you get a different medication choice, then may I suggest finding a new doc.

Hang in there - we will hold your hand through this. BTW, as for sex, evidence shows that hep C isn't passed this way in heterosexual relationships, assuming you don't bring knives or chainsaws into the bedroom (sorry, I thought a little humor might lighten this situation.) 
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline applepie

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  • Posts: 6
Re: terrified of ribo not sure i can cope please help!!
« Reply #10 on: April 21, 2017, 10:57:36 am »
Thanks to everyone who replied. I  am going to see my doctor Friday and am going to slow the process down and take control of my treatment back. For me, with my psychology, this is important. I think I need a little more time to process and prepare, and to thoroughly examine all my alternatives. I was feeling rushed without regard for my social and economic health. Maybe I can go ahead in the fall if no other option is available and I will definitely seek support here when I begin.

It's helpful to know other people have experienced positive mental effects from treatment, but what about actual physical health outcomes? i guess when people get better they go away and live their life but when the treatment does not go well they linger on comments pages and that's why you hear so many scary stories?

What about teeth? I am going to finish my dental care before I start for sure. Does ribo cause tooth decay or not?


Offline Lynn K

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Re: terrified of ribo not sure i can cope please help!!
« Reply #11 on: April 21, 2017, 01:34:59 pm »
I personally have never heard about an effect on dental health from ribavirin.

Rashes are a rare side effect. I had the slightly more common side effect of anemia from my 15 weeks of ribavirin. But even so not everyone experiences anemia either. In my case we reduced the dose of riba and my anemia improved. After I finished treatment my hemoglobin (HGB) returned to normal range within 10 days.

It sounds like taking positive control of your treatment plan will help you better address the situation.

Wishing you all the best
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

 


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