Hep C Discussion Forum

Tig · Admin

RE: Week 9 sof/dac/riba

Sydhanrahan · Guru

Thanks Canuck,

your post made me feel a lot better.

Do you have any idea how long you will have to wait for treatment? It must be a harrowing time. My specialist didn't offer anything but Interferon until last November when my liver was showing signs of decompensation. Then she prescribed sof and Riba through Greg Jefferies the guy who lives here in Tasmania. He is very legitimate and my drugs arrived in a week. (the dac I got through hospital on compassionate grounds.) have a look at his blog if you aren't familiar with it. My drugs through him cost $1200au. The oz dollar is really low compared to the US dollar so,if Canada's dollar is similar to US it should be pretty cheap.

You could come and get it yourself, staying in Au while you waited for it. I'm sure Hepc friends in Australia would help with accommodation. I certainly would.

You need a drs prescription.

Take care,

Syd

Canuck · Guru

Syd,

Oh contraire! You just think you "sound" like a cranky ole lady! Or, (maybe you do "feel" a little bit like a cranky ole lady, from time to time, (since you've had no choice but to be force-fed riba!). But I would beg to differ - what you conveyed to your doc(s), you conveyed very well - a good effort, as evidenced by the result, the result is obvious. So, if you insist on typifying yourself as "cranky", then OK, embrace it! It did well by you and for you! I cannot imagine you, ever, as "cranky" tho! I only see you (from afar) with admiration - as a wise, versatile, strong person, doing an very good job under trying circumstances. But I do (now) also have a very good image in my head of you with a mallet in your hand! hohohoho (what you said in another thread!) Hold that thought dear. I have had similar episodes of rage this last decade and I'm not even ON drugs! - all me! (with unknown HCV) and/or, with or without menopause, I don't have a handy excuse for it! - but i recognise the teeth nashing! Wish there was something we could do to make you feel better - if it helps, you have my permission to use your mallet (virtually). smile C

Sydhanrahan · Guru

Thanks Canuck and Mallani,

i feel very drained today but glad of the outcome. I am usually a very passive person when it comes to conflict and took that took me way out of my comfort zone. I have a friend who can assert herself, smiling while she is laying down rules to tradespeople and health care personnel. I watch with awe. If I do try it I just sound like a cranky old lady.

Oh well, whatever the train's still chugging along.

Syd

Canuck · Guru

Hey,

Wonderful!! YOU GO GIRL! See what your hard work and perseverence did! Good for you! Comet by the tail!.

But yes, first things first ... deep breath, relax, and yes, have a wee nap (or 2) - you deserve a rest from this exhaustive work.

Sooo glad you got them cooperative. One big thing STRUCK OFF your list. Very good. C smile

PS - hey, I am having a bit of a "faaaail---yer ta ka-muni-kate" with my own specialist group, do you think I could get you to talk to them for me!! Not 'til after your nap tho!!

mallani · Guru

Great outcome Syd.

Now just relax. Cheers.

Sydhanrahan · Guru

Thanks guys,

Well the Registrar said yes! without a fight. And then phoned pharmacy to make sure that all three will be available for me on March 4 on the PBS.

he read the other Registrar's email to him. Then he said "there's no evidence to suggest you need the extra twelve weeks" and I replied "yes but there's no evidence to suggest that I don't either" then he did his phone the pharmacy thing.

My latest blood tests are written back to back on one sheet and I'm too tired to think how I could upload them as one image - suppose I could always upload 2 images!!! That's the level of cognitive function I'm dealing with here.

maybe just have a big lie down before I do anything else!!!

Syd

Zlikster · Guru

I have felt on my skin "instant hepatologists", with one gastroent. doc telling me "it's not worth getting on therapy with a small VL like yours"...luckily my present doc, althought orig. gastroenterologist, has the most knowledge and some hepatology specialisation. Not to mention few silly GPs and their advice "You do not need tx, just eat healthy" or "That is a very common viral infection, lots of people have it and live with it without problems" or few nurses that treated me like i am herion addict...

Don't worry Syd i am getting some Riba anxiety too. As Malcolm said, problem will be if you relapse (i am facing same issue). In any case i think you will achieve SVR, tho i would try to extend tx (if not 24w, maybe 16 or 20w could work?) :)

Malcolm, you think Velpatasvir won't be available sooner (at least generic)? I have seen already chinese API on the market (tho unverified).

best

mallani · Guru

Hi Syd,

I understand this is very stressful. Ribavirin doesn't help, as it causes both anxiety and depression, and distorts normal responses.

'Only a Geno 2' also doesn't help in your case. Admittedly, it usually is the most slowly progressive genotype, and all the Geno 2's I know achieved SVR with 24 weeks of Interferon/ Riba.

As you are aware, there are two standards of health care in Australia. The Private sector, for those with Insurance, and the Public Hospital system for those without. I have worked in both.

There is a slight difference between the Public Hospitals in Queensland and Victoria, however in both, you have no choice of doctor and there are always budgetary restraints.

To have a 'Registrar' tell you 'this is your last shot before transplant' is rubbish. You will achieve SVR.

There is a problem here, because Liver Clinics are being overloaded. The Gastro-enterologists are instant 'Hepatologists', and Gastro-enterology Registrars are being rotated through Clinics. They have no clout.

Good luck with your meeting. I suspect your Registrar will tell you 12 weeks will be enough. IMHO, your SVR chances with 12 weeks is between 80-90%, and > 95% for 24 weeks. The problem will be if you relapse. You will then have NS-5A RAVs, which may affect retreatment here in Australia. We won't see Velpatasvir or the Merck drugs for at least 2 years.

Sorry, but it's up to you.

Sydhanrahan · Guru

Hi Mallani and Canuck.

in answer to your first question re viral load tests Canuck, it would have made so,much sense to slip in an extra one along the way for me but their protocol is one before, one four weeks in to treatment, at 12 weeks - the end for me and another 12 weeks after that. Fortunately the Liver Transplsnt hospital did one for me on Tuesdsy. It wont be available until next week and would be great evidence to have, in a sad way, if the virus is still detectable. But the more likely outcome is that it won't be detectable, will feed into their assumptions and is more likely to be present at 12 weeks after.

i don't know the pecking order at either clinic - presume both doctors at both clinics are the a Registrars. The administrator is a nurse but she is efficient. It's turned into a bit of a political football. My specialist, who worked at clinic for ages, knows all the staff and works hand in hand with the Registrar, had a meeting with him, about me before treatment in which they decided that because it was "only" genome tyoe 2 12 weeks would be enough. (It's killing me as surely as any other genome though.)

it was a junior dr I saw at 8 weeks who made the unilateral, impulsive decision to go the 24 weeks. I should have just shut up but I wanted my specialist to approve, expected she would and didn't want to find out 2 days before the end of treatment that the junior doctors plans had been foiled.

it was at the transplant centre that I saw the Registrar who gave me the stern advice that I must make sure I get the 24 weeks " as this is your last shot before transplant." I tried to contact my specialist yesterday but wasn't in her clinic all day. I phoned the liver clinic and talked to the administrator and she has made me an appointment to see the Registrar tomorrow. I did ask there and the Registrar at the transplant hospital if I could swap to the transplant clinic but suspect both guys are part of a network and swap like that could cause embarrassment which he wasn't prepared to risk.

Mallani, I was hoping you would answer my post as I want you to tell me honestly if you think the Ribaviran is making me catastrophise this situation. ? And maybe tell me to take a chill pill and just let it unfold as it does.

I wont name the clinics as we know all the staff in these places are there because they want to help people and work themselves to the bone to it.

anyway, appreciate your input and will post again with the Registrar's decision and hopefully a new set of bloods.

thanks again.

Syd

mallani · Guru

Hi Syd,

This may or may not be useful.

My guess is that you're attending the Liver Clinic at either Royal Melbourne or St. Vincent's. You probably had your transplant consult at The Austin.

Liver Clinics are staffed by a variety of doctors. There will be a Chief Hepatologist, who probably doesn't do clinics. You would see : a Visiting Hepatologist, a Staff Specialist, a Research Fellow or a Senior Registrar (perhaps even just a Registrar). Their clinical ability is in descending order. The Clinic will be run by an Administrator, who, these days is not even a RN. There will be a number of RN's in the pecking order.

General treatment policies are decided at Clinical Meetings. Individual treatments are harder to get, and a lot rides on the seniority of your doctor.

I know a lot of HepC patients, and you are a rarity, being a Geno 2 cirrhotic. You need special attention.

You must demand 24 weeks of treatment. If your Hospital, just tell them you will obtain the extra 12 weeks of Sofosbuvir from Greg Jeffreys, and tell your story to 'The Age'.

As an aside, I think doctors ceased being regarded as 'Demi-Gods' here in the 1980's.

Sydhanrahan · Guru

So with that resolve yesterday, I phoned specialist to try to get her to change her mind and up the treatment to 24 weeks. She isn't in today.

So i phoned the nurse in charge of the program at liver clinic. she said that at the moment they are going to leave it at 12 weeks. I repeated what the head honcho at the clinic had said yesterday and told her I am not prepared to wait until March to get an answer from them because I will have no time to organise other sources. She has made an appointment for me to see that guy in charge on Friday. So one last chance to put my case to them.

i read through yesterday's post and hope I didn't sound as though I was blaming anyone here. I have had nothing but support and recommendations to take the 24 weeks from you people. I know you are Australian, Mallani, but the other moderators and members seem to be primarily Americans. I heard a comment on the radio today saying that Australians tend to regard Drs as Demi gods, their word is law and we accept their diagnosis and treatment uncritically, while Americans generally have a more pro active, involved part in their health care. Maybe it's this vibe I have picked up,and it's just another benefit of being a member here. It has made me see that I am entitled to take a proactive stance regarding my health and that message from the senior guy at the other liver clinic yesterday made it clear what the stakes I am playing for are.

So thank you once again my friends for many helping hands along the way.

Syd.

Sydhanrahan · Guru

hi Zlick,

yes I know. I'm up for taking iit, it's just getting the whole team on board to prescribe it making sure that I can continue the treatment without missing days in the middle.ive only got two weeks to organise it now.

you are not cirrhotic though are yoiu and so your chances of coming through to week 12 viral free are really high. It's that damage that is caused by cirrhosis that seems to give the virus places to hide in the scar tissue, with little blood supply that seems to make the crucial difference.

Good luck on your journey and in getting what seems right for you in any case.

Syd

Zlikster · Guru

Hey Syd, 24w ain't that bad :) I did peg+riba for 24w, some people did 48w (i know one who did 72w!), so 24w with just riba crankiness is ok :) Better to up your chances to the max, than to gamble with 12w. I am pushing to extend my tx to 16w, but my hepa ain't yet for it...

best

Sydhanrahan · Guru

Thanks Mallani and other wonderful people supporting me and so many others on this forum.

i had my appointment with the Liver Transplant Unit in another major hospital on the completely opposite side of the city today. They also have a liver clinic and I saw a really caring doctor who physically examined me and said ascites is still there but only minimal amount. She asked the head honcho to come and talk to me and the gist of what he said was that the new "miracle" drugs are probably that for people who have undamaged livers and for patients with fibrosis but that cirrhotics are more difficult to treat and that they are seeing breakthroughs of up to 30% of their patients 12 weeks after 12 week treatment regimes.,He said he couldn't recommend strongly enough that I get the full 24 weeks of treatment if I can. He said that if this treatment fails I will have whatever the acronym for mutant hep c viruses in me. I don't have the time to wait until other treatments are developed and that this time is really my last shot before liver transplant.

Now as you know, I have hung around this forum like a dog with a bone since I began treatment. my brain fog makes it difficult for me to absorb new information but there is s huge amount here or linked to other sites. I do know my body, what is wrong with it and what is the best chance of fighting it. I care enough not to make errors, like reading the bloods from the wrong date. All my life I have been a don't rock the boat, whatever you say kind of person. Blame the riba or simply being locked in a corner and fighting for my life but all that is about to change. I AM MY OWN BEST advocate. Don't patronise me, dismiss me or get your facts wrong about me, OR I will come out fighting. So right now I'm not waiting around to find out on March 2nd (3 days before I need the next tablets) whether they have approved 24 weeks. I want to know NOW because if they haven't I need to contact Greg Jefferies and get it from him.

So watch out, you guys with your gentle message of perseverence, the Ribavirun or something serendipitous has released my inner Incredible Hulk and I'm not getting off this train half way through the trip unless I'm dragged off kicking and screaming.

Hey Doctors: Dont-Mess-with-me-and-my-Riba

Syd

mallani · Guru

Hi Syd,

As you say, Geno 2 is uncommon, and has not had the number of Trials compared with the Geno 1's and 3's.

Have a look at this Reference. Particularly the bit '... consider extending to 24 weeks with cirrhosis'. That is for Daclatasvir/Sovaldi. Adding Ribavirin is extra insurance IMHO.

http://www.hepatitisc.uw.edu/go/treatment-infection/treatment-genotype-2/core-concept/all

Sydhanrahan · Guru

Hi All,

i made an appointment to see the specialist today as there were a number of questions that have been worrying me. The first is the 12 week treatment turning into 24. I will eagerly do the 24 if that makes a difference to my chances of being Virus Undetected, but I wanted to know who and why they decided to change to 24 weeks! especially since it's such a late stage of the regime. The specialist said that initially she and the head doctor at the clinic had decided on 12 weeks because there wasn't a lot of evidence to support the 24. Because I am Genome type 2, which is relatively rare here as well as in the US, there are not a lot of trials particularly of those with cirrhosis. She did say that they were hoping for a more dramatic response in my liver enzymes and maybe this why the doctor I saw decided in favour of 24 weeks without consulting the others. The specialist will talk to head guy down there again and she will get back to me regarding whether the treatment is extended or not. Like many people on this journey, I have been counting down the days and to have this uncertainty is very unsettling. Also to hear my bloods don't look as good as they should was depressing.

Tomorrow I need to go to the Liver Transplant unit in another hospital on the other side of the city. I find that quite confronting but specialist says she wants me in the system in case i deteriorate. The cut off point age wise is 65 and so I'm on the wrong side of the numbers in any case.

And guess what? I've been feeling so **** about all that, I haven't been so itchy!!

Cheers all,

Syd

Tig · Admin

Hey Syd,

Just checking in to see how that rash is treating you? Let us know if you found out anything else from the Doc regarding the blood work. I hope you found some relief for that itching over the weekend. Hang in there and keep in touch!

Make sure you're staying hydrated and DON"T SCRATCH!! wink smile

Gracie · Guru

Yea, I had the nasty RIBA rash too... Used an allergy pill called Reactin. It helped. I also used oatmeal baths. And a lot of back rubbing up against walls, which isn't technically scratching right? Lol... You'll get through it. Use ice if it's unbearable.

Sydhanrahan · Guru

Thankyou so much guys! I never would have believed how much of a difference it makes having knowledgable people who have been there, looking over my bloods and symptoms.

Syd

Tig · Admin

Hi Syd,

The "Rash", such an unwelcome part of Ribavirin treatment. I followed the recommendations Malcolm has provided, mild soap, cool showers every other day, no sun and if your doctor approves, an antihistimine like Benadryl or Zyrtec. The Zyrtec and calamine lotion helped me a lot. I considered buying a barrel of calamine and filling a bathtub with it. The pharmacy I asked about ordering it called the police, said they had a nutcase bothering the store! Ha, ha! Just try some of these symptomatic treatments on a regular basis and it will help. When you go outside, if it's sunny, protect your scalp too. I burned my scalp because I failed to wear a hat.

The good news is, all of these issues are a clear sign that your treatment is hard at work. Do whatever you can to find relief, just don't request a barrel of calamine lotion from the pharmacy, you might not get away! biggrin

One day at a time.....

mallani · Guru

Hi Syd,

You obviously have our old friend, the Riba rash. Stay out of the sun, don't scratch, only use a little baby shampoo for showers (cool water), wear loose clothes and try a little gentle calamine lotion.

Unfortunately it's common, unpleasant and fairly untreatable. Patients get irritable enough on Ribavirin, so the rash doesn't help.

Your Hb is down to 98 so you will feel tired. The decreased RBC and increased MCV are all due to Riba. Good to see the ALT is normal. The AST/ALT ratio is >1, due to cirrhosis.

If you're being treated in a Public Hospital, they will start talking about reducing the Riba dosage. If you're being treated in a Private Clinic, they won't.

Think positive. It's only for a short time. My rash lasted 48 weeks. Cheers.

Sydhanrahan · Guru

Hi passengers past and present,

I am trying to get about more this week. i have been very down as well as putting on weight and itching, itching, itching. I have a light hive like rash all over my body. There are not really very many of them but they are really itchy.

I have included my blood results which my GP did for me and will finish this and see if I can find some posts from positive people who can still laugh about it all.

The "professional alcoholic" posts made me laugh a lot.

Syd

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