Hep C Discussion Forum

Sydhanrahan · Guru

RE: Sof/dac/riba - 11 weeks

mallani · Guru

Carry on Syd.

I had a problem when I picked up a batch of Victrelis from the Hospital Special Pharmacy. The fridge had failed so all the meds were useless. I was down to my last dose and there was none in Brisbane. After frantic phone calls, had to get some flown from Sydney (it arrived in 4 hours!).

Life's not meant to be easy.

Sydhanrahan · Guru

Jimmy, you really made my day too. Thanks for all the help along the way.

Look forward to seeing all your work with others too.

Syd

JimmyK · Guru

Greetings Syd,

I could not sleep and all is quiet here. Got up and read your posts. That a prayer is being answered here is my firm belief.

I am incredibly happy for you right now and quite frankly you have made my day! (And it is only 3:15 am! LOL)

Your Brother

JimmyK smile

-- Edited by JimmyK on Tuesday 1st of March 2016 02:14:00 PM

Canuck · Guru

WELL!! T.G. for that! She was a good little girl then for scuttling about and trying to get it all fixed up. Good thing you were on it and checked it out early to discover the prob. What a relief that she acted appropriately. Hard to say thank you when you finally pick up your meds after what they put you through. Some more relief will come when you get the first pill of that new supply past your lips. (Get even with that guy on vacation later). Ya, way too much roller coastering. Now ... tell me, how warm that little sunbeam feels, must be nice! Man, a big fat ZERO - gotta feel good!! At least that part is VERY, VERY, VERY good, not so much the (well-put) riba-riddled-wreck part! You ARE SOMEONE else already (and I don't mean the riba), you just don't recognize her yet (probably the riba), YOU ARE amazing. smile C.

Sydhanrahan · Guru

Thank you Canuck,

yes im in disbelief too! I have been carrying this internal time bomb along with me for my entire adult life. In a strange way it has become part of my most private identity. A dirty secret, a potential life threat which in the last 12 months really towered over me, breathing fear and fire. Without it I will be someone else. And that's amazing.

i just got a call from the hospital pharmacy. The young girl who heard my,story has been chasing down doctors all day and has finally been given a prescription which she will order so that it is there on time.

Phew. Too much roller coastering for a feeble riba riddled wreck!

Thanks for your encouragement.

Syd

Canuck · Guru

OH SYD,

OMG,

WTH! I want to enjoy the sunbeam with ya and bask away!!! Roller coaster ride. Why are they SO inept, when it is SO important!!

Bubbling with both, immense joy for you, and total frustration.

Pull out all stops, NOW is the time do the dangerous cranky-lady thing with mallet in hand, until someone responsible coughs up the drugs ON TIME. Phone all your docs and nurses and get them "onto" this pharmacy too please. If it cannot be resolved immediately (by everyone unitedly lighting a fire under this dispensary) - then ask your doc(s) to phone-in another script "stat", to another (nearest) drug store instead, where it can be filled (as your back-up plan). I can't believe it! C

Sydhanrahan · Guru

Thanks Tig,

now I get it.

So do you want the good news or the bad news first?..

its gunna be the good news .... Virus undetected as of 16 Feb. Sits back squiggles down in comfiest first class train seat. Big smile on face. Now I know that's to be expected at end of week 12 and its the break throughs after treatment that you've really got to watch.but there's this bright ray of sunshine streaming through the carriage window and right down onto me. So just going with the flow for a few minutes.

Now the other news... Had another viral load done this morning at hospital - I wont know the results for a while but just thought as my 12 week treatment runs out on Thursday that I should check with the pharmacy to make sure the drugs are there for me to pick up on Friday. Remember i received a personal assurance that they would be set aside for me??

Well guess what, they aren't. The senior pharmacist is on long service leave and a pleasant young one now has the job of tracing down the paper work and hopefully securing the stuff for me by Friday. It's obviously too late to go down the Greg Jefferies route. I am waiting for a call from her now.

Happy/sad clown face Syd.

Tig · Admin

Hey Syd,

Briefly, so I don't take this off topic, let me explain the posts. They are organized basically by the Homepage category, then the subject and then the topics/threads are established by the individual member. If you are looking for a post started by an individual, you can find them by going to the profile of that member and can find posts they started and participated in. At least for a period of time. You can find your own information in the same manner. Sometimes it takes a bit of looking, but most can be found using the search function too. Hope it helps make a bit more sense.

Sydhanrahan · Guru

Thanks Canuck,

i read another post from you in a different thread - I don't understand how the posts are ordered so it's often pot luck if I read a post I am really interested in. ( No reflection on the organising skills of those collating the material, more on the holes in my own brain).

anyway it was about you waiting for treatment while you watch people boarding their trains and reaching their gaols and it made me feel very sad for you. ( As well as embarrassed that I have been whining so loudly about the symptoms I am very lucky to be experiencing.) Is the drug combo you mention the only one you would consider? Are the drugs available privately? If so, what is the cost? Is it something you could take loan out for. Your family would help with? If not what other avenues can you explore?

When my results got really bad in Nov last year my son in law came to see the specialist with me. He is s pharmacist and told her the family would not wait around any more for treatment and if necessary we would take out a mortgage and buy the drugs privately. Thsts when she mentioned Greg Jefferies and wrote out the script for Ribaviron and sofosbuvir. So instead of $120,000 it cost $2400. I think without him coming with me I would still be waiting. That is no reflection on my specialist, she just works as well as she can within the system.

Nobody cares very much for individuals within a system and that's why I am hoping you can think outside the square and come up with something that works for you.

Syd

( sorry to be a nag!)

Sydhanrahan · Guru

Hi again Malcolm,

i just stumbled upon the biopsy work you had done in January. i am so happy for you.You caught this disease serving your country and now spend countless hours interpreting results in language a lay person can understand for a big group of people here. All the while you were enduring your own testing, you were coming home to help all of us. Each of the moderators brings their own brand of encouragment and it's wonderful to get that range of support.

Your medical input, mixed with common sense and a practical approach, is a combo I have really come to rely on. Even your cynicism about fibroscans is interesting to me as mine went from 20'to 40 plus in six months and a lot of the doctors say they don't believe the 40 plus. Now I think if do achieve virus free status, I should request a biopsy too.

on behalf of all those people you have helped in the past, and go on helping, I would like to offer our profound gratitude. And of course that's extended to all the other moderators who work so hard to get us in a calm and positive mind frame.

syd

Sydhanrahan · Guru

Hi Malcolm,

thanks for your words of encouragement.

Syd

mallani · Guru

Hi Syd,

So you're at Monash and had the transplant assessment at The Austin. Both good. At least I guessed one correctly.

Don't worry about your LFT's. You're cirrhotic and this alone causes raised enzymes. My ALT was never normal during treatment and was higher than yours. The ONLY thing that matters is the VL.

Relax and let the drugs do their work. Cheers.

Sydhanrahan · Guru

Thanks guys,

it really helps to hear your words of encouragement.

i will attach three blood tests.

i started treatment on Dec 11. The first test attached is Jan 7th, a month into treatment, the viral load then was 115. The second is Feb 9th approx 8 weeks into treatment and the last one is Feb 16 at the transplant hospital.

i was disappointed with the last one but maybe it is my brain as well as my liver which has shrunken and stiffened like an old bag of walnuts.

Syd.

Tig · Admin

Hey Syd,

Canuck is right, you're not a crank and you're in the right place at the right time! If you feel like letting some emotion fly, launch it!! We'll get you back on the ground, lol! These meds do some funky things to your mind and body, so don't get too concerned when things feel a bit weird, it's normal. The pain you're feeling in your joints and muscle is par for the course. Hep C by itself causes it by itself and we've all noticed an uptick in complaints with the Sovaldi treatments. Lots of complaints of hand and feet pain, so it's best to realize that you're going to have some good, blah and bad days during treatment and for a period of time afterwards as the recovery process begins. It's a marathon, not a sprint and I don't know a single marathon runner that doesn't have an ache or two after running for gold. Just realize that you'll be on the medal stand before the year's over!

If you have any lab results, share them and we'll do our best to explain them. Don't be concerned with minor fluctuations in your labs, it's normal to see that happen. Your body is dealing with some powerful medication and it affects every system in your body. Don't let it play with your emotion, do your best to stay positive and tell your Dragon who's in charge. Confidence kills the beast!! Hang in there, I hear your train whistle blowing the sweet sound of success.... smile

Canuck · Guru

I can't wait til you get back your VL (from the 16th), that should make you feel a little better. Seeing the "few" pills you have left rattling around in the bottle should sound especially good, knowing that the troops with fresh supplies are coming to back you up now. It's a hard and bumpy ride, but you are doing it exceptionally well. Sorry about the leg/hip/lower back pain adding to your symptoms. Small comfort that you do manage a 6 hour period of unconciousness from time to time. You mentioned your most recent alt and ast, but how were ALL your most recent labs? Are they following your kidney function well now. Maybe ask tig or mallani what they think of your most recent lab results. You are NOT cranky, you are a nice person who is getting better, who did not deserve a nasty illness nor nasty sides. Keep your mental mallet close at hand, and ask the boys what they think of your most recent labs. Canuck

Zlikster · Guru

:) great you made it to persuade em for ext!

You ain't allowed to see your results??? Whats wrong with em? You ain't on blind clinical trial...how much did your ALT/AST jumped? I am pretty sure 24w of Sof+Dac (+-Riba) will do it's job :)

best

Sydhanrahan · Guru

hi everyone,

compared to many of you, waiting for trials or wondering whether to import drugs, I know I am very lucky.

The hospital okayed the 12 week extension and so hopefully, when I go for my 12 week checkup next Friday there will be a month's supplyof the three at the pharmacy. Now I'm down to 6 previous little pills of sof and 6 of dak.

The transplant clinic did do a viral load on Feb 16th but because I'm not a doctor I'm not allowed to be given my own results. I went to the pathology places round the corner today, with a prescription for liver function tests and also viral load. That way at least I can access the results through my own GP. I need to do the same thing at Liver Clinic next week. Seems like a great waste of resources but once I am out of there I won't know the answer for another month. The other reason i didn't post my latest results is that some, eg. alt and ast, had actually gone up a bit. Maybe different lab, maybe unsuccessful treatment??? Took me a while to realise that I was finding it hard to process those options.,

There is just so much excruciating waiting involved with these programs isn't there? Most of the posts I read refer to it in some way or another. I've never been a patient waiter, throw a bit of Mindfulness at it and it will recede into the background, kind of person. Suppose now's the time to start practising.....

As for symptoms - I feel less tired now than I had been both before and during treatment up to week ten. Itchiness still there but not as bad as it was earlier.still having trouble getting to sleep. When I do go to sleep, I'm unconscious for 6 hours and then usually that's it. UPQ pain a problem earlier on but has virtually disappeared. Still cranky, depressed and unsociable. I have a bit of my motivation back but only about ten percent. My main physical problem now is the aching and pain thst seems to travel from myknees, to my hips and into my lower back. I can't blame it on the treatment, although it is severe at the moment, but I had it before treatment too. Side effect dodgy liver?? I don't think it's arthritis as it travels across those three areas.

Good luck to all those on the train, waiting for a train or waiting for that 12 week mark the end of the ride.

Syd

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