Hep C Discussion Forum

freesoul · Member

RE: New...in BC, Canada...being evaluated for treatment...support?

dustbear · Senior Member

dear freesoul,

I live in Chilliwack and I went through treatment 2 years ago.

I really hope your specialist is Dr. John Farley. He is a one man crusade. I trusted him and he saved my life. He has a clinic in Vancouver and a satellite clinic in Abbotsford. He knows the treatments and he knows the medicare system.

I found a support worker in Abbotsford called Positive Living for the Fraser Valley. (PLFV) I did not find any support groups but have no fear...you have found the best support group right here.

Everyone here is on your side and they got me through the good days and the bad. Aside from your specialist, there are many here that could qualify as well.

Be positive, have faith in yourself, take small steps, ask questions and question everything.

Avoid tylenol, drinking, the sun, and St. John's wort while on treatment.

Thinking of you and wishing you the best.

Gracie · Guru

My hepologist and pharmacist both said that Tylenol is ok to take at regular dosages. Alcohol isn't Though and I do miss a nice glass of wine, but don't drink any as I want my liver to be strong enough to heal as others have shown, its possible to go back one or two Fibrosis stages after successful treatment,

Gracie · Guru

Hi Free,

I am a Canadian too, but from the east coast. I'm on 24 weeks of harvoni. They won't prescribe it to you without proof of F2 or above fibrosis (this could change or have already been changed) and you can get a fibroscan pretty easily these days Which will tell you what stage your at.

It's actually one of the best times to treat hep c with these new protocols. They are far easier than previous treatments (I've done 2), and have very high success rates.

Luckily mine are covered by mine and my husbands private drug plan, and if you don't have that, you might try and get funding from the harvoni support path.

Best of luck to you and no, you are most definitely NOT alone... We are all here for you! Eh....

Tig · Admin

FS,

I take ibuprofen and did during tx too. They recommend Tylenol (acetaminophen) for us lucky souls, but there's a limit you should take and it isn't recommended as a daily thing, but periodic use for headaches should be fine. These are the questions that you can take with you when you meet with your tx doctor.

One more thing about alcohol. Doctors and most insurers require you abstain from alcohol for at least 3 months before starting treatment and definitely during. I haven't seen many test you for alcohol (EtOH), but it can be required. So stopping now and enjoying the "Virgin" varieties and NA beer is worth considering. It's a big change and can be difficult to get used to, but the goal is to kill this beast and help your liver every way possible. It gets easier as you go and pretty soon you realize it's not as difficult as you once thought. It will save you a ton of money too! I kind of enjoy watching those around me get buzzed and you soon realize how silly they can get! Take it one day at a time. Make a game plan and stick to it. You can achieve what you set your mind to...

freesoul · Member

OH MY GOODNESS!!!! you guys are fantastic. I knew some of the websites and I thought I had looked everywhere but I never thought of looking inside the newsletters for info. Ok, so now I have some names and numbers for support groups and you can be sure I will call them and find one.

Yes, guys, I hear you on the drinking. Before diagnosis I used to drink quite regularly, seeing as to how my BF is a musician and gigs 3-4 times a week at bars. I never was a big problem drinker, but I would have 3-5 social drinks at the pub over the whole evening (and by evening I mean the 6 hrs or so a gig lasts)- it's kinda the lifestyle. This was about once or twice a week before I knew I had Hep C. Now I might have those three drinks tops, slowly over a whole night, about once or twice a month. I know that "never" would be better, and I am determined to stop completely when I start treatment.

I have a question...the drs told me not to drink and I was also told not to take painkillers (acetaminophen). When I got home, I read that Ibuprofen is just as bad. If I get headaches and for those pretty bad monthly cramps...what do you guys take?

Tig, Kathy (you sound just like me, btw- from athlete to sick is a tuff reality), Greg, everybody else- thanks so much. I really feel much better now- like I won't be all alone. Only a few people in my life know- my kids (but they are teens, and I don't want to overburden them), my partner, who freaks out when I try and talk about how I feel...and a couple of "best friends" who I rarely see anymore. So talking to others who understand makes a huge difference. That you have been so helpful too, when I am kind of overwhelmed, is super...I have no words, thanks.

I feel better...I'mma be ok :)

247kath · Member

Hi Freesoul

I totally understand the frustration of not being able to do exercise like you used to and the weight gain. I was a runner/triathlete and now get tired on a walk furious . Have gained 20 lbs

Here is a link to the latest Hep CBC newsletter. They list a support group in New Westminster smile .

http://hepcbc.ca/wp-content/uploads/minutes-agendas-newsletters/hepc-bull_2015-08-01.pdf

Here is a support group that is weekly in Vancouver. It should be easily accessible by Skytrain.

http://vidc.ca

I would suggest you get the internist to refer you to the Gastroenterology and Hepatitis clinic at VGH. They are the best! I have a friend who was treated through St. Paul's Hospital and has nothing but good to say about them too!

http://www.vch.ca/locations-and-services/find-health-services/?program_id=339

The best thing you can do is learn as much as you can about HCV and treatment options and make sure those close to you understand the importance of supporting you in your journey through this. By looking after yourself you can come out the other side and look forward to a long life!

Hang in there it's quite a journey and there will be some rough days. I'm taking the opportunity to be grateful for something everyday even if I'm a crabby bitch in my head!!

i miss beer!

Please message me for any info or just to chat.

Cheers

Kathy

Greg D · Senior Member

I looked on the back of a hepc.bull monthly newsletter at hepCBC.ca and found a couple of contacts. I hope they are current and provide some answers for you to get out of the proverbial gate. Ask them anything and everything, living in Vancouver, I'm sure they're used to it and can provide some guidance for accessing affordable hep c meds.

Vancouver HCV Support Contact Beverly 604435-3717 batlas@telus.net

Vancouver Hepatitis C Support Group Contact 604-454-1347 or 778-898-7211, or call 604 -454-1347 (Terry), to talk or meet for coffee.

Myself, I went through medicare (special authority) and had registered with pharmacare but I was in treatment a long time ago using different meds. My appointed hep doctor and hep nurse set it all up for me after my regular doctor referred me to them. At the time I was living in Prince George but matters not accept there is more support on the Lower Mainland and more doctors BUT more people waiting to get in there and see them. Hurry up and wait type of thing, that gives you time to educate yourself.

Become your own advocate by getting yourself copies of blood work results etc. (they are yours to have) and help out as much as you can by showing up for all appointments, go through the hoops, eating properly and, as Tig suggested STOP drinking right away. These drugs are very expensive and the medical system strained...if you don't do your part you will not be treated. I mean why would they right? There are many others waiting and if they have a reason to skip over you, they will. Besides, living right is good for you wink . I know...bummer but apparently we need our liver lol.

Hope this helps Alex.

Tig · Admin

More:

http://www.pacifichepc.org/hepctip/

http://www.liver.ca/liver-disease/types/viral-hepatitis-a-b-c.aspx?gclid=CLvu9o2wg8cCFdgRgQodVoMLfg

http://whdcanada.org/

http://www.phac-aspc.gc.ca/hepc/pubs/getfacts-informezvous/index-eng.php

http://orders.catie.ca/product_info.php?language=en&products_id=25758

Tig · Admin

I'm going to throw some website links out here and allow you to take a look at them. If you have already seen them, forgive me for the redundancy. I want to make sure you have every opportunity to get the help you deserve. The Community Resource Guide for your area (I think it is) is very comprehensive and covers a score of agencies. Find one that you think might apply and call. Networking among these agencies is well known and you may find someone that knows exactly where to direct you. I'm also going to provide the link to the Canadian Clinical Trials website and some other Canadian services. I have looked at don't see any active trials, but I'll keep looking. Sometimes they hide them amongst the trees!

If anyone else has some suggestions for our new friend, please add them! Thanks all!!

http://burnabycommunityconnections.com/pdfs/CRG_2014_web.pdf

http://hc-sc.gc.ca/index-eng.php

http://www.hc-sc.gc.ca/dhp-mps/prodpharma/databasdonclin/index-eng.php

Tig · Admin

Hi again FS,

There is a bunch of stuff to take in here, so take your time and don't let your mind get overloaded. It's easy to do!

Let me make another recommendation. If you're still drinking alcohol, you have to stop. Nothing and I mean NOTHING, is worse on the liver of people with Hep C, than alcohol. We use the phrase a lot, but it holds true, alcohol is pouring gasoline on a fire. It will accelerate the damage and disease significantly. So give it serious thought. (End of lecture)

The Internal Medicine specialty is one that deals with prevention, diagnosis and treatment of disease. Sometimes called Internists and some do specialize in specific systems. I would ask him/her about their knowledge and background treating HCV. If there isn't a Liver specialist available, I think an Internist can handle it just fine. Getting a current diagnosis and started on treatment is most important right now.

Keep looking in your area for leads. You might call some of the area community health agencies and ask if they have some recommendations for support groups. Some doctors offices may even be able to help with information. We'll do some looking and networking as well.

I don't know if you've seen our section on payment assistance programs. We have a list of several organizations that can help those unable to meet the expense. You will have to meet with your doctor and get a game plan established, a prescription and then contact these organizations for assistance. Stay positive!!!

http://hepcfriends.activeboard.com/t56904226/payment-assistance-programs/

freesoul · Member

Thanks for the warm welcome, everyone. I really appreciate it. I spent quite a lot of time looking around...lots of info here on treatment options and the like! I feel like I will go into this waaay more well informed now.

I tried to find a local support group- the only one I could find was in Victoria (not close). I live in New West, about 30 min from Vancouver. I would be willing to drive to the city, just couldn't find anything. I was quite surprised.

I am trying to stay calm. Like many here have said- I am now on the right path, at least. It took a while for anyone to suggest treatment, since I don't have a regular family doctor. Mine retired 3 yrs ago, just before I started to get sicker, and it's been hard to get a replacement. I have one now, but barely know him. The referral I have is for a Dr of internal medicine...whatever that means. I am not sure about that? I would also like copies of my tests but I'm having a hard time getting them.

Honestly, the recent major drop in my quality of life has been hard on me. I am only working one day a week, and I am looking for more work but unsure if I could handle it due to fatigue, meanwhile I am close to destitute...I miss running long distances (out of the question, the rashes and itching react to sweat), I miss long hikes with my daughter and drinking with friends (I cut back significantly, mostly by not going out- but my boyfriend's a musician, so that was our social life!), and I put on 20 lbs and my clothes don't fit me...and all of the above has me quite depressed.

Given all that, more than anything I am terrified of not qualifying for treatment. As Kathy said, if you don't, it's too expensive.

I don't know the first thing about how to advocate for myself or get on clinical trials. The truth is...I have never been sick before. At all. So I'm kinda at a loss. It helps to have this forum, such a great idea! I'm very thankful.

Tig- I will see about a more gentle natural soap, and talk to my Dr about the iron. It does not help anyway- I guess it's like you said, the liver can't process it? I have had low iron (15-20) for two years running, supplements or not.

Kathy, hi! nice to meet ya. And if you have relevant local info- please message me!!!

xo

Greg D · Senior Member

Hi Alex,

Greetings from Courtenay B.C. Welcome to this friendly informative forum. As you can see, people really go the extra mile and genuinely care. Your story sounds very familiar.

There are progressive support groups on the Lower Mainland, the website hepCBC may be able to help you find one close to where you live. Going to support meetings are not only informative for those on treatment but also focus on people who have not yet started. You may find a group like that to be very helpful (in your quest to start treatment), educational and comforting.

Relax and take things one step at a time.

247kath · Member

Hi I live in Langley, BC and luckily was approved for a clinical trial. I am 7 weeks into the 12 week treatment trial and am receiving Harvoni and ribavirin. I found out I had HCV in the 90's, have no fibrosis, and have genotype 3a. I got on the trial through my specialist at VGH. Where have you been referred too? If you don't mind, where do you live? There are some great specialists in Vancouver. This is a great forum with lots of people going through the same stuff. I am very grateful to have qualified for the trial as BC Med will only consider you for treatment if you already have fibrosis. I was told in January that it would cost up to $140,000 for treatment!!

Get in touch here and keep in touch as so many caring people with lots of knowledge.

kathy

Tig · Admin

Hello Freesoul,

Welcome from me too! I'm glad you found us and let us know what's going on in your world right now. It can be somewhat overwhelming if you try to handle it by yourself. Trust me, you're not alone here and you are definitely among friends. We're kind of a fun and crazy bunch, but we're a very close knit community and non judgemental. What you share here, stays here and everyone is willing to listen. I'm glad you're here. smile

As Greg mentioned, you are experiencing many of the effects of long term HCV. It's slow progressing but as it does, it starts to rear it's ugly head. The aches, pains and fatigue seem to be the first to set in. I'm glad that you're going to see your doctor soon and get this thing of ours treated. The treatments have improved leaps and bounds over what I went through, just two years ago. The success rates have climbed well into the high 90 percentile. The side effects have been reduced to almost nil and anything you do experience are certainly manageable. Since it has been so long since you had a thorough work up, that will be the first thing to accomplish. You should see a liver specialist that is schooled in gastroenterology or hepatology. They are on top of all these new treatments and diseases of the liver. You will need to have your fibrosis stage evaluated, along with a full blood workup. Those are common and necessary steps prior to starting treatment. Fibroscan is used fairly often in Canada, so having your fibrosis stage determined should be fairly easy and straightforward. Let us know when you find out what that information is and we can offer you our thoughts and opinions. We like to think that we're better informed on this disease and it's available treatments than most, lol! Everyone really cares here and we want you to know what's going on by providing accurate information and support.

Try your best to quell the fear. You've gotten past the hardest part, you have your appointment and you know what you need to do. It's a journey that seems very overwhelming to begin with, but as you progress, things will be much easier to understand and we're here to help you do that. So relax, take a deep breath and know that everything is going to be alright. If you have any questions at all, feel free to ask. Be sure to use our search function at the top. If you use a keyword or two, you'll get a selection of threads here on the forum when that topic has been discussed. You can also send a private message via your profile page, just enter the member's screen name into the TO field and you can send them a personal message. There's a lot of stuff here and it'll take you some time to navigate it all, but there's a lot of valuable information and personal insight into everything HCV (and then some).

I can offer a couple two or three bits of advice after reading your post. If you're having rashes, start with a milder soap, don't shower in hot water. Many of us either before or during treatment experienced rashes from HCV and/or the medications used. So we can offer some advice on minimizing those problems if they become troublesome. If your doctor approves, a mild hydrocortisone lotion or cream, along with an antihistamine will give you some relief. You should also be cautious of taking extra iron supplementation. A sick liver does not like iron. It can't process it correctly and it starts to build up in your system. Your doctor will be able to explain how that impacts you.

I've taken up enough of your time! But again, if you have any questions, don't hesitate to ask! Hang in there, better days are right in front of you!!!

Groupergetter · Guru

Hi freesoul and welcome. You've found a great place to gain knowledge and support. There are many here (including myself) who have, and are experiencing what you're going thru. NO you're not crazy :) just experiencing much of what this dragon brings. Classic symptoms and issues. You're on the right track, getting started on treatment is important. The Harvoni has few side effects and has a very high cure rate. I'm sure others will be along to welcome you. Good luck, the treatments have come a long way.

Nothing to fear, be your own best advocate and things will work out. Take care.

freesoul · Member

Hello,

I was diagnosed about five years ago after a standard STD panel. I was so scared. I was referred to the hospital where they performed a biopsy and said the damage was minimal, a stage 1, as I remember. No one told me the genotype or any other info, except that I was better off not being treated at that time, that I should wait for new treatment in the trial stages...Sovaldi etc, I suppose? I was to have a liver panel yearly and wait. So I waited and tried to forget about it.

I probably had HCV since either my surgeries as a small child, or my one unfortunate foray into drug use in my late teens...at least 20 yrs+.

Over the past two-three years, I have had more trouble. I used to be super healthy and fit- I ran marathons, played team sports, looked like I was a decade younger. Now I have debilitating fatigue, inexplicable sprains and strains, depression...I have stopped exercising at all. Especially after a bad bout of sweat induced rash/itching, later diagnosed as urticaria. I have had some degree of anemia for over 2 years, I take iron and eat meat but can't get the numbers up- my Dr thinks maybe it's the Hep C? I also feel very mentally confused at times.

I don't know if this could be liver-related or if I'm crazy!

On the blood work, some numbers are flagged...neutrophils (low), ASL (inching up by one or two with every test, but apparently still not bad).

I have been referred to be evaluated for treatment- my appointment with a specialist is in 10 days. I can't pay, so it will have to be approved by medicare under "special authority" and I have to somehow qualify. I don't know what the criteria is. I don't know of any support groups or trials here in BC, Canada (I am near Vancouver).

I guess I just want to talk. I feel frustrated and scared. If anyone knows anything, or just wants to chip in, or is in my area and being treated...or remembers their early days...or can tell me it gets better (lol)...I don't know, anything. I feel like I'm going nuts waiting for the test results and not knowing what is or not related to Hep C from what I'm feeling (and have been feeling for so long!) or whether I might be able to be treated or not.

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