Author Topic: Viekira Pak - Started June 13 2015 (Read 41337 times)

Phoenix · « **on:** June 24, 2015, 09:49:10 pm »

Greetings to all on this Journey

I’ve learned a lot from this great site. I wish to thank everyone who posts and wanted to share my own experience with this disease. Infection date; late 70’s. First diagnosed 1980? Did nothing for 20 years or so. Drank little or no alcohol nor took very few drugs, recreational or otherwise, during this time.

May 2001, Started to develop peripheral neuropathy, for which no cause could be found. Blood test same time revealed GT 1a, AST43, ALT63 and VL 8 million. Had Liver Biopsy in 2004. Results showed on scale of 1 to 22, (not sure of scale) my liver was a 2, very slight damage after 25 years. Liver Doc told me treatment was worse than the disease. Next 10 years, no treatment. I followed a diet of no alcohol, fried foods and totally gluten free. During this time AST & ALT were always just slightly elevated.

June 2014, I started to be unable to digest protein. Started with sushi, then red meat. Seemed to progress quickly. Started getting a severe rash on upper chest & neck area. I eliminated all diary from my diet and the rash went away.

Jan 2015, it got to point where I could not eat any animal protein. The food would just sit in my stomach if any protein was included. Started diet with almost all fruits & vegetable with some carbs. Used pea & rice protein in small doses. Soon started to get hard to digest any food, protein or non-protein. Started to lose weight and strength.

Feb 2015, diagnosed with Non-Hodgkin Lymphoma. http://www.ncbi.nlm.nih.gov/pubmed/23542089 A mild case, where again, treatment would be more aggressive than the disease. Cancer Doc thought the condition might be related to HEPc, but would not commit to putting it in writing. MRI scan showed no masses or causes for the lymphoma. MRI of liver looked like it was in good shape. He told me about 10 times that I should start HEPc treatment. In Feb 2015 also saw a Neurologist. Nerve Doc thought that the neuropathy could be related to Hepc. http://www.hindawi.com/journals/jir/2012/236148/

Mar 9, 2015, started the request to get treatment with HMO. Had many blood tests, one of which revealed the ammonia level in my blood was quite high, which causes Brain Fog and leads to Hepatic Encephalopathy. I was put on Lactulose and my ammonia level is now in the normal range and my thinking is much clearer. Also found my blood pressure was getting higher. Had always been low but was now 150/90. Was given Atenolol (beta blocker) to lower BP and it has helped.

Against my request to see a Liver or GI Doc, I was referred to the Medication Management depart of my HMO. I was told I should get another liver biopsy, but refused because of my low blood platelet count and the delay of getting the biopsy scheduled. Opted for the FibroSure blood test which came back F4 for cirrhosis and A3. Would not recommend liver biopsy to anyone as it is very painful and blood tests seem just as accurater. http://www.ncbi.nlm.nih.gov/pubmed/20034694

After more tests and delays, I was given a script for Harvoni. BlueShield quickly (next day) denied Harvoni, but did authorize Viekira Pak. After looking at the similar success rates of both treatments, the advanced F4 state of my disease, the need to take RIB with both treatments and most importantly, the desire to start treatment three months ago, I took the path of least resistance and choose Viekira.

I did need to stay on top of the authorization process, constantly following up with Medication Management and my Primarily Care Doc. I kept many files and made notes about every step in the process. Follow up is the key. Blue Shield and Walgreens Specialty Pharmacy were both great and worked with the HMO on my behalf. Just remember to document everything and keep a diary.

June 13, 2015 – I took my first dose of VPak and became a Viekarian

, on the road to Wellness. My sad liver was starting to shut down. I know this treatment will cure what ails me and make it smile once more. These break thru treatments have, in my case, arrived just in time. I thank GOD for everyone involved in the process, including this GREAT WEBSITE!

I’ll post my 2 week labs soon.

Success and {{{+ + + +}}} to everyone

KimInTheForest · « **Reply #1 on:** June 24, 2015, 10:13:10 pm »

Welcome to the forums, Phoenix. And congratulations on starting treatment! I found your story very interesting to read. Thanks for sharing it in such detail.

How is your treatment going? I am on Week 8 of 12 of Harvoni+Riba. So far so good. No major issues or problems.

Good luck to you!

best,
kim

Phoenix · « **Reply #2 on:** June 24, 2015, 10:44:46 pm »

Thank you Kim. I tried to include details that would help others on their journey.

The treatment is going well. Only problem was mild heartburn, which I have eliminated by taking the meds with a meal. Not before or after, but between bites.

Positive effects include more energy, clearer thinking and a feeling of euphoria (a listed side effect). Also digesting food seems to be improving, as well as my sleep patterns.

Best of luck to you,

Phoenix

KimInTheForest · « **Reply #3 on:** June 24, 2015, 10:48:57 pm »

A question for you, Phoenix: What was the method for diagnosing your Non-Hodgkin Lymphoma in Feb 2015? Is there a simple blood test that does this? Or is something more invasive required like removal of a lymph node?

Thanks,
kim

Phoenix · « **Reply #4 on:** June 24, 2015, 11:09:54 pm »

Blood test in December 2014 revealed high WBC and Lymphs, like I was fighting an infection (the elephant in the room). An MRI was done and found no problems with lymph nodes or masses in any organs, including my liver. MRI was type where you drink a solution and also have an IV, both for contrast.

Also required a bone marrow sample from top of hip bone, done in the doctor's office and not too bad. All blood based cancers have something to do with the marrow.

Interesting link in post above shows that Lymphoma usually goes into remission after Anti Viral Treatment (AVT) for HCV. I'm hoping that's the case for me!

Thanks,
Phoenix

KimInTheForest · « **Reply #5 on:** June 24, 2015, 11:21:01 pm »

Thanks for the info, Phoenix. Yes, I did notice that in the abstract - that that type of lymphoma goes away once the HCV is eradicated from the body. Good luck to you!

kim

sapphire101 · « **Reply #6 on:** June 25, 2015, 12:19:32 am »

Welcome Phoenix.
Can you share a bit more about where you found that link you posted. What is it all about and how to you use it? Looks like it could be resource for a lot of current information. Thank you for sharing this and your story.

I have heard about the link between HCV and lymphoma. No doubt your treatment will help with both. Best wishes to you on this journey.

Phoenix · « **Reply #7 on:** June 25, 2015, 07:43:01 pm »

sapphire101

Thanks for the welcome!

EASL and NIH are good sources of scientific info regarding all things HCV.

As I encountered conditions for which their was no apparent reason I would research to see if there was a connection to HCV. Apparently HCV is not only a threat to your liver, but causes many other conditions, most of which I am dealing with.

This allows me to focus on Slaying the Dragon and not stressing about secondary conditions that it creates. Once the HCV is gone, the other problems will be gone.

Best of Luck to you

Philadelphia · « **Reply #8 on:** July 05, 2015, 03:23:35 am »

Greetings from another Viekerian! I'm on the same treatment path as you - 24 weeks with riba. I started on 24 March.

I'm accessing Viekira Pak through a compassionate access program here in Australia as none of the new DAAs are available here yet. Evidently I'm sick enough to need it!

I have a thread here that talks about my path through treatment, and I also blog my life w HCV and talk about treatment. Link is in my sig.

All the very best, this is a good time to be accessing treatment.

Phoenix · « **Reply #9 on:** July 06, 2015, 02:18:37 pm »

Thanks Philadelphia! I enjoy reading your blog.

Best of luck to you on your treatment!

I received my 2 week blood tests today and I'm so happy

. AST went from 141 to 31 and ALT went from 142 to 20. Viral load to be done at week four. One thing out of range is my creatine. Range is 24-204. Baseline was 142, now 266. Doctor said to drink more water. Kidney function is normal at this point. We'll see what it looks like at week 4. Also, my platelets are still low, 130, and the range is 150-379. Baseline platelets were 139.

I must say I'm feeling 100% better than 1 month ago. Every day seems to improve. Taking the medication at the same time each day, with food, is an adjustment for me. I'm used to eating when hungry, not a specific time twice a day. For now I've eliminated coffee from my diet. It has helped with less heartburn and ability to sleep more soundly.

Hard to believe that they have come up with these miracle drugs to finally get rid of this virus! I remember checking in every couple of years to see if new treatments were available, always to be disappointed.

It is my hope that everyone that needs this treatment gets it.

Philadelphia · « **Reply #10 on:** July 06, 2015, 05:39:38 pm »

My creat bumped up too, and my e-GFR went down. They keep a close eye on kidney function but like yours no doubt will, mine stabilised. Your platelets are pretty good! I started treatment with mine at 70, so I'm looking at yours with jealousy! Have you had an increase in your bilirubin?

I'm glad you are feeling well, I get tired but I'm blaming the ribavirin

Phoenix · « **Reply #11 on:** July 06, 2015, 07:01:54 pm »

Yes, my bilirubin has increased from .6 to 1.2, to the edge of the high range.

I was pretty tired when I started the treatment, maybe from the malnutrition aspect or the advanced state of the fibrosis. Definitely feel younger at times, then that 15 minutes passes.

Do the sides stabilize or are there surprises down the road? You're more than half way there. On the downhill slide! Wind at your back!

Philadelphia · « **Reply #12 on:** July 06, 2015, 07:23:48 pm »

I felt much better after the first month and sides, although annoying, became distracting not debilitating.

Every blood test has thrown something new my way: the bilirubin, then the renal markers, then glucose levels, then continued hb drops and bili increases past when it is meant to stabilise. Now I do a kind of lucky dip of what could possibly be the next thing to be weird

It's almost entertaining. Almost.

dearprudence · « **Reply #13 on:** July 07, 2015, 05:38:30 pm »

Hi Philadelphia, just posted on another topic asking how you were. I know we are very close with treatment - May 3rd start for me - and wanted to compare notes. Doing well as red count continues to fall and RDW slightly out of range. 3 1/2 weeks to go and feeling pretty good - actually feeling the best I've felt in a long time - even with the tiredness creeping in towards the end of the day. Sometimes sleeping 10 hours!
Hi Phoenix - welcome - and good luck to you! Keep on drinking that water!

Philadelphia · « **Reply #14 on:** July 07, 2015, 05:45:32 pm »

12 week update:

ALT 21
AST 23
GGT 28
Albumin normal-ish - 39

Creat/e-GFR normal

of course the weird results are my bilirubin and haemoglobin again - 52 and 109 respectively.
^
Ribavirin, I'm looking at YOU.

Good numbers overall and I'm happy

Philadelphia · « **Reply #15 on:** July 07, 2015, 05:51:52 pm »

According to my finely honed mathematical skills (j/k) I'm now 15 weeks through more or less with 9 to go. More or less. My weeks left are now in single digits.

Dearprudence, mostly I blog stuff, although I admit much of it is rambling thoughts devoted to life w hep c and attempting life without hep c. I'm always sure I write too much most of which is irrelevant and self-obsessive,but there you go. If you really want to see how treatment is going, that's where you'll find it. Link in sig

Phoenix · « **Reply #16 on:** July 07, 2015, 06:12:57 pm »

Philadelphia - What does GGT stand for? Is GGT important to monitor? Thanks

dearprudence - Thanks for your welcome! Are you doing 12 weeks with no ribavirin? How many weeks before you were "undetected"? Good luck on your treatment!

dearprudence · « **Reply #17 on:** July 08, 2015, 05:37:04 am »

Quote from: Phoenix on July 07, 2015, 06:12:57 pm

Philadelphia - What does GGT stand for? Is GGT important to monitor? Thanks

dearprudence - Thanks for your welcome! Are you doing 12 weeks with no ribavirin? How many weeks before you were "undetected"? Good luck on your treatment!

Hi Phoenix, thanks! I started vpak and riba on May 3 rd and undetected at 3 to 4 weeks. ALT and AST steadily moving down. 3 1/2 weeks to go. Keeping an eye on the hemoglobin / RBC. Feeling quite good. Keep us posted on your progress.
Prudence

Philadelphia · « **Reply #18 on:** July 08, 2015, 06:13:27 am »

Phoenix, GGT is gamma-glutamyl transferase. It indicates liver damage, like ALT and AST, but is very sensitive and can be set off by a range of things.

It was the last of my liver markers to come back into normal range (I started treatment with it being 100 and now it's 28) so it's just another thing to keep a eye on.

Phoenix · « **Reply #19 on:** July 22, 2015, 11:47:30 am »

Greetings to all. My 4 week blood work shows virus UNDETECTED!!! I just can’t believe my good fortune. So grateful for a second chance at a normal life. To be free of this opportunistic virus is a true blessing!

All other blood work improving. RBC related items are steady, so no anemia. Slight issue with kidney related stats, but they are improving. Will need to monitor kidney function more closely. Overall, I feel better, but I look forward to the end of treatment.

Physical side effects have been minor. Slight cough and throat irritation. Eliminating coffee has helped with heartburn and insomnia and I don’t miss it. I know coffee helps prevent fibrosis and cirrhosis, but I’m way beyond prevention. I need to focus on reversal. If coffee can help with the reversal, I’ll being drinking gallons when this trip is over.

Psychological side effects are also present. Each day I feel I am on a 16 hour overseas flight. My body has changed at a cellular level, like when you’re going 500 mph. I can handle the sensations of the flight, but do not enjoy them. I’m happy the flight has departed, but look forward to landing and the flight to be over. Like turbulence, every pain, ache or body reaction makes me worry if I’ll survive the flight. I am at the mercy of this technology. I have to remind myself to relax and focus on the destination, not the journey. I sleep well, but wake up feeling jet lag…. then catch the next flight.

Hope everyone’s treatment is going well.

Philadelphia · « **Reply #20 on:** July 22, 2015, 05:34:19 pm »

Great results, and fantastic analogy! It sums up treatment so well.

dearprudence · « **Reply #21 on:** July 23, 2015, 01:42:42 pm »

Quote from: Phoenix on July 22, 2015, 11:47:30 am

Greetings to all. My 4 week blood work shows virus UNDETECTED!!! I just can’t believe my good fortune. So grateful for a second chance at a normal life. To be free of this opportunistic virus is a true blessing!

All other blood work improving. RBC related items are steady, so no anemia. Slight issue with kidney related stats, but they are improving. Will need to monitor kidney function more closely. Overall, I feel better, but I look forward to the end of treatment.

Physical side effects have been minor. Slight cough and throat irritation. Eliminating coffee has helped with heartburn and insomnia and I don’t miss it. I know coffee helps prevent fibrosis and cirrhosis, but I’m way beyond prevention. I need to focus on reversal. If coffee can help with the reversal, I’ll being drinking gallons when this trip is over.

Psychological side effects are also present. Each day I feel I am on a 16 hour overseas flight. My body has changed at a cellular level, like when you’re going 500 mph. I can handle the sensations of the flight, but do not enjoy them. I’m happy the flight has departed, but look forward to landing and the flight to be over. Like turbulence, every pain, ache or body reaction makes me worry if I’ll survive the flight. I am at the mercy of this technology. I have to remind myself to relax and focus on the destination, not the journey. I sleep well, but wake up feeling jet lag…. then catch the next flight.

Hope everyone’s treatment is going well.

Yay Phoenix! Agree with Philadelphia, great summation of our treatment! We just keep on going!
Prudence

Phoenix · « **Reply #22 on:** July 24, 2015, 09:10:11 am »

Thank you Philadelphia & Prudence,

Appreciate your support! 1/4 of the way there. Still a long way to go, but better as each day passes. At the end of May I was scared. That's been replaced with a feeling of peace and tranquility. Wishing the same to everyone on this journey!

Philadelphia · « **Reply #23 on:** July 24, 2015, 10:00:54 am »

It seems like a long way, it really does. Then one day you wake up and you are 1/4 of the way through. Then 1/3. Then 1/2. Then all of a sudden you only have 7 weeks left to go. In another week you'll be 3/4 of the way to finishing.

Once you get around 10 weeks time starts to become irrelevant. It just passes.

Phoenix · « **Reply #24 on:** August 22, 2015, 01:15:04 pm »

Greetings,

After 8 weeks, starting to get into the groove. Latest blood work is good, except; RBC count is low (4.12) and bilirubin is high (1.4). Doctors think everything looks great, so I'm not going to stress about it.

Feel good, but easily fatigued. Tried to go to mountains to relax, but the thin air is not good for me at this time. Was very sensitive to light for weeks 6 & 7, but it's not an issue anymore. Maybe just normal summer allergies, amplified by meds.

Less than 100 days to go. Can't wait to start my new life!

Wishing Great Health and Good Fortune to everyone on this path.

Philadelphia · « **Reply #25 on:** August 22, 2015, 06:02:08 pm »

Persistence will pay off. I'm a bit over two weeks from finishing The Meds That Never End.

You will be too.

Sounds like riba is hitting you, as it does many, but your 24 week course has very good cure rates, so think of that every time you take a handful of tablets!

Cal · « **Reply #26 on:** August 22, 2015, 07:08:11 pm »

Hi fellow travellers,
My name is Cal, I am in Australia and I am Geno 1A for 30 years. Non responder from 2011. I am not cirrhotic. I am doing 12 weeks with ribas. Compassionate Access.
My previous tx failed because I ended up in a psych unit because of agitation. Not anxiety BTW. Very different.
I have started the Viekira Pak AbbVie. I am on Day 3 and experiencing breathlessness and weakness mostly by the afternoon so far.
I am anxious because of the last tx debacle which I have never got over, it was awful.
I have read as many threads as I could access (still learning how to

) and see it is a very successful tx which is exciting. I am ready to do what it takes. But I would really appreciate some support from you very good and clever people. Thanks. Cal

Phoenix · « **Reply #27 on:** August 22, 2015, 07:28:42 pm »

Greetings Cal,

What you are experiencing is typical. Just be good to yourself. Try to eliminate as much stress as possible and stick to a routine. The twelve weeks will pass quickly. You should start to feel better in a week or so, as your liver will start to get stronger. If you like, you can put your stats into the "forum profile". Best of luck!

Phoenix · « **Reply #28 on:** August 22, 2015, 07:33:09 pm »

Thanks Philadelphia!

I'm nearing halfway up the mountain. See you at the top!

Hope your treatment is going especially well for you.

You're Almost There!!!

Philadelphia · « **Reply #29 on:** August 22, 2015, 07:42:17 pm »

Hi Cal, from a fellow Australian. Don't overthink the treatment. This is not interferon. Yes, you've got riba, but when combined with VP it is much moretolerable than when put with inf. Discontinuation rates are incredibly low. Stay the journey.

Practice your calming techniques, keep breathing and embrace the treatment. It will make a difference.

Cal · « **Reply #30 on:** August 22, 2015, 07:56:49 pm »

Thank you Phoenix and fellow Australia Philadelphia!
You have out my mind to rest. I am over thinking. Ifn left it's lasting impact on me. So happy to hear that the ribas wont be as revolting without ifn.
I look forward to feeling better in a week.
I knew there would be sxs from the ribas but not from the Veikira Pak combo. I was told emphatically there would be no sxs! I should know better.

I really appreciate your support and words of wisdom. I shall be posting often, I hope this is the right thread? I shall fill in my profile as much as I know. I haven't got a copy of my pre tx bloods and haven't had a fibroscan yet.

It's so good to find a forum with txers on Veikira Pak, as Philadephia would attest, there are not many in Australia yet.
BTW is this a U.S. based forum?
Thanks Cal

Philadelphia · « **Reply #31 on:** August 22, 2015, 08:09:57 pm »

You can use this thread or you can start your own. Of course if that advice is incorrect I'm sure one of themods will correct me.

Most of the people here put their important facts and figures in their signature. Helps you know at aglance what people are taking, their geno, and their results this far. It is helpful, although at first it just seemed to me like a big spaghetti jumble of abbreviations.

Yes this is a US forum. As such there are many Harvonians here, and just a smattering of Viekirans. You'll find us though. We might be small in numbers but we are generally rowdy in disposition.

What hospital are you through? I'm at St Vincents in Sydney.

Cal · « **Reply #32 on:** August 22, 2015, 09:08:49 pm »

HI Philadephia,
I am in Brisbane. Greenslopes Hospital. My previous tx was a trial at the Royal Brisbane. SO you're a Sydney Gal? Cal

slats1056 · « **Reply #33 on:** August 22, 2015, 09:32:47 pm »

Howdy there Cal ad Phil-o!!!!
How about a Global Coalition Forum for the Eradication of Hepatitis. The goal being a cure for all and Meds for the masses. What with You Aussies,the Brits, the Canadians,plus everyone here in Texas & the rest of the States(LOL), it's only based here! I believe it transcends all boundaries. How is winter going? More to the point how are Y'all holding up? Had a little relief from the 100 plus temps. here. Hope all is well down under. BTW, How did You say it? I'm having some bickies & a cuppa as I post this!!!!LMFAO!!
Here is to Your health & Your Happy Dance at the SVR party!!!!

Philadelphia · « **Reply #34 on:** August 22, 2015, 09:46:51 pm »

Me? Gosh no, I live in Tamworth, home of country music, twangy guitars, boot scootin' and the Big Golden Guitar. St Vinnies Sydney is where my specialist is, a man I openly worship.

Philadelphia · « **Reply #35 on:** August 22, 2015, 09:55:04 pm »

You've got the lingo down pat Slats. All you need to add there is "a good lie-down"

A cuppa, some bickies and a good lie-down.

Cal · « **Reply #36 on:** August 22, 2015, 10:12:19 pm »

HI Slats,
I'm just about to have a cuppa actually

and I need a good lie down!

Downunder is good. I live a little more North than Tamworth so our winters aren't terrible. Though I do feel the cold a lot more than others.

Texas hey? Hi Y'all. Cal

Cal · « **Reply #37 on:** August 22, 2015, 10:13:36 pm »

HI Philadelphia,
Tamworth hey? You lucky girl. Do you go to that huge party every year? Cal

slats1056 · « **Reply #38 on:** August 22, 2015, 10:17:15 pm »

Am I correct in assuming that a good lie down would be the same as going ten toes up & checking Your eyelids for holes? LOL

Cal · « **Reply #39 on:** August 22, 2015, 10:18:54 pm »

HI all,
I made a separate thread "Cal on Vierkira Pak & Ribas" and people are reading it but not replying. Should I cancel it and just stay here? Cal

Cal · « **Reply #40 on:** August 22, 2015, 10:19:51 pm »

You would be correct Slats

Philadelphia · « **Reply #41 on:** August 22, 2015, 10:27:39 pm »

People take time to reply to stuff. The beauty of having a thread of your own is that you can keep a record of how treatment is going for you.

Cal · « **Reply #42 on:** August 22, 2015, 10:49:49 pm »

Thanks Philadelphia. Cal

dearprudence · « **Reply #43 on:** August 23, 2015, 06:03:58 pm »

Quote from: Cal on August 22, 2015, 10:18:54 pm

HI all,
I made a separate thread "Cal on Vierkira Pak & Ribas" and people are reading it but not replying. Should I cancel it and just stay here? Cal

Hi Cal, I just answered you on your separate thread with some of my own experiences.
As has been said here, don't worry too much, take one day at a time and your treatment will be over before you know it!
Prudence

drummerman · « **Reply #44 on:** August 23, 2015, 06:41:29 pm »

Cal,

People reading your thread and not replying is a good thing. People are learning from your experiences even though they may not reply. Plus, like Phlly, said it allows you to keep an online record. You might want to print it out and put in a safe place as sometimes these sights go down. In the future you might need to refer to it. I know i did from my first tx.

I was keeping a laptop journal... mostly about dealing with the most incompetent online pharmacy in the us. (btw - I got a call from them the other day from a lady who sounded completely intelligent, spoke english and I could understand every word she said. I did not recognize the number ... but I saved it and have used it. Each time I am connected with a well spoken, competent, easily understood, helpful agent. I think I raised so much hell that they decided to hook me up to the smart tech line. This number is NOT listed on their website. If you think you might need it and use the same online pharmacy, pm me and I will send it your way. Largest online pharmacy in the U.S.)

anyway, I quit doing journal entries when I noticed each day said "heart pounding, anxiety, queasiness, winded easily, slept well, ate well........ I could just copy and paste each day. This was the 2nd and 3rd week. 4th week to present everyday gets a little better. Queasiness almost not existent. Still get winded but less everyday, heart still pounds but for shorter periods each day.

I keep reading that side effects mean the meds are working... I hope that sides lessening don't mean meds are not working,

Anyone else experience less intense sides after the 3rd and 4th week. (viekira/riba).

(sorry this post is all over the place. Just kind of the way my head is working at this time)

dm

ms.nomoreC · « **Reply #45 on:** August 23, 2015, 07:14:35 pm »

Hi Cal,

I noticed that the shortness of breath stabilized (as did my RBC's and hemoglobin)--I'm going on week 11. It's still there, but I think I just got used to it. What I notice now is that my brian feels foggy, like it's not working quite the way it has in the past, though to be truthful, nothing seems to work like it did in the past, and I'm not sure that has to do with V/RIBA, HCV, or just getting older.

Philadelphia · « **Reply #46 on:** August 23, 2015, 09:53:19 pm »

drummerman, I noticed a reduction in sx after the first more or less month. Of course I was riba-reduced from Week 3 onwards, so I have no idea how much was the reduction and how much has been stabilisation. I choose (probably very unscientifically) to believe that those early weeks were challenging because the drugs were killing the virus and my body was coping with the die off.

I get tired and my get up and go seems to have got up and gone, but like ms nomorec, I don't know how much of that is old age, how much is laziness and how much are the drugs.

Phoenix · « **Reply #47 on:** September 23, 2015, 01:37:59 am »

Greetings,

Received my 12 week blood work and everything is normal, except the RBC and other blood work associated with the ribavirin anemia. The low blood counts are just shy of the bottom range, but I can certainly feel the effects, both mental and physical. Getting plenty of rest and trying to get thru one day at a time.

I've tried to increase the amount of iron rich foods, as well as adding more protein to my diet. Almost at the end of 14 weeks of treatment. Other than the anemia, I'm beginning to feel normal. By normal, I mean my digestion and the ability to eat without discomfort. If it wasn't for the tiredness, I'd be zipping right along.

Would like to start exercising again, but just want to pace myself for another 10 weeks. Best not to stress out my heart at this point. Focusing on my liver

Best of luck to everyone on this journey.

Philadelphia · « **Reply #48 on:** September 23, 2015, 06:13:18 am »

Great news Phoenix! You only have 10 weeks left - you've passed the halfway mark!

I'm done like a dinner. I felt like you did for the last part of treatment - suffering treatment sx, not hep C symptoms.

I was nearly 2 weeks late with my EOT tests, so 10 days post treatment I am still undetected. I'd like to add that I had a riba reduction in week 3, from 1000whatsigrams to 400 whatsigrams. So I'm pretty chuffed.

Cal · « **Reply #49 on:** September 23, 2015, 06:30:33 am »

Nice one Phoenix. Half way. You sound great, wanting to exercise. Wow! I,m still enduring the sxs of tiredness, anaemia, aches and pain, mad rashes, just the usual! Well done. Cal

Phoenix · « **Reply #50 on:** September 24, 2015, 09:32:03 pm »

Thanks Philadelphia, I appreciate it. Congrats to you in completing the program! Amazing times that we live in! We all get a new lease on life. Enjoy yours.

Have you started to notice an improvement in your ribaviran related sxs since you've stopped taking the daily dose? I was told to try to increase the amount of iron in my diet to help counter the effects. Eating spinach like Popeye!

I've thought a few times each day to reduce the amount of riba, but somehow I get through it. One day I'm up, the next.... The sxs seem to be something that continues to increase, not level off. Keeping a close eye on the blood work and looking forward to the completion of this treatment.

Phoenix · « **Reply #51 on:** September 24, 2015, 09:39:12 pm »

Thanks Cal. Best of luck to you! Twelve weeks sounds nice to me at this point! All in all, it has not been that bad. I know the riba helps to bring an end to the virus, but at this point, the solution has become the problem.

Very grateful for the treatment, but looking forward to the end!. Nine more weeks to go. Appreciate the support of yourself and others on this site. It has been helpful at a difficult time in my life.

Cal · « **Reply #52 on:** September 24, 2015, 11:12:26 pm »

Hi Phoenix,
Thanks for you good wishes, much appreciated. Yes if only we didn't have to take ribas! The first time I took them in 2011, I reacted badly. They took a long time to get over too, Not a nice drug but bitter sweet all the same. I am on a reduced dose. I am on 3 a day. I was on 5. My Specialist said that I only needed 3 and my anaemia was proof of this. I hope they are keeping a close eye on your blood count? Always good to know where you are and if you are one of those wh needs less. My friend finished ifn and ribas 3 months ago and svr'ed so far, she has another 3 months till final svr. But she was on half the dose for half the time! She was taken off it because she was too ill, even on reduced doses. But so far so good. We are all different. Personally, if my Doc said lets up the ribas again I would for fear of not svring. This is our chance and I am not doing this a 3rd time!!!!!! Cal $:-\$

byebyeC · « **Reply #53 on:** September 26, 2015, 06:03:44 pm »

Hi Phoenix,

Wow, what an informative, interesting and slightly scari-fying link! All in all, great information about the current state of extra-hepatic issues.

Thank you for sharing!

How're you doing?...

Cal · « **Reply #54 on:** September 26, 2015, 06:45:56 pm »

Hi Phoenix,
Thanks for the ammonia heads up. I have brain damage which they are hoping tx will reverse. I hope so. I am in a fog all the time. I am Nemo. :-\cal

byebyeC · « **Reply #55 on:** September 26, 2015, 06:50:59 pm »

You've some company in that fog Cal

Cal · « **Reply #56 on:** September 26, 2015, 06:53:09 pm »

Who are you again Marianne? Cal

byebyeC · « **Reply #57 on:** September 26, 2015, 06:53:53 pm »

Bahaa Cal!

slats1056 · « **Reply #58 on:** September 26, 2015, 10:19:18 pm »

Did she say DAIN BRAMAGED?

Phoenix · « **Reply #59 on:** September 26, 2015, 11:41:18 pm »

Hi byebyeC,

Thanks for your post. Didn't mean to scare anyone. Doing much better than 13 weeks ago. Liver seems to be back to normal. Sick of the Riba sides, but all in all coping. Lack of sleep and being too emotional at times are the main complaint at this point. Trying to keep the stress down to a minimum and eating well. Eating more protein and iron rich food seems to be helping with the weakness I've been feeling. Sparingly taking low dose sleep aid to help make sleep bank deposits zzzz.

Good luck on your journey. You'll feel better in a few weeks. Please pace yourself. These meds are rearranging your liver at a cellular level. Drink lot's of water and take meds with food to avoid headaches.

Philadelphia · « **Reply #60 on:** September 27, 2015, 07:10:07 am »

Phoenix, my haemoglobin jumped from 102 to 111 within 10 days without me doing anything at all. Just getting up and breathing each day/ No special food, no supps, just existing. My bilirubin dropped from 50 to 19. So I have been pretty pleased.

drummerman · « **Reply #61 on:** September 27, 2015, 07:44:41 am »

[quote

I get tired and my get up and go seems to have got up and gone, but like ms nomorec, I don't know how much of that is old age, how much is laziness and how much are the drugs.
[/quote]

Know what you mean!

dm

Phoenix · « **Reply #62 on:** October 20, 2015, 09:06:12 pm »

Greetings,

Everything is still going well. Got my 16 week blood work and only problem is the RBC (3.64) and the Hemoglobin (11.6). Still slightly lower than the lower limits, but the rate of decline from prior test is decreasing. Bilirubin is back within normal range.

Ribavirin is definitely kicking butt. Tired, weak and somewhat emotional. I think I found the cause of my anxiety. I stopped taking diphenhydramine, loratadine and any other antihistamines and it has gotten manageable....not gone, but now very slight. I tried several different brands and they all amplify the anxious feelings.

Sleeping about 10 hours a day, but in 2 to 4 hour shifts. 38 more days to go and I can see the finish line. Just chilling and taking it easy, trying to avoid any stressful situations.

Hope everyone on this journey is doing well !!!

KimInTheForest · « **Reply #63 on:** October 20, 2015, 09:22:04 pm »

Quote from: Phoenix on October 20, 2015, 09:06:12 pm

Greetings,

Everything is still going well. Got my 16 week blood work and only problem is the RBC (3.64) and the Hemoglobin (11.6). Still slightly lower than the lower limits, but the rate of decline from prior test is decreasing. Bilirubin is back within normal range.

Ribavirin is definitely kicking butt. Tired, weak and somewhat emotional. I think I found the cause of my anxiety. I stopped taking diphenhydramine, loratadine and any other antihistamines and it has gotten manageable....not gone, but now very slight. I tried several different brands and they all amplify the anxious feelings.

Sleeping about 10 hours a day, but in 2 to 4 hour shifts. 38 more days to go and I can see the finish line. Just chilling and taking it easy, trying to avoid any stressful situations.

Hope everyone on this journey is doing well !!!

Good for you, Phoenix! That was my approach toward the end too, what with the ribavirin and all - chilling, taking it easy, doing my best to avoid stressful situations.

Hang in there! You'll be done before you know it!

kim

Cal · « **Reply #64 on:** October 21, 2015, 03:54:32 am »

Ribas,
Are bitter sweet are they not? Phoenix your bloods are taking a while to bounce back, but I find that oddly assuring that SVR is in the equation there too. Sorry the ribas are so mean. Funny too how they make you teary. The gift that keeps on giving. You are doing great. Cal

Phoenix · « **Reply #65 on:** October 21, 2015, 09:21:08 pm »

Thanks Kim,

I hope you are doing well. One thing I notice now is how each dose starts to hit you harder and harder. It wasn't like that in the beginning. It's starting to feel like a marathon, where each 1/4 mile gets tougher. Might be crawling across the finish line.

All worth it in the end! Almost there!

Phoenix · « **Reply #66 on:** October 21, 2015, 09:32:48 pm »

Thanks Cal.

I hope you are doing well. Yes, I know it's affecting me when your Avatar makes me sad. I think the anxiety was also adding to the emotional instability. Can't wait for 36 days and a wake-up to pass.

All worth it! Thanks for your support.

lporterrn · « **Reply #67 on:** October 22, 2015, 06:26:24 pm »

The FDA just posted a warning about Viekira Pak and Technivie: http://www.fda.gov/Drugs/DrugSafety/ucm468634.htm

Cal · « **Reply #68 on:** October 24, 2015, 12:18:19 am »

Phoenix,
I count the days too, here I am on week 10 of maybe 12 maybe another month after that. I'll know in 2 weeks. Yeah it ain't easy my love. I spend a lot of time resting. A LOT. I don't thin the mental effects are talked about a lot, but I have found the whole anxiety thing very challenging. We can do it.

Dory "Keep on swimming, keep on swimming". Cal

Phoenix · « **Reply #69 on:** November 12, 2015, 12:00:32 am »

Hope everyone's treatment is going well. Got back my 20 week labs and everything is looking good. Still anemic but my RBC and Hemoglobin have improved slightly. I've lost the anxiety, but still dealing with the insomnia. Taking Temazepam sleep aid (no Benadryl) to get to EOT.

152 down / 16 days to go. I can tell that the treatment has worked and that my liver is now doing much better. I'm so ready for this to be over and get on with living. Still only able to function at 20 to 30% of normal. Hardest part is pacing myself to wait till EOT to get back to living. Meanwhile, I’m lining up the projects.

One positive side effect of the treatment is a bit odd. Over the years, both thru work and play, I’ve damaged a lot of finger and toe nails. Some so badly, the nails were permanently deformed. Couple of days ago I noticed the tip of my thumbnail getting weak and soft. When I looked closer, the cause was a 30 year nail imperfection had grown out to the edge, almost gone and replaced. Checked the other 19 & they look like baby nails, pink and perfect. Hope that’s how everyone’s liver looks after treatment!

Hang in there!

Cal · « **Reply #70 on:** November 12, 2015, 12:46:55 am »

Phoenix,
What great news 20 weeks labs all good

You're almost there. Great that RBC and Hemoglobin are improving. and that anxiety has gone (YES!!) Insomnia being controlled with Temaz is good.

So you're still struggling a bit? In what way? I am unable to do most tings these days. I feel disabled. My brain won't even let me read a book. I am hoping the ribas going (tonight) will improve that.

The finger and toenail thing, is the same for me, I have ones that have fallen off during tx as well as before. I have always had those ridges on the nail too.

It's funny noticing little things that we've put up with or lived with and now discovering they were HCV related. It really has had a huge impact on our bodies.

Doing great Phoenix. Cal

Phoenix · « **Reply #71 on:** November 12, 2015, 02:36:53 pm »

Thanks Cal.

Appreciate this forum and especially your support.

I'm having similar issues that you describe. The main issue is lack of energy. Just not able to focus long enough to read, enjoy a movie, go shopping, etc. Feels like my brain can't handle the stimuli. I know it's treatment related because I feel fine 1st thing in the morning. If I have something I want to bust out, I'll delay the morning dose for a couple of hours.

Secondary is the lack of sleep. This leads to difficulty dealing with normal activities and becoming emotional for no good reason. My pattern now is to fall asleep normally, which produces 2-3 hours of rest. Once I wake up in the wee hours of the nite, I'll take the Temaz and get another 4 or so hours. This seems to work best for me. Also, I have the freedom to nap whenever I want.

I'm fortunate that I work from home and can control my day. I feel for people that are dealing with stressful jobs and/or raising families. If Ribavirin is involved, you will need to modify your lifestyle. Give up what you can, reduce the stress and setup your support system. Ribavirin means the situation is serious and it will get your full attention.

For myself, this treatment is a choice between life and death. I was at a point where I felt my body and brain starting to shut down, facing the reality of giving it all up. I was ignorant to the many ways this virus was affecting my health.

Now I feel the life/health beginning to flow back into me. Life is the better alternative and I'm grateful for the 2nd chance. My priorities have changed.

May the wind be at your back.

Cal · « **Reply #72 on:** November 12, 2015, 08:20:02 pm »

Hi Phoenix,
My first tx was like this too because of the ribas. I lost concentration and focus. Just layed down all day, no strength or energy. I stayed close to home. Which pretty much explains this tx for me too! I also can't handle too much stress. I barely manage to run the house.

Yep it's the ribas. The sooner they go the better. You are getting there my love. SO close now.

Lack of sleep is just torture as we know. But it sounds like you've got it worked out with the Temaz.

My body has been shutting down for years, I just couldn't beat the virus. I don't think that anyone really knows the extent f the damage the virus is doing and has done. It's all new ground. I'm a life and deather too, it has given me cardio myopathy. I need to clear to stop from having a heart attack. It's that simple. My liver is not too bad, it's the co morbidities which have disabled me.

I can't feel the new flow yet. I glimpse it, but the ribas seem to over shadow it. I'll catch up to you eventually. I am so pleased for you though that you feel the second chance coming into fruition. It's a gift. Cal

Phoenix · « **Reply #73 on:** November 27, 2015, 08:23:18 pm »

Final Dose

Greeting to all on the road to recovery. Most thankful that today is my last day on this treatment. On reflecting back over the past 24 weeks, I offer the following observations, based on my personal experience;

1>   The treatment was neither easy, nor difficult. The hardest part was the Riba anemia that kicked in midway thru. All other side effects were minor. Most arose and then faded away. Once they started, the Riba anemia side effects seemed to steadily increase for about 8 weeks, then sort of leveled off.

2>   Lack of sleep was my biggest problem. Not enough sleep led to various mental and physical conditions that were not related to the treatment. I tried to nap whenever I could. Tried to reduce the stress in my life to a minimum. When interacting with the world, did it in small doses and realized the lack of sleep was affecting my judgement and reaction to various stimuli.

3>   Used a sleep aid to help get the rest I needed. I used temazepam to help get thru the night. I would go to sleep normally and wake up after 2 or 3 hours. At that point I would take the minimum dose and manage to get another 3 to 4 hours of rest with no hangover issues.

4>   Learned I don’t need coffee or other stimulants to make it thru the day. I don’t need antacids or antihistamines to feel comfortable. In fact, I found Benadryl and other similar products to be the major source of my feelings of anxiety during treatment.

5>   Researched diets recommended for people with liver problems. Best advice I found was the BRAT diet, which I tried to follow. Turns out what’s good for liver health also helps your heart. I did eliminate milk and dairy products about a year ago, as they were giving me a severe rash at that time. I’ve also been on a total gluten free diet for the past 10 years.

6>   Blood work results can be a source of elation as well as anxiety. It did help me when I was feeling the weakest, to see that my RBC counts were still close to normal, just at the low end of the scale. That info gave me the resolve to press on. Also liked seeing the virus “undetected”.

7>   If you can, start the treatment sooner rather than later. I lived with the condition for about 35 years and I was ignorant to the many ways it has affected my life. The sooner you eliminate the virus the better you will think and feel. By starting early, you should be able to eliminate the need for Ribavirin. You may also escape the Prometheus effect: Each day my liver was being pecked out by this virus. Finally, I could no longer regenerate the damaged liver overnight. Kill this virus and your liver will regenerate itself. The sooner you take action, the easier it will be.

I’ve submitted my last blood draw earlier this week. I will meet with the pharmacologist next week to get the EOT results and go thru the debriefing process. I will see everyone on the “Post Treatment” side of this forum. I am most thankful for this Great Site, as well as all the other HEP C related info available online. May your side fx’s be minimal and your treatment time go quickly! May the positive results allow you to live a long and happy life! Most grateful for a second chance to live a normal life.

KimInTheForest · « **Reply #74 on:** November 27, 2015, 08:31:29 pm »

CONGRATULATIONS PHOENIX !!!

It's been a long haul for you at 24 weeks. But you made it. And undetected. Really excellent observations and advice you have posted about your treatment. The riba anemia was my biggest challenge too on treatment.

Enjoy your New Life

kim

slats1056 · « **Reply #75 on:** November 27, 2015, 09:37:00 pm »

Yippee Kai Yay

You go Cowgirl

. Couldn't happen to a more deserving person. Keep up the good work and Many Happy New Beginnings to You. I am truly happy for You.
Today is the first day of the rest of Your life!

Cal · « **Reply #76 on:** November 27, 2015, 09:43:46 pm »

Phoenix,

Big Bloody well deserved Congratulations my friend!

You said it well. Ribas have been the crap part of my tx too. We al thought it was ifn, but it was ribas just as bad. I'm doing 17 weeks now on Viekira, but finished ribas over 2 weeks ago and have already gone into post riba tx. It's a wicked drug, but we have to embrace it. Bitter sweet.

Good on you gal, you made it! Pat on the back time. here's my virtual pat on your back from Australia.

Cal

Philadelphia · « **Reply #77 on:** November 28, 2015, 07:07:46 am »

Congrats on finishing Phoenix! I know only too well how long 24 weeks is. But you've done it and now you have all the time in the world for healing. Looking forward to seeing your post Tx results.

Phoenix · « **Reply #78 on:** November 30, 2015, 11:41:16 pm »

Thanks Philadelphia - Hope all is going well for you! That Riba is tough to take. I was ready to give up after 12 weeks. Don't know how I made it 24. Mentally draining. Still feeling the effects of it.

Thanks Cal. Coolest people in the world are from Down Under! Good luck with your journey. I'm pulling for you!

Thanks slats1056. Appreciate your kind thoughts and words! All the best!

Kim. Thanks for your support during this difficult time in my life. I appreciate it. Hope everything is going well for you in the Post Treatment world!

Cal · « **Reply #79 on:** December 01, 2015, 05:56:06 pm »

Thanks Phoenix, it's been a pleasure and an honour to tx alongside you. Cal

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