Good to hear from you again. I don't know what type of system they use to measure ALT levels there ....but my ALT level went from 114 to 48IU/L in the first couple of weeks of tx. Couple of weeks ago they were 21 IU/L . Normal levels from the lab I go to are 10-60 IU/L.
"grins" @ two jam donuts or a Snickers Bar does the trick.
I lost about 15 to 20 lbs my 12 weeks of Incivek and I got my fat. I didn't always feel like eating and food didn't taste that good.
My whole diet changed from how usually have it with my Diabetes but my BS stayed low so didn't worry about it. Was only 12 weeks. Its them carbs that get you on Diabetes and of course the lack of exercise etc. not that you can't eat too much sugar and junk food.
I think you'll do fine on tx. You have a good attitude.
Hi Jerry - thanks - I don't understand all the medical levels seems to me people get measured is so many different ways - I have Spanish friends in Spain and I can't understand any of their results. As long as my Dr is happy than that's all that matters
You say you lost all that weight - every time I get weighed at the hospital I seem to have put on another Kilo, 2 1/2 lbs and laughed with the nurse that by the end of 48 weeks that will be 48 kilos extra but she said I should loose it again with out too much trouble - We will see
Yesterday I had friends for lunch in the garden - I cooked up a Smoked bacon, leek and roast garlic quiche with salad and sauté potatoes and fresh chives followed by Vanilla Panna Cotta with fresh raspberries sauce with raspberries on the side - I treated myself to a couple of glasses of sparkling rose cava - we sat out for 6 hours - bliss
It's the most fantastic day here in southern UK and I think I'll take a stroll down by the river in an hour after I've taken my 9am tablets
Catch you soon
LLoydavid said
Jun 3, 2013
Kellie wrote:
Hi LLoyd, Greetings from San Diego. How is the double dosing of the teleprevir working for you? Happy June to you!
Hi Kelly - It's going really well - I just don't think about - 3/4 of a pint of milk and a Snickers Bar - and staying positive 24/7
and a happy June to you too and the rest of your life
LLoydavid said
Jun 3, 2013
JIme wrote:
Hey LLoyd, A big hello from NJ over on the west side of the pond.
Summer got here with a bang this week and we are loving the warm weather. Hope it's getting nice for you guys too!
Keep moving forward and you will be fine.
Good luck!
Hi Yes the summer has at last arrived here and I'm just loving my small garden with all it's clouds of colour this time of year - plus all the roses are about to explode and create total harmony - Thanks for encouragement - hope all is well with you too
LLoydavid said
Jun 3, 2013
Cinnamon Girl wrote:
Hi Lloyd, good to hear you`re doing so well, with no side effects! Great news that you`re able to take your Incivo dose twice daily now, that must make life much easier. The new dosing regime has recently been approved by the European Commission, I was reading about it earlier..
Your ALT count is very good! It`s unlikely to reach zero but the main thing is that it`s gone down nicely which is a good sign and what you want to see.
Best of luck with your 4 week viral load test! ~ Jill
Hi Jill - Thanks for comments - it's great to be reassured I'm doing well - I love the double dose and it fits my day so much better - Energy levels are still very high and had friends for lunch in the garden yesterday - great day - off for a long walk in a minute LLoyd
Dillo said
Jun 2, 2013
Hey LLoyd
Good to hear from you again. I don't know what type of system they use to measure ALT levels there ....but my ALT level went from 114 to 48IU/L in the first couple of weeks of tx. Couple of weeks ago they were 21 IU/L . Normal levels from the lab I go to are 10-60 IU/L.
"grins" @ two jam donuts or a Snickers Bar does the trick.
I lost about 15 to 20 lbs my 12 weeks of Incivek and I got my fat. I didn't always feel like eating and food didn't taste that good.
My whole diet changed from how usually have it with my Diabetes but my BS stayed low so didn't worry about it. Was only 12 weeks. Its them carbs that get you on Diabetes and of course the lack of exercise etc. not that you can't eat too much sugar and junk food.
I think you'll do fine on tx. You have a good attitude.
Kellie said
Jun 1, 2013
Hi LLoyd, Greetings from San Diego. How is the double dosing of the teleprevir working for you? Happy June to you!
JIme said
Jun 1, 2013
Hey LLoyd, A big hello from NJ over on the west side of the pond.
Summer got here with a bang this week and we are loving the warm weather. Hope it's getting nice for you guys too!
Keep moving forward and you will be fine.
Good luck!
LLoydavid said
Jun 1, 2013
Dillo wrote:
LLoyd,
Glad to see your beginning. If an old man like me with Diabetes 2...A heart condition (14 heart stents) and generally not in that good a shape can get though the treatment I'm sure you can.
I have never heard of the Fresubin 5 Kal shots. The one I saw on the internet had 16 gms of fat. My advice would be to find foods that can fill your needs and not get too fancy with oils and drinks. The 20gms of fat before taking the Incivek is not hard to get (not always that healthy lol but it's only 12 weeks). There is a thread here with everyone's favorite foods to get it.
Getting that is important to help your Incivo dissolve so it works and a minor amount of stomach and gastro problems. You still might have some but they should mostly be minor....drinking plenty of water....and keeping your skin moisturized (keeps down the itching) should keep your sx to a min.
Those were the three things that helped me. I have 10 weeks left of just the Pegasys and Riba. Yea I am tired and don't have the energy I would like too and of course I itch lol ....but that's par for the course.
Your going make it man I know you are.
-- Edited by Dillo on Friday 17th of May 2013 08:19:16 PM
Hi There - thanks so much for your message - sorry I have not been on here recently
Just to update you and this may sound naïve from a beginner but I now had three weeks of injections and my ALT count dropped from 329 to 87 in my first week and this week it is 27 - hopefully I can get it down to Zero by the end of first four weeks
So far I've not had any side effects and my energy levels are very high but the best news I've had is that my Doctor has said that I can now take the Incivo (3 Tablets) Twice daily so now I'm taking at 09.00 and 21.00 instead of 07.00 - 15.00 - 23.00 hours and I'm so much happier with that
As for the Fresubin 5 Kal shots they were so cloying and the taste was so awful that I wanted to throw up just opening the bottle so I have stopped using it - two jam donuts or a Snickers Bar does the trick
I have a wonderful hour and a Quarter video which follows my own belief system here is the link if it helps anyone - does me
All the very best with your last few weeks, I'm sure you will be fine
Cheers LLoyd
Cinnamon Girl said
Jun 1, 2013
Hi Lloyd, good to hear you`re doing so well, with no side effects! Great news that you`re able to take your Incivo dose twice daily now, that must make life much easier. The new dosing regime has recently been approved by the European Commission, I was reading about it earlier..
Your ALT count is very good! It`s unlikely to reach zero but the main thing is that it`s gone down nicely which is a good sign and what you want to see.
Best of luck with your 4 week viral load test! ~ Jill
LLoydavid said
May 17, 2013
JoAnneh wrote:
Welcome to the Hep C forum group! The forum has given me so much encouragement And lots of suggestions for treating symptoms. I finished 48 weeks w Invicek a month ago. Bless wishes to you!
Hi JoAnne
Many thanks for welcome and advice - There are some remarkable people on here and some great suggestions - Congrats with finishing you48 weeks - I assume you are clear now?
Warm regards
LLoyd
JoAnneh said
May 17, 2013
Welcome to the Hep C forum group! The forum has given me so much encouragement And lots of suggestions for treating symptoms. I finished 48 weeks w Invicek a month ago. Bless wishes to you!
LLoydavid said
May 17, 2013
mallani wrote:
Hi Lloyd,
Welcome to Rx and hope you get through the Incivek without too much trouble. After that it's a breeze according to our Incivek members. Don't read too much- there's a lot of distressing stuff out there. If I can get an Undet. at EOT + 12w ( an old cirrhotic), you should walk it in. Keep up your water intake during the hot Hampshire summer. Cheers.
Hi Malcolm - Thanks for encouragement - Yes, I stopped the reading and just getting on with what needs to be done day by day - I expect time will fly - it has for the last 63 years ( I was 36 just the other day ) I have a pint of water with wherever I am in the house and don't have a challenge knocking it back - Oh the garden is so lush with every shade of green currently and the Wisteria is just about to flower on the pergola all down one side of the garden so I'll be sitting under a blue Cloud
Cheers LLoyd
Dillo said
May 17, 2013
LLoyd,
Glad to see your beginning. If an old man like me with Diabetes 2...A heart condition (14 heart stents) and generally not in that good a shape can get though the treatment I'm sure you can.
I have never heard of the Fresubin 5 Kal shots. The one I saw on the internet had 16 gms of fat. My advice would be to find foods that can fill your needs and not get too fancy with oils and drinks. The 20gms of fat before taking the Incivek is not hard to get (not always that healthy lol but it's only 12 weeks). There is a thread here with everyone's favorite foods to get it.
Getting that is important to help your Incivo dissolve so it works and a minor amount of stomach and gastro problems. You still might have some but they should mostly be minor....drinking plenty of water....and keeping your skin moisturized (keeps down the itching) should keep your sx to a min.
Those were the three things that helped me. I have 10 weeks left of just the Pegasys and Riba. Yea I am tired and don't have the energy I would like too and of course I itch lol ....but that's par for the course.
Your going make it man I know you are.
-- Edited by Dillo on Friday 17th of May 2013 08:19:16 PM
mallani said
May 17, 2013
Hi Lloyd,
Welcome to Rx and hope you get through the Incivek without too much trouble. After that it's a breeze according to our Incivek members. Don't read too much- there's a lot of distressing stuff out there. If I can get an Undet. at EOT + 12w ( an old cirrhotic), you should walk it in. Keep up your water intake during the hot Hampshire summer. Cheers.
LLoydavid said
May 17, 2013
ucbgal wrote:
welcome lloyd,
i'm new here as well and have received so much advice already! i will be a month behind you,i start on 6/15. i wish you an easy beginning on treatment and look forward to hearing about your tolerance. i highly suggest you go back to your dr. regarding that pain or call the incivek support group. will that pain make you more vulnerable to side effects? i think your dr. should answer that ? before you start.
thanks to this support group and mallani's advice i'm starting my treatment on the 15th, not the 1st for i want my dental implants fully healed. take care,stay hydrated,eat healthy and be strong.
sandy,ucbgal
Hi Sandy - sorry for late reply but decided that the more I read - the more worried I got so left the forum alone - I started on Tuesday and Opted to do the injection myself in front of nurse as I thought that I'm going to have to do it anyway - I was surprised I didn't feel a thing
I've not yet had any side effects from the injection and hope this is an on going trend. I started the tablets at 11pm Tuesday night and did wake at 2.30 am with nausea but drank some water and went back to sleep - I have felt very well most of the time with the background feeling of very slight nausea
I found on one of the leaflets the hospital gave me something called Fresubin 5 Kal shots - 40ml provides 20 grams of fat - they can only be had on Prescription (in the UK) - I thought this was a great way to deal with taking fat when taking the tablets - in a way it is but although it's "lemon" in flavour they are a little cloying and the taste seems to remain - google it if interested
I did mention the pain to the Dr who said that some people do get some pain with for no good reason but I'm happy to say that since starting treatment it seems to have gone
So all in all I'm feeling great - and only hope it stays this way but I'm very aware that it is early days and will have to see how I go when the weeks pass
All the very best with your start and hope you have a good time ahead
LLoyd
ucbgal said
May 8, 2013
welcome lloyd,
i'm new here as well and have received so much advice already! i will be a month behind you,i start on 6/15. i wish you an easy beginning on treatment and look forward to hearing about your tolerance. i highly suggest you go back to your dr. regarding that pain or call the incivek support group. will that pain make you more vulnerable to side effects? i think your dr. should answer that ? before you start.
thanks to this support group and mallani's advice i'm starting my treatment on the 15th, not the 1st for i want my dental implants fully healed. take care,stay hydrated,eat healthy and be strong.
sandy,ucbgal
LLoydavid said
May 6, 2013
Hi Greg - just caught me before I close down and go to my bed - Many thanks for your good wishes -I've read so much stuff on here in the last 24 hrs that is makes me think my Dr and nurse have just been hiding everything from me and shrug off my questions with "Not everyone reacts like that" - I'm sure they don't but boy there are a lot of great people out there going through so really nasty stuff - Oh boy - stay positive - off to bed - once again thanks - good night - LLoyd
Greg said
May 6, 2013
Hi Lloyd,
A big warm welcome from the me mate, hope you sail through treatment and wish you all the very best.
Cheers,
Greg
LLoydavid said
May 6, 2013
Dillo wrote:
Welcome LLoyd,
I am on the Taleprevir tx like you are beginning. I just completed my 12th week and am now just on Pegasys and Riba.
I won't sugar coat it cause it has it's hard times and I won't talk about side effects much cause it effects everyone diffferent.
I think most of the side effect preventions have been covered.
If your like most of us you will mess up and not always get the 20 gms fat, get a rash, forget a dose or or to drink enough water. Pick ourself back up and carry on.
This is a great forum to learn about all of it so read and just keep trying, you'll make it.
Be sure to let us know how it goes.
Hello Dillo thanks for the post - I'll do my best not to mess up and I'm grateful for your reminder of things I could - I'm going to do my very best
Sure will let you know - you keep me informed too
LLoydavid said
May 6, 2013
Whoops sorry Mallani - I miss read your post - and I should have congratulated you on clearing 11 weeks ago and not reply as I did - Pardon me !
Dillo said
May 5, 2013
Welcome LLoyd,
I am on the Taleprevir tx like you are beginning. I just completed my 12th week and am now just on Pegasys and Riba.
I won't sugar coat it cause it has it's hard times and I won't talk about side effects much cause it effects everyone diffferent.
I think most of the side effect preventions have been covered.
If your like most of us you will mess up and not always get the 20 gms fat, get a rash, forget a dose or or to drink enough water. Pick ourself back up and carry on.
This is a great forum to learn about all of it so read and just keep trying, you'll make it.
Be sure to let us know how it goes.
LLoydavid said
May 5, 2013
Cinnamon Girl wrote:
Hi again, Lloyd, actually I live in West Sussex, not far from you. It`s wonderful to see our gardens coming back to life at last!
The reason you`ll come across references to `incivek` rather than `incivo` here, is that it was approved in the US by the FDA 2 years ago, along with victrelis (boceprvir). These are the triple therapy drugs, which are both used with peginterferon and ribavirin for the treatment of genotype 1`s. The 2 new drugs were only approved by NICE for use within the NHS just over a year ago, and the uptake has been quite slow so far. And the funding issue is causing delays for some people. That`s the reason why the majority of our members doing the triple therapy so far are from America.
It`s good to have your onboard, you`ll soon be feeling at home here!
Hi Jill - in a way I've been lucky as Doctors wanted me to start 4 years ago but as I'm a carer the timing was never correct and now NICE have released new meds I've a much better chance of clearance then earlier treatments - timing is never good but hey ho, just have to jump in as at 63 I've a lot I still want to do - so docs have really pushed me this time
LLoydavid said
May 5, 2013
hepcat60 wrote:
Welcome to the forum. I am on the same treatment. Started in Jan and have cpmpleted the Incivek phase. It was pretty rough. I'm sure you will hear a million times, but drink a lot of water and moisturize daily. Don't be shy about discussing side affects management with you doctor. Stay on top of any rashes that may occur. Be strong and you will do fine. I am presently working full time and am able to manage.
Hi Ya Hepcat - Many thanks - great advice - I very much liked the fact you are able to continue working and coping - I'm lucky in that respect as I work from home via the computer - and I'm hoping to put 100% into that and keep occupied - I wasn't last in the queue in coming forward when talking to Doctors as long as I can get hold of them. Let me know how you proceed - Thanks
Cinnamon Girl said
May 5, 2013
Hi again, Lloyd, actually I live in West Sussex, not far from you. It`s wonderful to see our gardens coming back to life at last!
The reason you`ll come across references to `incivek` rather than `incivo` here, is that it was approved in the US by the FDA 2 years ago, along with victrelis (boceprvir). These are the triple therapy drugs, which are both used with peginterferon and ribavirin for the treatment of genotype 1`s. The 2 new drugs were only approved by NICE for use within the NHS just over a year ago, and the uptake has been quite slow so far. And the funding issue is causing delays for some people. That`s the reason why the majority of our members doing the triple therapy so far are from America.
It`s good to have your onboard, you`ll soon be feeling at home here!
hepcat60 said
May 5, 2013
Welcome to the forum. I am on the same treatment. Started in Jan and have cpmpleted the Incivek phase. It was pretty rough. I'm sure you will hear a million times, but drink a lot of water and moisturize daily. Don't be shy about discussing side affects management with you doctor. Stay on top of any rashes that may occur. Be strong and you will do fine. I am presently working full time and am able to manage.
LLoydavid said
May 5, 2013
marktrux wrote:
Welcome Lloyd. The sides from Incivek triple TX may be many or can be few, it affects everyone differntly so theres no way to tell exatly what it may do to you. The most important things about sides, is to stay on top of them. As soon as you think something is changing, you have to get it under control. Keep in close contact with your Dr. and NP, and let them know of any changes. The forum is a great place to learn what may have helped people who have been through the same Tx. It's not easy but it is do-able and it is worth it.
Great Advice Marktrux - I appreciate the help - I apprehensively positive and move nearer to the day
Not sure I have answered these posts correctly but at least I have - Thanks to all of you - I did need to find a home
LLoydavid said
May 5, 2013
mallani wrote:
Hi and welcome Lloyd.
I hope it's warming up in Hampshire as we'll be over to London in a month, to visit son and grandkids. I finished 48 weeks of the Victrelis (boceprevir) triple 11 weeks ago. It was hard work but the Forum gave me incredible support. Looking at your photo, at least you won't have to worry about one annoying side effect- hair loss! Good luck and Cheers.
Hi Mallani - Hampshire is just perfect at this moment - spring has arrived about 5 weeks late and the world looks green and lush - will be stunning when you get to London - whatever you do in London ENJOY - Just hope my beard doesn't full out hahhaha - I hope your last 11 weeks speed by but with a trip across the pond looming it will
LLoydavid said
May 5, 2013
Biggyb wrote:
Welcome Lloyd, from U.S. here, i am winding down my treatment now. 6 more weeks of 48,,whew.. Stick with us alot of great and knowledgeable people here..
Thanks Biggyb - so please to hear you are near the end - great news
LLoydavid said
May 5, 2013
Cinnamon Girl wrote:
Hi from the UK! Welcome to the forum, Lloyd, you`ve found a good group here! Good luck with starting your triple treatment, have you had to wait long for it?
Have a good look around and do feel free to join in. You`ll notice telaprevir mostly being referred to as `incivek` here on the forum. `Incivo` is the European name, as you probably know. If you type `20g fat` into the `search` box, at the top of the page, you`ll find lots of good suggestions for fatty snacks!
I should see what your nurse has to say about the pain in your right side.
Keep in touch! ~ Jill
Hey Jill - thank you for telling me that "incivek is the same, I didn't know - will talk with nurse - typed 20g fat and found tons I like but by the sounds of it I will not much longer
LLoydavid said
May 5, 2013
dragonfly wrote:
Hi, I live in the Uk as does our moderator. I wish you the best on your treatment. Feel free to contact me as I've done 2 lots and know what it's like. Take care. Nx
Thank you Dragonfly - so many wonderful people on here - I seem to have done so much reading, thought I had better say thanks to everyone
LLoydavid said
May 5, 2013
Zlikster wrote:
Hi LLoyd and welcome this forum is full of compadres who will gladly help and give their support to fellow dragon fighters
i myself ain't on triple, but there are lots of threads and tips regarding how to ease Incivek intake and side effects (just use search button)
can you also give us details on your viral load, ALT/AST. liver inflamation/fibrosis/fibroscan?
cheers
Hi Zlikster - thanks for the welcome - I'll have to post my viral load etc - can you believe it I don't know - but I will find out for sure and post
LLoydavid said
May 5, 2013
Loopy Lisa wrote:
Hi Lloyd,
Welcome tothe forum, there are many people here that have finished treatment, beginning treatment, and others like me waiting for the interferon free treatment plans.
There are quiet a few that are currently on TX so they will be able to advise you.
Good luck with treatment, and I hope it goes well for you.
x
Thanks Lisa - couldn't do the Loopy bit - whoops just did
LLoydavid said
May 5, 2013
Jennifer20 wrote:
Hi there, welcome! I only just joined myself but everyone here is very friendly and helpful, and I really enjoy reading everyone's topics. I have my first appt with a GI on Tuesday.
Hi Jennifer - thanks for your post - so many replies so starting by saying thanks to you - best wishes for Tuesday - let me know how you get on as I'll be a week behind you
marktrux said
May 5, 2013
Welcome Lloyd. The sides from Incivek triple TX may be many or can be few, it affects everyone differntly so theres no way to tell exatly what it may do to you. The most important things about sides, is to stay on top of them. As soon as you think something is changing, you have to get it under control. Keep in close contact with your Dr. and NP, and let them know of any changes. The forum is a great place to learn what may have helped people who have been through the same Tx. It's not easy but it is do-able and it is worth it.
mallani said
May 5, 2013
Hi and welcome Lloyd.
I hope it's warming up in Hampshire as we'll be over to London in a month, to visit son and grandkids. I finished 48 weeks of the Victrelis (boceprevir) triple 11 weeks ago. It was hard work but the Forum gave me incredible support. Looking at your photo, at least you won't have to worry about one annoying side effect- hair loss! Good luck and Cheers.
Biggyb said
May 5, 2013
Welcome Lloyd, from U.S. here, i am winding down my treatment now. 6 more weeks of 48,,whew.. Stick with us alot of great and knowledgeable people here..
dragonfly said
May 4, 2013
Hi, I live in the Uk as does our moderator. I wish you the best on your treatment. Feel free to contact me as I've done 2 lots and know what it's like. Take care. Nx
Zlikster said
May 4, 2013
Hi LLoyd and welcome this forum is full of compadres who will gladly help and give their support to fellow dragon fighters
i myself ain't on triple, but there are lots of threads and tips regarding how to ease Incivek intake and side effects (just use search button)
can you also give us details on your viral load, ALT/AST. liver inflamation/fibrosis/fibroscan?
cheers
Loopy Lisa said
May 4, 2013
Hi Lloyd,
Welcome tothe forum, there are many people here that have finished treatment, beginning treatment, and others like me waiting for the interferon free treatment plans.
There are quiet a few that are currently on TX so they will be able to advise you.
Good luck with treatment, and I hope it goes well for you.
x
Jennifer20 said
May 4, 2013
Hi there, welcome! I only just joined myself but everyone here is very friendly and helpful, and I really enjoy reading everyone's topics. I have my first appt with a GI on Tuesday.
LLoydavid said
May 4, 2013
Hi Everyone
My name is LLoyd living in the UK
I have Genotype 1a and start treatment on the 14th May
I'll be on Triple Therapy
Taleprevir (Invico) 2 tablets every 8 hours with fatty food (for 12 weeks)
Ribavirin Tablets 600mg twice daily
Pegalated 180 mcg s/c injection once a week
I'm starting in a very positive mood know you will all be there should I need you for that I give you all thanks in advance
I have some pain currently on my right side and so far I've not been prescribed anything for it - any suggestions or should I wait to speak to the nurse?
Keep you posted - keep up the good work and hope I'll be able to help others along my journey
Warm regards
LLoyd
Cinnamon Girl said
May 4, 2013
Hi from the UK! Welcome to the forum, Lloyd, you`ve found a good group here! Good luck with starting your triple treatment, have you had to wait long for it?
Have a good look around and do feel free to join in. You`ll notice telaprevir mostly being referred to as `incivek` here on the forum. `Incivo` is the European name, as you probably know. If you type `20g fat` into the `search` box, at the top of the page, you`ll find lots of good suggestions for fatty snacks!
I should see what your nurse has to say about the pain in your right side.
Hi Jerry - thanks - I don't understand all the medical levels seems to me people get measured is so many different ways - I have Spanish friends in Spain and I can't understand any of their results. As long as my Dr is happy than that's all that matters
You say you lost all that weight - every time I get weighed at the hospital I seem to have put on another Kilo, 2 1/2 lbs and laughed with the nurse that by the end of 48 weeks that will be 48 kilos extra but she said I should loose it again with out too much trouble - We will see
Yesterday I had friends for lunch in the garden - I cooked up a Smoked bacon, leek and roast garlic quiche with salad and sauté potatoes and fresh chives followed by Vanilla Panna Cotta with fresh raspberries sauce with raspberries on the side - I treated myself to a couple of glasses of sparkling rose cava - we sat out for 6 hours - bliss
It's the most fantastic day here in southern UK and I think I'll take a stroll down by the river in an hour after I've taken my 9am tablets
Catch you soon
Hi Kelly - It's going really well - I just don't think about - 3/4 of a pint of milk and a Snickers Bar - and staying positive 24/7
and a happy June to you too and the rest of your life
Hi Yes the summer has at last arrived here and I'm just loving my small garden with all it's clouds of colour this time of year - plus all the roses are about to explode and create total harmony - Thanks for encouragement - hope all is well with you too
Hi Jill - Thanks for comments - it's great to be reassured I'm doing well - I love the double dose and it fits my day so much better - Energy levels are still very high and had friends for lunch in the garden yesterday - great day - off for a long walk in a minute
LLoyd
Hey LLoyd
Good to hear from you again. I don't know what type of system they use to measure ALT levels there ....but my ALT level went from 114 to 48IU/L in the first couple of weeks of tx. Couple of weeks ago they were 21 IU/L . Normal levels from the lab I go to are 10-60 IU/L.
"grins" @ two jam donuts or a Snickers Bar does the trick.
I lost about 15 to 20 lbs my 12 weeks of Incivek and I got my fat. I didn't always feel like eating and food didn't taste that good.
My whole diet changed from how usually have it with my Diabetes but my BS stayed low so didn't worry about it. Was only 12 weeks. Its them carbs that get you on Diabetes and of course the lack of exercise etc. not that you can't eat too much sugar and junk food.
I think you'll do fine on tx. You have a good attitude.
Hi LLoyd, Greetings from San Diego. How is the double dosing of the teleprevir working for you? Happy June to you!
Hey LLoyd, A big hello from NJ over on the west side of the pond.
Summer got here with a bang this week and we are loving the warm weather. Hope it's getting nice for you guys too!
Keep moving forward and you will be fine.
Good luck!
Hi There - thanks so much for your message - sorry I have not been on here recently
Just to update you and this may sound naïve from a beginner but I now had three weeks of injections and my ALT count dropped from 329 to 87 in my first week and this week it is 27 - hopefully I can get it down to Zero by the end of first four weeks
So far I've not had any side effects and my energy levels are very high but the best news I've had is that my Doctor has said that I can now take the Incivo (3 Tablets) Twice daily so now I'm taking at 09.00 and 21.00 instead of 07.00 - 15.00 - 23.00 hours and I'm so much happier with that
As for the Fresubin 5 Kal shots they were so cloying and the taste was so awful that I wanted to throw up just opening the bottle so I have stopped using it - two jam donuts or a Snickers Bar does the trick
I have a wonderful hour and a Quarter video which follows my own belief system here is the link if it helps anyone - does me
http://thecureismovie.com/bob-proctor-offer/the-cure-full.html
All the very best with your last few weeks, I'm sure you will be fine
Cheers LLoyd
Hi Lloyd, good to hear you`re doing so well, with no side effects! Great news that you`re able to take your Incivo dose twice daily now, that must make life much easier. The new dosing regime has recently been approved by the European Commission, I was reading about it earlier..
Your ALT count is very good! It`s unlikely to reach zero but the main thing is that it`s gone down nicely which is a good sign and what you want to see.
Best of luck with your 4 week viral load test!
~ Jill
Hi JoAnne
Many thanks for welcome and advice - There are some remarkable people on here and some great suggestions - Congrats with finishing you48 weeks - I assume you are clear now?
Warm regards
LLoyd
The forum has given me so much encouragement
And lots of suggestions for treating symptoms.
I finished 48 weeks w Invicek a month ago.
Bless wishes to you!
Hi Malcolm - Thanks for encouragement - Yes, I stopped the reading and just getting on with what needs to be done day by day - I expect time will fly - it has for the last 63 years ( I was 36 just the other day
) I have a pint of water with wherever I am in the house and don't have a challenge knocking it back - Oh the garden is so lush with every shade of green currently and the Wisteria is just about to flower on the pergola all down one side of the garden so I'll be sitting under a blue Cloud 
Cheers LLoyd
LLoyd,
Glad to see your beginning. If an old man like me with Diabetes 2...A heart condition (14 heart stents) and generally not in that good a shape can get though the treatment I'm sure you can.
I have never heard of the Fresubin 5 Kal shots. The one I saw on the internet had 16 gms of fat. My advice would be to find foods that can fill your needs and not get too fancy with oils and drinks. The 20gms of fat before taking the Incivek is not hard to get (not always that healthy lol but it's only 12 weeks). There is a thread here with everyone's favorite foods to get it.
http://hepcfriends.activeboard.com/t51089202/favorite-fatty-helper/
Getting that is important to help your Incivo dissolve so it works and a minor amount of stomach and gastro problems. You still might have some but they should mostly be minor....drinking plenty of water....and keeping your skin moisturized (keeps down the itching) should keep your sx to a min.
Those were the three things that helped me. I have 10 weeks left of just the Pegasys and Riba. Yea I am tired and don't have the energy I would like too and of course I itch lol ....but that's par for the course.
Your going make it man I know you are.
-- Edited by Dillo on Friday 17th of May 2013 08:19:16 PM
Hi Lloyd,
Welcome to Rx and hope you get through the Incivek without too much trouble. After that it's a breeze according to our Incivek members. Don't read too much- there's a lot of distressing stuff out there. If I can get an Undet. at EOT + 12w ( an old cirrhotic), you should walk it in. Keep up your water intake during the hot Hampshire summer. Cheers.
Hi Sandy - sorry for late reply but decided that the more I read - the more worried I got so left the forum alone - I started on Tuesday and Opted to do the injection myself in front of nurse as I thought that I'm going to have to do it anyway - I was surprised I didn't feel a thing
I've not yet had any side effects from the injection and hope this is an on going trend. I started the tablets at 11pm Tuesday night and did wake at 2.30 am with nausea but drank some water and went back to sleep - I have felt very well most of the time with the background feeling of very slight nausea
I found on one of the leaflets the hospital gave me something called Fresubin 5 Kal shots - 40ml provides 20 grams of fat - they can only be had on Prescription (in the UK) - I thought this was a great way to deal with taking fat when taking the tablets - in a way it is but although it's "lemon" in flavour they are a little cloying and the taste seems to remain - google it if interested
I did mention the pain to the Dr who said that some people do get some pain with for no good reason but I'm happy to say that since starting treatment it seems to have gone
So all in all I'm feeling great - and only hope it stays this way but I'm very aware that it is early days and will have to see how I go when the weeks pass
All the very best with your start and hope you have a good time ahead
LLoyd
welcome lloyd,
i'm new here as well and have received so much advice already! i will be a month behind you,i start on 6/15. i wish you an easy beginning on treatment and look forward to hearing about your tolerance. i highly suggest you go back to your dr. regarding that pain or call the incivek support group. will that pain make you more vulnerable to side effects? i think your dr. should answer that ? before you start.
thanks to this support group and mallani's advice i'm starting my treatment on the 15th, not the 1st for i want my dental implants fully healed. take care,stay hydrated,eat healthy and be strong.
sandy,ucbgal
Hi Greg - just caught me before I close down and go to my bed - Many thanks for your good wishes -I've read so much stuff on here in the last 24 hrs that is makes me think my Dr and nurse have just been hiding everything from me and shrug off my questions with "Not everyone reacts like that" - I'm sure they don't but boy there are a lot of great people out there going through so really nasty stuff - Oh boy - stay positive - off to bed - once again thanks - good night - LLoyd
Hi Lloyd,
A big warm welcome from the me mate, hope you sail through treatment and wish you all the very best.
Cheers,
Greg
Hello Dillo thanks for the post - I'll do my best not to mess up and I'm grateful for your reminder of things I could - I'm going to do my very best
Sure will let you know - you keep me informed too
Whoops sorry Mallani - I miss read your post - and I should have congratulated you on clearing 11 weeks ago and not reply as I did - Pardon me !
Welcome LLoyd,
I am on the Taleprevir tx like you are beginning. I just completed my 12th week and am now just on Pegasys and Riba.
I won't sugar coat it cause it has it's hard times and I won't talk about side effects much cause it effects everyone diffferent.
I think most of the side effect preventions have been covered.
If your like most of us you will mess up and not always get the 20 gms fat, get a rash, forget a dose or or to drink enough water. Pick ourself back up and carry on.
This is a great forum to learn about all of it so read and just keep trying, you'll make it.
Be sure to let us know how it goes.
Hi Ya Hepcat - Many thanks - great advice - I very much liked the fact you are able to continue working and coping - I'm lucky in that respect as I work from home via the computer - and I'm hoping to put 100% into that and keep occupied - I wasn't last in the queue in coming forward when talking to Doctors as long as I can get hold of them. Let me know how you proceed - Thanks
Hi again, Lloyd, actually I live in West Sussex, not far from you. It`s wonderful to see our gardens coming back to life at last!
The reason you`ll come across references to `incivek` rather than `incivo` here, is that it was approved in the US by the FDA 2 years ago, along with victrelis (boceprvir). These are the triple therapy drugs, which are both used with peginterferon and ribavirin for the treatment of genotype 1`s. The 2 new drugs were only approved by NICE for use within the NHS just over a year ago, and the uptake has been quite slow so far. And the funding issue is causing delays for some people. That`s the reason why the majority of our members doing the triple therapy so far are from America.
It`s good to have your onboard, you`ll soon be feeling at home here!
Welcome to the forum. I am on the same treatment. Started in Jan and have cpmpleted the Incivek phase. It was pretty rough. I'm sure you will hear a million times, but drink a lot of water and moisturize daily. Don't be shy about discussing side affects management with you doctor. Stay on top of any rashes that may occur. Be strong and you will do fine. I am presently working full time and am able to manage.
Great Advice Marktrux - I appreciate the help - I apprehensively positive and move nearer to the day
Not sure I have answered these posts correctly but at least I have - Thanks to all of you - I did need to find a home
Hi Mallani - Hampshire is just perfect at this moment - spring has arrived about 5 weeks late and the world looks green and lush - will be stunning when you get to London - whatever you do in London ENJOY - Just hope my beard doesn't full out hahhaha - I hope your last 11 weeks speed by but with a trip across the pond looming it will
Thanks Biggyb - so please to hear you are near the end - great news
Hey Jill - thank you for telling me that "incivek is the same, I didn't know - will talk with nurse - typed 20g fat and found tons I like but by the sounds of it I will not much longer
Thank you Dragonfly - so many wonderful people on here - I seem to have done so much reading, thought I had better say thanks to everyone
Hi Zlikster - thanks for the welcome - I'll have to post my viral load etc - can you believe it I don't know - but I will find out for sure and post
Thanks Lisa - couldn't do the Loopy bit - whoops just did
Hi Jennifer - thanks for your post - so many replies so starting by saying thanks to you - best wishes for Tuesday - let me know how you get on as I'll be a week behind you
Welcome Lloyd. The sides from Incivek triple TX may be many or can be few, it affects everyone differntly so theres no way to tell exatly what it may do to you. The most important things about sides, is to stay on top of them. As soon as you think something is changing, you have to get it under control. Keep in close contact with your Dr. and NP, and let them know of any changes. The forum is a great place to learn what may have helped people who have been through the same Tx. It's not easy but it is do-able and it is worth it.
Hi and welcome Lloyd.
I hope it's warming up in Hampshire as we'll be over to London in a month, to visit son and grandkids. I finished 48 weeks of the Victrelis (boceprevir) triple 11 weeks ago. It was hard work but the Forum gave me incredible support. Looking at your photo, at least you won't have to worry about one annoying side effect- hair loss! Good luck and Cheers.
Welcome Lloyd, from U.S. here, i am winding down my treatment now. 6 more weeks of 48,,whew.. Stick with us alot of great and knowledgeable people here..
Hi, I live in the Uk as does our moderator. I wish you the best on your treatment. Feel free to contact me as I've done 2 lots and know what it's like. Take care. Nx
i myself ain't on triple, but there are lots of threads and tips regarding how to ease Incivek intake and side effects (just use search button)
can you also give us details on your viral load, ALT/AST. liver inflamation/fibrosis/fibroscan?
cheers
Hi Lloyd,
Welcome tothe forum, there are many people here that have finished treatment, beginning treatment, and others like me waiting for the interferon free treatment plans.
There are quiet a few that are currently on TX so they will be able to advise you.
Good luck with treatment, and I hope it goes well for you.
x
Hi Everyone
My name is LLoyd living in the UK
I have Genotype 1a and start treatment on the 14th May
I'll be on Triple Therapy
Taleprevir (Invico) 2 tablets every 8 hours with fatty food (for 12 weeks)
Ribavirin Tablets 600mg twice daily
Pegalated 180 mcg s/c injection once a week
I'm starting in a very positive mood know you will all be there should I need you for that I give you all thanks in advance
I have some pain currently on my right side and so far I've not been prescribed anything for it - any suggestions or should I wait to speak to the nurse?
Keep you posted - keep up the good work and hope I'll be able to help others along my journey
Warm regards
LLoyd
Hi from the UK! Welcome to the forum, Lloyd, you`ve found a good group here! Good luck with starting your triple treatment, have you had to wait long for it?
Have a good look around and do feel free to join in. You`ll notice telaprevir mostly being referred to as `incivek` here on the forum. `Incivo` is the European name, as you probably know. If you type `20g fat` into the `search` box, at the top of the page, you`ll find lots of good suggestions for fatty snacks!
I should see what your nurse has to say about the pain in your right side.
Keep in touch!
~ Jill