OMG I am trying to figure out if I am posting in the right place to the right person so the post is attached properly. Too funny. I will figure it out. I am going to move on to the General Population now. Oh no, it sounds like I am getting out of solitary. I guess I kind of do feel this way with starting treatment. LOL
-- Edited by Jeanno on Friday 3rd of October 2014 07:52:53 PM
Dzdayscomin said
Oct 3, 2014
Jeanno wrote:
Hi Matt Chris,
Good to online meet you. I have BCBS PPO. It was a topsy turvy time. I believe it was after the 2nd appeal that I was approved for not what my medical team asked for which was by the guidelines - Sovaldi and ribvarin- but they did not include Interferon. My specialist has always contended that Interferon was a no win for me. I trust them. The first request for approval was denied unless they included interferon. They submitted a second based on same treatment. This is where it gets crazy. You can go to my blog and read this post which tells about the approval at http://extremehealthwarrior.blogspot.com/2014/09/god-takes-my-breathe-awayi-have-been.html. It has been crazy.
Thank you for kind words and we are in exciting times.. finally.
God Bless and Namaste my new friend.
I have the same insurance and I'm betting you have express scripts for drug coverage, my process to get the very same tx was exactly as yours, you indeed have a diligent care team to make it happen.
Now that you have it you will find it is really a very easy tx...in comparison to others, and the best part is it works very well.
It's of course your choice but I found it was best to take it 1st thing in the morning with a carnation instant breakfast until I got to work and than had something like an english muffin with peanutbutter for some substance....the reason for doing it this way was i was always tired in the morning anyway so it just kind of seemed like a regular part of waking up, and it does have some insomnia effects (i thought) so taking it earlier in the day was a way I thought it would have less of an effect in that manner......and the other good thing about it was my regimine worked to get me to SVR. ...so whether or not that made a difference is not for sure but success of one means it'll at least work doing it that way.......another thing is although I'm not a big coffee drinker I did notice some effect of feeling better on the days I tried that.....but it flies in the face of the insomnia...Gatorman I believed drank a lot of coffee during his tx of the same drugs and he felt it h ad many good effects.....or was t hat Fireman Rob?either way they'll correct me.
I'm really happy you got this tx, I'm about as confident as a guy can be that you will be SVR by Mothers Day!
Thank you for post last night. It is all working out. My body is adapting and just realized that I am just tired from more than HCV so it is all good. Seem to have increased liver and right kidney pain, so I will keep an eye on this. But, overall I think it is going well. Won't complain.
God Bless and Namaste
Jeanno said
Oct 3, 2014
Hi Matt Chris,
Good to online meet you. I have BCBS PPO. It was a topsy turvy time. I believe it was after the 2nd appeal that I was approved for not what my medical team asked for which was by the guidelines - Sovaldi and ribvarin- but they did not include Interferon. My specialist has always contended that Interferon was a no win for me. I trust them. The first request for approval was denied unless they included interferon. They submitted a second based on same treatment. This is where it gets crazy. You can go to my blog and read this post which tells about the approval at http://extremehealthwarrior.blogspot.com/2014/09/god-takes-my-breathe-awayi-have-been.html. It has been crazy.
Thank you for kind words and we are in exciting times.. finally.
God Bless and Namaste my new friend.
Matt Chris said
Oct 3, 2014
Hello Sherry
Welcome to the forum from me as well, you have found a good place with caring people that have great insights in all things HCV.
Wow! three appeals and you won, way to stick with it. You have a good medical team working for you. If I may ask what insurance company do you have?
matt
skewedButNotBroken said
Oct 2, 2014
Hi Sherry,
I'm on the S/O protocol too. The first week was the worse for me--so far. Once you get past that it starts to get better. Hang in there your body is going through a massive kill-off of the virus and it is only natural to feel strange during this phase. Just remember -- this too shall pass.
-- Edited by skewedButNotBroken on Friday 3rd of October 2014 03:20:44 AM
Dzdayscomin said
Oct 2, 2014
I like your sig.......that in itself is a big positive.
Prayers your way for peace, comfort, and success!
It goes a lot faster if you keep busy and don't dwell on it too much before you know it you'll be waiting for that SVR test.
Jeanno said
Oct 2, 2014
Okay. I will take a look at all of that. My husband and I were talking and coming into this treatment is on the tailend of a sad year. My husband lost his mother and then his brother suddenly on Labor Day. It has been stressful and I think I was already tired and on edge. We did not want to put off treatment, so I have to just rest, eat well, do some good positive things and find some calm. So, while it is some of med, I think it is just some emotional fatigue.
You all are very kind. Thank you.
Jeanno said
Oct 2, 2014
I am doing 12 weeks and I had a CAT scan which showed no cirrhosis in April. My liver enzymes are only slightly elevated for the first time since my diagnosis. I have not been tested for Q80K mutation. I have my blood work on 10/15 and am optimistic. I have a great team and am just trusting them. I have not had previous treatment as the odds never seemed in my favor until now. They went to bat for me on just doing the Sovaldi/Olysio combo as they said if I was not able to tolerate ribavirin and/or interferon it would make the virus harder to treat. We held out for 3rd appeal and 3 times was the charm.
Tig said
Oct 2, 2014
Hi Sherry,
I'd like to welcome you to the forum! You are among understanding friends and I'm glad you're here. Congrats on starting treatment, the protocol you've been put on is an excellent one and your chances of success are >95%. Those are excellent odds, don't you think? Big YES on that one!!!
The incidence of depression and emotional upset aren't high on your protocol. Hopefully after your body and mind have had an opportunity to adjust to these new medications, your experience with the irritation will diminish. It's a jolt to the system for all of us, regardless of protocol, and issues like this can happen. That doesn't mean it will continue to be a problem for you, but if it is, don't hesitate to bring it to your doctor's attention. You may notice that some of these side effects occur at a specific time of day or following administration of your meds. There are adjustments that can be made in some cases. If you notice it's due to people or circumstances, do your best to separate yourself from the situation til it passes. Some of the previous drugs, like Ribavirin, were well known for causing moodiness and irritation. We call it the Riba rage! Fortunately you're not on that wonderful drug! Since you're just starting treatment, you'll notice several changes. It's best to see how you adjust to things over the next week or two.
If you can share any of your information, it will help us provide the best informed opinions possible. Lab test results, your LFT's, things you see attached to our signature lines all help greatly. I wish you the best and feel you'll do very well on this protocol!
Tig
mallani said
Oct 2, 2014
Hi Jeanno,
Welcome to the Forum. Good luck with treatment.
Are you doing 12 weeks, and have you had an assessment of your liver? Also, are they still testing for the Q80K mutation? Cheers.
Jeanno said
Oct 2, 2014
Thank so much Duane. It is good to find a place to speak with those who know and understand.
Dzdayscomin said
Oct 2, 2014
Welcome Jeanno,
Many here have been thru this tx with much success and unfortunately a few failures, but I think the best you can do is eat well, drink plenty of water, most of the sx have been fatigue and joint and muscle pain, some report light sensitivity.
All in all my experience was pretty non eventful and I went on to attain SVR , if it makes you more hopeful I'm a 1a decompensated cirrhotic that was... in from what i can see much worse shape..so I think you have an excellent chance.
Unlike you day 3 for me was euphoric in that I cou l d feel it working....then it got to the f atigue stage about 2-3 weeks in then got better after that.
Again welcome to the forum and feel free to vent, rant, ask questions or j ust share your story and experience.
Duane
Jeanno said
Oct 2, 2014
I started Sovadi/Olysio combo Tuesday. I am so grateful to start this therapy. I have waited eight years and finally got it after 3rd appeal, so I am very grateful. This is my first treatment. I am genotype 1b with viral load of 3,358,000, slightly elevated liver enzymes and relatively good health except for fatigue, brain fog, memory lapses and inability to concentrate were becoming pretty bad and depression had finally set in. Today, I felt very irritable and emotional, just on day 3. I am trying to stay balanced even in the midst of irritability but it is hard. Any suggestions? I want to do everything I can so it is not so hard on those I love.
You're doing fine !
OMG I am trying to figure out if I am posting in the right place to the right person so the post is attached properly. Too funny. I will figure it out. I am going to move on to the General Population now. Oh no, it sounds like I am getting out of solitary. I guess I kind of do feel this way with starting treatment. LOL
Here is a little humor at http://extremehealthwarrior.blogspot.com/2014/10/pickles-comic-strip-march-30-2014-on.html
-- Edited by Jeanno on Friday 3rd of October 2014 07:52:53 PM
I have the same insurance and I'm betting you have express scripts for drug coverage, my process to get the very same tx was exactly as yours, you indeed have a diligent care team to make it happen.
Now that you have it you will find it is really a very easy tx...in comparison to others, and the best part is it works very well.
It's of course your choice but I found it was best to take it 1st thing in the morning with a carnation instant breakfast until I got to work and than had something like an english muffin with peanutbutter for some substance....the reason for doing it this way was i was always tired in the morning anyway so it just kind of seemed like a regular part of waking up, and it does have some insomnia effects (i thought) so taking it earlier in the day was a way I thought it would have less of an effect in that manner......and the other good thing about it was my regimine worked to get me to SVR. ...so whether or not that made a difference is not for sure but success of one means it'll at least work doing it that way.......another thing is although I'm not a big coffee drinker I did notice some effect of feeling better on the days I tried that.....but it flies in the face of the insomnia...Gatorman I believed drank a lot of coffee during his tx of the same drugs and he felt it h ad many good effects.....or was t hat Fireman Rob?either way they'll correct me.
I'm really happy you got this tx, I'm about as confident as a guy can be that you will be SVR by Mothers Day!
Hi Dzdayscomin,
Thanks for words. This is a good place to be. I agree with not dwelling and keeping busy. I think I have not been doing enough of either. Thank you.
God Bless and Namaste!
Hi skewedButNotBroken,
Thank you for post last night. It is all working out. My body is adapting and just realized that I am just tired from more than HCV so it is all good. Seem to have increased liver and right kidney pain, so I will keep an eye on this. But, overall I think it is going well. Won't complain.
God Bless and Namaste
Hi Matt Chris,
Good to online meet you. I have BCBS PPO. It was a topsy turvy time. I believe it was after the 2nd appeal that I was approved for not what my medical team asked for which was by the guidelines - Sovaldi and ribvarin- but they did not include Interferon. My specialist has always contended that Interferon was a no win for me. I trust them. The first request for approval was denied unless they included interferon. They submitted a second based on same treatment. This is where it gets crazy. You can go to my blog and read this post which tells about the approval at http://extremehealthwarrior.blogspot.com/2014/09/god-takes-my-breathe-awayi-have-been.html. It has been crazy.
Thank you for kind words and we are in exciting times.. finally.
God Bless and Namaste my new friend.
Hello Sherry
Welcome to the forum from me as well, you have found a good place with caring people that have great insights in all things HCV.
Wow! three appeals and you won, way to stick with it. You have a good medical team working for you. If I may ask what insurance company do you have?
matt
Hi Sherry,
I'm on the S/O protocol too. The first week was the worse for me--so far. Once you get past that it starts to get better. Hang in there your body is going through a massive kill-off of the virus and it is only natural to feel strange during this phase. Just remember -- this too shall pass.
-- Edited by skewedButNotBroken on Friday 3rd of October 2014 03:20:44 AM
I like your sig.......that in itself is a big positive.
Prayers your way for peace, comfort, and success!
It goes a lot faster if you keep busy and don't dwell on it too much before you know it you'll be waiting for that SVR test.
Okay. I will take a look at all of that. My husband and I were talking and coming into this treatment is on the tailend of a sad year. My husband lost his mother and then his brother suddenly on Labor Day. It has been stressful and I think I was already tired and on edge. We did not want to put off treatment, so I have to just rest, eat well, do some good positive things and find some calm. So, while it is some of med, I think it is just some emotional fatigue.
You all are very kind. Thank you.
I am doing 12 weeks and I had a CAT scan which showed no cirrhosis in April. My liver enzymes are only slightly elevated for the first time since my diagnosis. I have not been tested for Q80K mutation. I have my blood work on 10/15 and am optimistic. I have a great team and am just trusting them. I have not had previous treatment as the odds never seemed in my favor until now. They went to bat for me on just doing the Sovaldi/Olysio combo as they said if I was not able to tolerate ribavirin and/or interferon it would make the virus harder to treat. We held out for 3rd appeal and 3 times was the charm.
Hi Sherry,
I'd like to welcome you to the forum! You are among understanding friends and I'm glad you're here. Congrats on starting treatment, the protocol you've been put on is an excellent one and your chances of success are >95%. Those are excellent odds, don't you think? Big YES on that one!!!
The incidence of depression and emotional upset aren't high on your protocol. Hopefully after your body and mind have had an opportunity to adjust to these new medications, your experience with the irritation will diminish. It's a jolt to the system for all of us, regardless of protocol, and issues like this can happen. That doesn't mean it will continue to be a problem for you, but if it is, don't hesitate to bring it to your doctor's attention. You may notice that some of these side effects occur at a specific time of day or following administration of your meds. There are adjustments that can be made in some cases. If you notice it's due to people or circumstances, do your best to separate yourself from the situation til it passes. Some of the previous drugs, like Ribavirin, were well known for causing moodiness and irritation. We call it the Riba rage! Fortunately you're not on that wonderful drug! Since you're just starting treatment, you'll notice several changes. It's best to see how you adjust to things over the next week or two.
If you can share any of your information, it will help us provide the best informed opinions possible. Lab test results, your LFT's, things you see attached to our signature lines all help greatly. I wish you the best and feel you'll do very well on this protocol!
Tig
Hi Jeanno,
Welcome to the Forum. Good luck with treatment.
Are you doing 12 weeks, and have you had an assessment of your liver? Also, are they still testing for the Q80K mutation? Cheers.
Thank so much Duane. It is good to find a place to speak with those who know and understand.
Welcome Jeanno,
Many here have been thru this tx with much success and unfortunately a few failures, but I think the best you can do is eat well, drink plenty of water, most of the sx have been fatigue and joint and muscle pain, some report light sensitivity.
All in all my experience was pretty non eventful and I went on to attain SVR , if it makes you more hopeful I'm a 1a decompensated cirrhotic that was... in from what i can see much worse shape..so I think you have an excellent chance.
Unlike you day 3 for me was euphoric in that I cou l d feel it working....then it got to the f atigue stage about 2-3 weeks in then got better after that.
Again welcome to the forum and feel free to vent, rant, ask questions or j ust share your story and experience.
Duane
I started Sovadi/Olysio combo Tuesday. I am so grateful to start this therapy. I have waited eight years and finally got it after 3rd appeal, so I am very grateful. This is my first treatment. I am genotype 1b with viral load of 3,358,000, slightly elevated liver enzymes and relatively good health except for fatigue, brain fog, memory lapses and inability to concentrate were becoming pretty bad and depression had finally set in. Today, I felt very irritable and emotional, just on day 3. I am trying to stay balanced even in the midst of irritability but it is hard. Any suggestions? I want to do everything I can so it is not so hard on those I love.
Thanks.