mjm wrote:Do they take all of the blood tests again?
I needed the Harvoni, apparently the other, older rx. are not recommended for depressed people like me.
Your doctor may order pre Tx test for a baseline but he may wait until ~4 weeks post SOT to see what effects the Harvoni is having on you. Generally your viral load will be UND or close to it at that point.
My last treatment, last year, the "older rx", Ribavirin sure did cause depression for me. It does to some extent in most cases. This time with Harvoni, at 16 weeks post SOT, I have not experienced any significant depression. And I'm okay even with not taking any medication for my bipolar disorder. You should do fine on Harvoni as far as depression goes.
I'm glad you got your insurance worked out!
Topcat said
Nov 12, 2015
mjm,
i started harvoni 6 days ago and haven't experienced any side effects so far. Took the 1st pill and went to the TCU/ok state football game last weekend. i would jump at the chance to get free if I were you. My insurance wouldn't approve it the first time. Your fortunate.
Good luck. Terry
mjm said
Oct 26, 2015
Thank you for all the replies. I feel so much better. I rec'd the letter yesterday with the approval from Maximus Federal Services, and they 'Overturned Decision of Health Plan' The insurance companies should be ashamed, they are keeping this virus active in the world. I think my Dr. needs to see me before they send the rx? Do they take all of the blood tests again? My viral load is 535,000 IU/mL. I wish I could prove all the stats wrong and tell me all the Milk Thistle, Tumeric and my oils cured me! The reason I needed the Harvoni, apparently the other, older rx. are not recommended for depressed people like me.
Groupergetter said
Oct 22, 2015
Hi mjm, none of us know the long-term affects of these meds. In relative terms they are still new. As others have said, we know the hepC causes other health problems. I would jump on the opportunity to be rid this virus. Glad you're getting started. You'll be rid of the dragon before long. I wouldn't worry about the side effects. Go for it and be thankful you're being treated.
pl1952 said
Oct 22, 2015
Hi MJM -- I was lucky enough to get Harvoni through Gilead's support path -- I received 12 weeks with a F0-1 fibrosis level...I was also lucky enough to fall into the category of having just about no symptoms while on Harvoni, except a few headaches when I didn't keep myself hydrated enough...I ended treatment 5-28-15, reached SVR and can tell you I feel like a new person (although the brain fog is still there just like before -- was hoping that would get better too).
I've had hep C for about 35-40 years and the last 5-6 years the fatigue was debilitating. I could barely pull myself out of bed. No amount of sleep made me feel better and the best way I can describe it is the feeling of having one foot in the grave and just waiting for other to get there. I don't have that feeling today -- I feel like I"m back in the game of life.
The people here will provide endless support and knowledge..Any questions you have once you're on treatment we will be happy to help you here...
coolheat said
Oct 22, 2015
Hi mjm, welcome aboard the harvoni train. The train anyway; to health with others riding the same train. If it were me; I wouldn't hesitate to get treatment now. You should breezes through as your other organs are not thrashed yet. Or at least your organs are not sick yet from the hep c virus attacking them. Congrats on the approval for treatment. Marsha
xtra said
Oct 22, 2015
mjm
I understand your concern. I have friends who received transplants and chemo. Within 15 years, the residual problems show up. With bone marrow transplants and chemo for leukemia, for instance, deep vein thrombosis and diabetis type 1 develops after 10=15 years. However, leukemia was a death sentence and another 20+ years is a blessing, even with the delayed "side effects." (This is anecdotal based on personal observation of a limited number of cases)
So Hep C, to treat or not to treat?
The problem with Hep C, is treatment for anything else is difficult. Antibiotics have to be carefully considered for liver toxicity. Painkillers and tranquilizers are an unnecessary risk. Aspirin and Statins are out.
Alcohol isn't the only thing that will affect your liver. Drugs can damage the liver, even life saving, prescribed drugs. And there is extrahepatic damage to other organs, kidneys and heart.
With Hep C, the longer you have it, the more the problems start multiplying. It is possible to go from F1-F2 to F4 very quickly. There isn't any time table that says X years +Clean Living = F1 or F4
And the risk that a person with Hep C poses to other people, especially medical personnel who may have to operate or deal with quantities of blood, is a consideration.
The drugs have been used long enough that anything such as bone marrow damage or degenerative problems with the pancreas and kidneys would have shown by now.
Treatment is a risk but Hep C is an absolute fact. It is a relentless, chronic, progressive disease.
I am glad you insisted on treatment. Waiting is all most of us could do. I think you have made the right decision.
Good luck with treatment!
-- Edited by xtra on Thursday 22nd of October 2015 04:40:18 PM
-- Edited by xtra on Thursday 22nd of October 2015 04:41:32 PM
-- Edited by xtra on Thursday 22nd of October 2015 04:42:08 PM
Gracie said
Oct 22, 2015
I agree with Jaded-- the harvoni headache (in my opinion) come because of dehydration. When I get one, I notice I haven't been drinking my water. I up it and it helps a lot.
Water ... Rest when tired ... Exercise ... And more water ...
That is my prescription for an easy treatment!
Jaded said
Oct 22, 2015
I don't think you will have any problems at all. You are not at the point yet where you have any issues from Hep C...in fact you were not even aware that you had it. I am starting my last of 24 weeks and except for a few weeks say from 10 to 12...I did experience some fatigue (nothing deadly) but then after upping my hydration I had no side effects at all really and feel better than I have in a long time and I suspect I am older than you and I'm F-4...so i think you will breeze through this. I drink 4 litres of water daily...I can't say that my period of fatigue wouldn't have passed without the increase from 2 to 4 litres just the same...but I will stick with it for at least a week after end of treatment because all my fatigue went away when I did. That period of fatigue was during the hottest part of summer and I was outdoors a few hours everyday so I may have dehydrated at a faster rate and not aware of it. I have kept very active physically as I always have...I think that is crucial always along with good nutrition. 12 weeks is nothing...congratulations on your approval.
Gracie said
Oct 22, 2015
Your actually quite lucky. Most places won't approve a 12 week course of harvoni for an F0-F1. You'd get 8 weeks maximum if no past treatment, and have to be an F2 or higher.
I'm on harvoni and there are symptoms for sure, but not bad, very tolerable. I'd go for it too if I was you.
wmlj1960 said
Oct 21, 2015
Hello mjm.
Since your fibrosis is 0-1, which is minimal liver damage, you should not feel an urgent need to get treated now but since you have been approved it may be best to treat now rather than wait for possible better future medications. Harvoni is proving to be very effective so far and for most individuals the side effects are very minimal. In most cases what side effects you do experience will completely subside over a relatively short time after treatment is completed. If you are like me, I had heard horror stories about permanent health problems being caused by Hep C treatment. But those cases were with the old interferon / ribavirin based protocols and does not apply with the new DAA medications available today such as Harvoni. Odds are certainly in your favor of achieving SVR without any unmanageable side effects which makes treating now an attractive option.
It would be helpful to know more information about your lab test results such as ALT, AST and viral load if you have this information. Feel free to look around the forum and notice the 'Search' function button that can be used to find information on a topic you have questions about which has been discussed in the past. Also you will see user specific information in member signatures and you can also create your own signature if you like. And you'll see several abbreviations in the post and signatures that you may need a definition for. For more on signatures and a link to definitions click here.
Welcome to the forum and make yourself at home. There will be more members along to welcome you also. We have a great bunch of very helpful and knowledgeable members that are glad to help you in any way we can. I wish you well with your treatment and your future Hep C free life!
FYI: Attached is information downloadable in .pdf format about Harvoni.
I was diagnosed last year. On a routine blood test enzymes were elevated. Waited 6 weeks for re-check someone ordered hep-c test by accident! To my surprise - positive? No history with any needles or anything close. I have a fibrosis 0-1. Dr says I can wait, since it is not bad. I do not want any virus destroying my organs, so I insisted on the tx. I was denied twice and appealed. Just got word today I can get 12 weeks of Harvoni. Now I am reading all the side effects and how these last. I do not want to feel worse than I already feel. Do they have any data on what harvoni does to your system? Is it like chemo-maybe a cure but some other organ gets affected?
Your doctor may order pre Tx test for a baseline but he may wait until ~4 weeks post SOT to see what effects the Harvoni is having on you. Generally your viral load will be UND or close to it at that point.
My last treatment, last year, the "older rx", Ribavirin sure did cause depression for me. It does to some extent in most cases. This time with Harvoni, at 16 weeks post SOT, I have not experienced any significant depression. And I'm okay even with not taking any medication for my bipolar disorder. You should do fine on Harvoni as far as depression goes.
I'm glad you got your insurance worked out!
mjm,
i started harvoni 6 days ago and haven't experienced any side effects so far. Took the 1st pill and went to the TCU/ok state football game last weekend. i would jump at the chance to get free if I were you. My insurance wouldn't approve it the first time. Your fortunate.
Good luck. Terry
Hi mjm, none of us know the long-term affects of these meds. In relative terms they are still new. As others have said, we know the hepC causes other health problems. I would jump on the opportunity to be rid this virus. Glad you're getting started. You'll be rid of the dragon before long. I wouldn't worry about the side effects. Go for it and be thankful you're being treated.
Hi MJM -- I was lucky enough to get Harvoni through Gilead's support path -- I received 12 weeks with a F0-1 fibrosis level...I was also lucky enough to fall into the category of having just about no symptoms while on Harvoni, except a few headaches when I didn't keep myself hydrated enough...I ended treatment 5-28-15, reached SVR and can tell you I feel like a new person (although the brain fog is still there just like before -- was hoping that would get better too).
I've had hep C for about 35-40 years and the last 5-6 years the fatigue was debilitating. I could barely pull myself out of bed. No amount of sleep made me feel better and the best way I can describe it is the feeling of having one foot in the grave and just waiting for other to get there. I don't have that feeling today -- I feel like I"m back in the game of life.
The people here will provide endless support and knowledge..Any questions you have once you're on treatment we will be happy to help you here...
Hi mjm, welcome aboard the harvoni train. The train anyway; to health with others riding the same train. If it were me; I wouldn't hesitate to get treatment now. You should breezes through as your other organs are not thrashed yet. Or at least your organs are not sick yet from the hep c virus attacking them. Congrats on the approval for treatment. Marsha
mjm
I understand your concern. I have friends who received transplants and chemo. Within 15 years, the residual problems show up. With bone marrow transplants and chemo for leukemia, for instance, deep vein thrombosis and diabetis type 1 develops after 10=15 years. However, leukemia was a death sentence and another 20+ years is a blessing, even with the delayed "side effects." (This is anecdotal based on personal observation of a limited number of cases)
So Hep C, to treat or not to treat?
The problem with Hep C, is treatment for anything else is difficult. Antibiotics have to be carefully considered for liver toxicity. Painkillers and tranquilizers are an unnecessary risk. Aspirin and Statins are out.
Alcohol isn't the only thing that will affect your liver. Drugs can damage the liver, even life saving, prescribed drugs. And there is extrahepatic damage to other organs, kidneys and heart.
With Hep C, the longer you have it, the more the problems start multiplying. It is possible to go from F1-F2 to F4 very quickly. There isn't any time table that says X years +Clean Living = F1 or F4
And the risk that a person with Hep C poses to other people, especially medical personnel who may have to operate or deal with quantities of blood, is a consideration.
The drugs have been used long enough that anything such as bone marrow damage or degenerative problems with the pancreas and kidneys would have shown by now.
Treatment is a risk but Hep C is an absolute fact. It is a relentless, chronic, progressive disease.
I am glad you insisted on treatment. Waiting is all most of us could do. I think you have made the right decision.
Good luck with treatment!
-- Edited by xtra on Thursday 22nd of October 2015 04:40:18 PM
-- Edited by xtra on Thursday 22nd of October 2015 04:41:32 PM
-- Edited by xtra on Thursday 22nd of October 2015 04:42:08 PM
I agree with Jaded-- the harvoni headache (in my opinion) come because of dehydration. When I get one, I notice I haven't been drinking my water. I up it and it helps a lot.
Water ... Rest when tired ... Exercise ... And more water ...
That is my prescription for an easy treatment!
Your actually quite lucky. Most places won't approve a 12 week course of harvoni for an F0-F1. You'd get 8 weeks maximum if no past treatment, and have to be an F2 or higher.
I'm on harvoni and there are symptoms for sure, but not bad, very tolerable. I'd go for it too if I was you.
Hello mjm.
Since your fibrosis is 0-1, which is minimal liver damage, you should not feel an urgent need to get treated now but since you have been approved it may be best to treat now rather than wait for possible better future medications. Harvoni is proving to be very effective so far and for most individuals the side effects are very minimal. In most cases what side effects you do experience will completely subside over a relatively short time after treatment is completed. If you are like me, I had heard horror stories about permanent health problems being caused by Hep C treatment. But those cases were with the old interferon / ribavirin based protocols and does not apply with the new DAA medications available today such as Harvoni. Odds are certainly in your favor of achieving SVR without any unmanageable side effects which makes treating now an attractive option.
It would be helpful to know more information about your lab test results such as ALT, AST and viral load if you have this information. Feel free to look around the forum and notice the 'Search' function button that can be used to find information on a topic you have questions about which has been discussed in the past. Also you will see user specific information in member signatures and you can also create your own signature if you like. And you'll see several abbreviations in the post and signatures that you may need a definition for. For more on signatures and a link to definitions click here.
Welcome to the forum and make yourself at home. There will be more members along to welcome you also. We have a great bunch of very helpful and knowledgeable members that are glad to help you in any way we can. I wish you well with your treatment and your future Hep C free life!
FYI: Attached is information downloadable in .pdf format about Harvoni.
I was diagnosed last year. On a routine blood test enzymes were elevated. Waited 6 weeks for re-check someone ordered hep-c test by accident! To my surprise - positive? No history with any needles or anything close. I have a fibrosis 0-1. Dr says I can wait, since it is not bad. I do not want any virus destroying my organs, so I insisted on the tx. I was denied twice and appealed. Just got word today I can get 12 weeks of Harvoni. Now I am reading all the side effects and how these last. I do not want to feel worse than I already feel. Do they have any data on what harvoni does to your system? Is it like chemo-maybe a cure but some other organ gets affected?