Aa
Trial Only Option - out of hope
My only option is getting into a trial but I'm having no luck finding one with space.
My test was posted in 2010 but Dr "forgot" to tell me. I've been sick over 3 years and no one knew why. Finally retested and there it was.
Most likely had since birth. Mother had hcv and I had transfusion when born from her. Only found out a month ago. No family history.
I'm so sick with symptoms lost my job due to illness losing my marriage and insurance I just got I can barely afford and they will not pay for any hcv treatment.
My doctor said I have to find a trial or I'm out of luck.
I have no savings left and if I don't get better I can't go back to work to support myself and as dramatic as it sounds I will be homeless and lose what little I have left.
I then will be eligible possibly for medicaid but I've been told medicaid will not pay for meds or okay very little.
Does anyone know of a trial that has openings now anywhere in the US?
Sorry but I am desperate. I can't go on being sick like this. I'd rather no go on than be this sick.
My test was posted in 2010 but Dr "forgot" to tell me. I've been sick over 3 years and no one knew why. Finally retested and there it was.
Most likely had since birth. Mother had hcv and I had transfusion when born from her. Only found out a month ago. No family history.
I'm so sick with symptoms lost my job due to illness losing my marriage and insurance I just got I can barely afford and they will not pay for any hcv treatment.
My doctor said I have to find a trial or I'm out of luck.
I have no savings left and if I don't get better I can't go back to work to support myself and as dramatic as it sounds I will be homeless and lose what little I have left.
I then will be eligible possibly for medicaid but I've been told medicaid will not pay for meds or okay very little.
Does anyone know of a trial that has openings now anywhere in the US?
Sorry but I am desperate. I can't go on being sick like this. I'd rather no go on than be this sick.
Thank you for all that info.
I haven't had the A or B vaccinations. Thought they would do those.
I have called and emailed and gone by for results including just the lab. I just get the impression from what they say that if it's bad the don't release or have MA talk to you they actually wait for Dr.
You are absolutely right I should remember all the folks we have lost and those not having success with treatment.
As long as I've had it and as sick as I feel and in bed days at a time I'm worried it could be me. All the wasted years not knowing what was wrong when the test was there and showed positive really irritates me along with a negligent parent who never told me she had it and I should be tested. She is I think 75 has a damaged liver already from car accident never got HCV treatment and is perfectly fine. Makes no sense to me.
Last night I passed out yet again nausea vomiting and severe sweating after then so sleepy I just went to sleep and slept almost 14 hours. Woke up with same feelings plus increased pain including liver area. So want to try something anything to feel better.
Take care and thank you.
I haven't had the A or B vaccinations. Thought they would do those.
I have called and emailed and gone by for results including just the lab. I just get the impression from what they say that if it's bad the don't release or have MA talk to you they actually wait for Dr.
You are absolutely right I should remember all the folks we have lost and those not having success with treatment.
As long as I've had it and as sick as I feel and in bed days at a time I'm worried it could be me. All the wasted years not knowing what was wrong when the test was there and showed positive really irritates me along with a negligent parent who never told me she had it and I should be tested. She is I think 75 has a damaged liver already from car accident never got HCV treatment and is perfectly fine. Makes no sense to me.
Last night I passed out yet again nausea vomiting and severe sweating after then so sleepy I just went to sleep and slept almost 14 hours. Woke up with same feelings plus increased pain including liver area. So want to try something anything to feel better.
Take care and thank you.
LIVER: ANA related test are to check for Autoimmune Hepatitis. I had that test a few weeks before treatment only one result was a little high and my doctor thought it was because of HCV and not Autoimmune Hepatitis because the other related teats were ok.
I also had two viral load test one in Dec and one in March 3 weeks prior to starting treatment.
I also had a repeat of the HAV and HBV antibody test and to confirm that my HBV 3 shot vaccine was still effective.
The AMA test looks for autoimmune disorders affecting the mitochondria. It is most often used to detect an autoimmune condition known as primary biliary cirrhosis (PBC)
Sounds like the doctor wants these test to help make a more correct assessment of your current medical condition to better decide when and how to treat. especially because you have been so persistent.
I am a patient at a VA medical center and can usually access my blood work online 3 days after the results are in and maybe up to 10 days for some other tests I can also go to Patient Release of Information at the hospital and get any result that has been competed with the results in the hospital internal computer. even before the online time limit.
Although the regulation allow up to 30 days to provide the requested information or a reason for denial.
.
The only records not completely available are those from the mental health department unless authorized by the mental health provider.
I would check with the hospital or providers office records person to see how you can request copies of your test results and how long you have to wait for them.. Depending on your state there may be laws mandating release of specific information within a certain period of time.
Sometimes you have to be more aggressive to get test results but please don't freakout if you get the test information and something looks scary because more likely it isn't . Most of us have had one or more test showing abnormal. The test results along with your condition, physical examination, symptoms and doctors diagnosis all have to be taken in to consideration.
You are doing the right thing by learning and as much as you can and by asking questions. Then you will be in a better position to work with your treatment doctor to get the best possible treatment in quickest time that will offer you the best chance to beat it and or survive as best as you can for ans long as you can.
Sadly there are many who are no longer with us today because of HCV and related conditions. But still here, are those who have been through the worst situations. Like HectorSF, nan535's husband and others who have failed prior treatment, had decompensated liver, transplant, post transplant reinfection of HCV and they are still fighting trying or will try the new treatments to survive as long as possible in the best as possible health. I really believe that most of them will still be here in a year, two years, three years and hopefully some for many more years.
Keep your faith, fighting spirit and remember you aren't alone. Many of us will do the same and lend support, encouragement, offer opinions and pray for your success in beating this pesky, sneaky, hiding and dangerous little "vermin" who acts like a dragon.
I also had two viral load test one in Dec and one in March 3 weeks prior to starting treatment.
I also had a repeat of the HAV and HBV antibody test and to confirm that my HBV 3 shot vaccine was still effective.
The AMA test looks for autoimmune disorders affecting the mitochondria. It is most often used to detect an autoimmune condition known as primary biliary cirrhosis (PBC)
Sounds like the doctor wants these test to help make a more correct assessment of your current medical condition to better decide when and how to treat. especially because you have been so persistent.
I am a patient at a VA medical center and can usually access my blood work online 3 days after the results are in and maybe up to 10 days for some other tests I can also go to Patient Release of Information at the hospital and get any result that has been competed with the results in the hospital internal computer. even before the online time limit.
Although the regulation allow up to 30 days to provide the requested information or a reason for denial.
.
The only records not completely available are those from the mental health department unless authorized by the mental health provider.
I would check with the hospital or providers office records person to see how you can request copies of your test results and how long you have to wait for them.. Depending on your state there may be laws mandating release of specific information within a certain period of time.
Sometimes you have to be more aggressive to get test results but please don't freakout if you get the test information and something looks scary because more likely it isn't . Most of us have had one or more test showing abnormal. The test results along with your condition, physical examination, symptoms and doctors diagnosis all have to be taken in to consideration.
You are doing the right thing by learning and as much as you can and by asking questions. Then you will be in a better position to work with your treatment doctor to get the best possible treatment in quickest time that will offer you the best chance to beat it and or survive as best as you can for ans long as you can.
Sadly there are many who are no longer with us today because of HCV and related conditions. But still here, are those who have been through the worst situations. Like HectorSF, nan535's husband and others who have failed prior treatment, had decompensated liver, transplant, post transplant reinfection of HCV and they are still fighting trying or will try the new treatments to survive as long as possible in the best as possible health. I really believe that most of them will still be here in a year, two years, three years and hopefully some for many more years.
Keep your faith, fighting spirit and remember you aren't alone. Many of us will do the same and lend support, encouragement, offer opinions and pray for your success in beating this pesky, sneaky, hiding and dangerous little "vermin" who acts like a dragon.
Hi
Could you go to your doctors office and request copies of all your records? I have done that before. They may charge you a copy fee and require you to sign a release but from what I unserstand they are your records and have a right to see them.
Just a thought
Lynn
Could you go to your doctors office and request copies of all your records? I have done that before. They may charge you a copy fee and require you to sign a release but from what I unserstand they are your records and have a right to see them.
Just a thought
Lynn
How odd on tests. I've had two load tests in the past 8 weeks already. He won't tell me amount. Also tested for a and b already too and we're negative. He wants another ultrasound too which was done just a couple months ago.
I called today and asked why no one will call with my results. Told the MA calls with results unless something bad and Dr finds time to call. Worried that is the hold up since still no call from MA.
Seems a bit insensitive to keep me waiting.
I called today and asked why no one will call with my results. Told the MA calls with results unless something bad and Dr finds time to call. Worried that is the hold up since still no call from MA.
Seems a bit insensitive to keep me waiting.
Hi
The only one I recognize is HCV RT-PCR that is a viral load test (how many copies of the virus) for hepatitis c if that is undetectable it would mean you don't have hep c if positive is how many copies of the virus are circulating in your blood.
Yeah does look to me also he is looking at hep A and hep B. Some other tests I haven't seen before and also iron load in your liver too much iron can also harm your liver. Not sure what your doctor is doing here. It is like he is looking for a diagnosis.
Hang in there
Lynn
The only one I recognize is HCV RT-PCR that is a viral load test (how many copies of the virus) for hepatitis c if that is undetectable it would mean you don't have hep c if positive is how many copies of the virus are circulating in your blood.
Yeah does look to me also he is looking at hep A and hep B. Some other tests I haven't seen before and also iron load in your liver too much iron can also harm your liver. Not sure what your doctor is doing here. It is like he is looking for a diagnosis.
Hang in there
Lynn
He may be waiting for this treatment. Your geno is 1a and this trial proved highly effective.
http://www.nejm.org/doi/full/10.1056/NEJMoa1402454
Conclusions
Once-daily ledipasvir–sofosbuvir with or without ribavirin for 12 or 24 weeks was highly effective in previously untreated patients with HCV genotype 1 infection. (Funded by Gilead Sciences; ION-1 ClinicalTrials.gov number NCT01701401.)
Nan
Thank you for the links! The liver foundation link with all kinds of contacts is great.
He won't say anything about why olysio and sovaldi won't work for me other than they won't (even though i'm 1a which i thought sovaldi worked with if you added third med)then I lose my option for the new drugs releasing in October. Does anyone know what those new drugs specifically are?
It may be how long I've had (since birth most likely) or how sick I am with symptoms which is most likely due to liver function itself more so than the hcv. I think my liver us not so good. Have those results coming and getting biopsy scheduled.
He doesn't want to seem to help me find a trial or meds through drug company. Not sure why. Only one other group of Dr's on my insurance to try to change to for a better reponse. Best Dr group in my area not part of my plan and only GI's no hepotologists. All I can afford and it I'd difficult.
He won't say anything about why olysio and sovaldi won't work for me other than they won't (even though i'm 1a which i thought sovaldi worked with if you added third med)then I lose my option for the new drugs releasing in October. Does anyone know what those new drugs specifically are?
It may be how long I've had (since birth most likely) or how sick I am with symptoms which is most likely due to liver function itself more so than the hcv. I think my liver us not so good. Have those results coming and getting biopsy scheduled.
He doesn't want to seem to help me find a trial or meds through drug company. Not sure why. Only one other group of Dr's on my insurance to try to change to for a better reponse. Best Dr group in my area not part of my plan and only GI's no hepotologists. All I can afford and it I'd difficult.
Hope this info on the American Liver Foundation website will be helpful to you.
http://hepc.liverfoundation.org/resources/what-if-i-need-financial-assistance-to-pay-for-treatment/
I have read that there may be resistance issues with Olysio for some. Could that be what your doctor is concerned about?
Do you know your geno type? There are specific protocols for the different genotypes. Have you seen this report?
http://www.hcvguidelines.com It is packed with information.
Best of luck to you.
Nan
Nan
http://hepc.liverfoundation.org/resources/what-if-i-need-financial-assistance-to-pay-for-treatment/
I have read that there may be resistance issues with Olysio for some. Could that be what your doctor is concerned about?
Do you know your geno type? There are specific protocols for the different genotypes. Have you seen this report?
http://www.hcvguidelines.com It is packed with information.
Best of luck to you.
Nan
Nan
Here are sone of the new things he ordered but have no idea what they are or result yet. Have you seen these and know what they are? Results back almost a week ago with no info. He wouldn't even tell me load. I've had A and B checked looks like he is checking again?
HEP A: HAVAB (Hep A AB); HEP B: HBCT (core Ab tot.); HEP B: HBSAB (Surf AB); LIVER: AMA (anti mitochondrial Ab); LIVER: Anti-Actin (Anti smooth muscle Ab); HEP C: HEPTIMAX (HCV RT-PCR <5 IU/ML); LIVER: FEIBC (TIBC/Iron); LIVER: FERR (Ferritin); LIVER: SMMAB (ASMA); LIVER: ANA (IF Method, if + run titer)
HEP A: HAVAB (Hep A AB); HEP B: HBCT (core Ab tot.); HEP B: HBSAB (Surf AB); LIVER: AMA (anti mitochondrial Ab); LIVER: Anti-Actin (Anti smooth muscle Ab); HEP C: HEPTIMAX (HCV RT-PCR <5 IU/ML); LIVER: FEIBC (TIBC/Iron); LIVER: FERR (Ferritin); LIVER: SMMAB (ASMA); LIVER: ANA (IF Method, if + run titer)
And yes GT 1a no result on cirrosis yet but he seemed that it was likely from what he said. Think that is why he isn't just calling with results. I think he wants biopsy approved and scheduled if he calls with bad news. Waiting makes it worse especially when I'm feeling really bad.
I have pain on right side too under ribs nausea vomiting no app dizziness faint feeling.
I have pain on right side too under ribs nausea vomiting no app dizziness faint feeling.
Thanks for info on medicaid/care
I'm not there yet but good to know. My doctor said no so maybe this is new or he was mistaken. He says won't work for me anyway.l but seems trying is better than nothing.
I'm not there yet but good to know. My doctor said no so maybe this is new or he was mistaken. He says won't work for me anyway.l but seems trying is better than nothing.
I hope you the best on your next text results.
I appreciate all the info. I'm just so frustrated to have been sick so long then know for another year with no treatment due to no insurance and now insurance who won't pay for treatment. I hate waiting to get worse but you give me hope and remind me I'm not alone. I feel alone with this.
All these tests only started July 1. I've had much of what you asked about but my doctor won't call with results though I've tried to reach him. Not sure if that's good or bad so I don't gave all the numbers yet.
I do have pitting adema for 5 years along with spiking high blood pressure severe pain and fatigue.
I do have low platelets and esophageal problems for years. They are getting approval for esophageal scope. They did the complete cbc and function and now waiting for him to call on other results. He seemed worried about all this stuff but explained nothing.
I'm in bed again very sick just waiting. That's all I've done for 4 years. At least we know the cause now.
Thank you again. Hopefully they will call soon with results and if they were lucky enough to find the trial for me.
Sorry I'm so down when we all suffer. Just want to be able to try meds to get better.
All the best on your upcoming labs
I appreciate all the info. I'm just so frustrated to have been sick so long then know for another year with no treatment due to no insurance and now insurance who won't pay for treatment. I hate waiting to get worse but you give me hope and remind me I'm not alone. I feel alone with this.
All these tests only started July 1. I've had much of what you asked about but my doctor won't call with results though I've tried to reach him. Not sure if that's good or bad so I don't gave all the numbers yet.
I do have pitting adema for 5 years along with spiking high blood pressure severe pain and fatigue.
I do have low platelets and esophageal problems for years. They are getting approval for esophageal scope. They did the complete cbc and function and now waiting for him to call on other results. He seemed worried about all this stuff but explained nothing.
I'm in bed again very sick just waiting. That's all I've done for 4 years. At least we know the cause now.
Thank you again. Hopefully they will call soon with results and if they were lucky enough to find the trial for me.
Sorry I'm so down when we all suffer. Just want to be able to try meds to get better.
All the best on your upcoming labs
My best guess why not Sovaldi /Olysio now vs. Sovaldi Ledipasvir later is maybe that solvaldi olysio results have been 88% to 100% depending on the patients medical history, while I hear Sovaldo Ledipasvir in the ION trial have been near perfect.
http://hepatitiscnewdrugs.blogspot.com/2013/12/gileads-sofosbuvir-and-ledipasvir.html
Do you have cirrhosis? Are you GT 1a? Do you have symptoms of cirrhosis like pitting edema (swelling in lower legs that stays indented for a while after you push in with a finger). Do you have any ascities? Do you have a low platelet count? Have you been checked for espohageal varicies? Do you get regular (either 6 months or yearly) abdominal ultrasounds to check for liver cancer? Do you get regulat blood tests to check your clotting time platelet count and chemistry? You shold be getting at a minimum yearly or if you have early cirrhosis 6 months a Comprehensive metabolic panel (chemistry) that is the liver function test along with everything else and a Complete blood count (CBC) and if you have cirrhosis an AFP (Alpha-fetoprotein) also to look for signs of liver cancer.
If you have cirrhosis have you received a pneumonia vaccine (normally wouldn't need till 65) Have you been vaccinated against Hep A and Hep B?
Also you shouild be getting the annual flu shot.
I was hep c undetectable at the end of treatment in June but from what I hear everyone become undetectable on treatment. The big test is 12 weeks post treatment that is when the treatment failures are found. I still have to wail till Sept to know if I made it to being cured of hep c
Good Luck
Lynn
http://hepatitiscnewdrugs.blogspot.com/2013/12/gileads-sofosbuvir-and-ledipasvir.html
Do you have cirrhosis? Are you GT 1a? Do you have symptoms of cirrhosis like pitting edema (swelling in lower legs that stays indented for a while after you push in with a finger). Do you have any ascities? Do you have a low platelet count? Have you been checked for espohageal varicies? Do you get regular (either 6 months or yearly) abdominal ultrasounds to check for liver cancer? Do you get regulat blood tests to check your clotting time platelet count and chemistry? You shold be getting at a minimum yearly or if you have early cirrhosis 6 months a Comprehensive metabolic panel (chemistry) that is the liver function test along with everything else and a Complete blood count (CBC) and if you have cirrhosis an AFP (Alpha-fetoprotein) also to look for signs of liver cancer.
If you have cirrhosis have you received a pneumonia vaccine (normally wouldn't need till 65) Have you been vaccinated against Hep A and Hep B?
Also you shouild be getting the annual flu shot.
I was hep c undetectable at the end of treatment in June but from what I hear everyone become undetectable on treatment. The big test is 12 weeks post treatment that is when the treatment failures are found. I still have to wail till Sept to know if I made it to being cured of hep c
Good Luck
Lynn
Sorry typo in last post due to spell correct.
I tried MJ (marijuana) not MY for pain but it didn't work for me.
I tried MJ (marijuana) not MY for pain but it didn't work for me.
My Dr says Sovaldi and olysio with ribovarin will not work for me. No other explanation. He says he doesn't want me to use that then not be able to try the new stuff in October that he is positive will work. I think it bugs him I have done research and had the application to get free Sovaldi at my first visit. I broke out in tears and explained why additionally this was so important but he said he didn't want to give it to me and it not work. No detailed info why it wouldn't work even when I asked and said you have to wait for So visit for I Svosbuvir and Ledipasvir.
I tried contacting hospital and private Dr who does trials and all were backlogged til January for just a first visit to discuss what or if they even have an opening then if I qualify with type and symptoms.
Yes I have searched the Web and keep trying.
Don't understand why Sovaldi isn't better than nothing since I can get it free immediately. I am limited on Dr's to go to with my plan and if I change yet another GI and a two month wait. I think this doctor is good but not flexible to when people need to work outside the box. We don't all have endless money and good insurance and months to play around with.
I still have small hope that the trial hospital that overlooked my result 4 years ago will realize their issue of legal ramification and just put me in their trial. That is the right thing to do but they are in no hurry after causing 4 years of sickness losing my job my marriage and thousands of dollars in medical bills and testing to try to figure out what's wrong.
One thing for everyone....I tried MY as I heard it can help and even cure HCV. I don't believe the cure idea but I think for some people it may help their pain. It didn't work for me but maybe a try for others. I'm back on dilauded which I hate but it's all that controls my pain now.
I just want off pain meds and get treatment and be well again and go back to work.
Thank you for the link. All the info is helpful to at least try.
Are you HCV free now? I hope your treatment is going well for you. If it worked for you there must be something in my results that keeps it from an option for me. I will keep pressing him for more info on why it won't work.
All the best to you. Thank you
I tried contacting hospital and private Dr who does trials and all were backlogged til January for just a first visit to discuss what or if they even have an opening then if I qualify with type and symptoms.
Yes I have searched the Web and keep trying.
Don't understand why Sovaldi isn't better than nothing since I can get it free immediately. I am limited on Dr's to go to with my plan and if I change yet another GI and a two month wait. I think this doctor is good but not flexible to when people need to work outside the box. We don't all have endless money and good insurance and months to play around with.
I still have small hope that the trial hospital that overlooked my result 4 years ago will realize their issue of legal ramification and just put me in their trial. That is the right thing to do but they are in no hurry after causing 4 years of sickness losing my job my marriage and thousands of dollars in medical bills and testing to try to figure out what's wrong.
One thing for everyone....I tried MY as I heard it can help and even cure HCV. I don't believe the cure idea but I think for some people it may help their pain. It didn't work for me but maybe a try for others. I'm back on dilauded which I hate but it's all that controls my pain now.
I just want off pain meds and get treatment and be well again and go back to work.
Thank you for the link. All the info is helpful to at least try.
Are you HCV free now? I hope your treatment is going well for you. If it worked for you there must be something in my results that keeps it from an option for me. I will keep pressing him for more info on why it won't work.
All the best to you. Thank you
Yes me too. I have very similar symptoms. Started 4 years ago with severe muscle and joint pain and severe fatigue. Then I gained 40 pounds and I've never had a weight issue ever in my life. Then rashes and sores severe sweating nails won't grow and break nausea no appetite and half my hair fell out.
I also developed adrenal insufficiency due to they think pain meds but I've read hcv can cause too.
I have 1a and I'm not sure if I'm immune or not. That result coming along with lots others. They are waiting to do biopsy until we get insurance approval but he says it's moot if I can't get meds.
I've most likely had this since birth and from test results so far rbc and other stuff all out of range. He inferred due to tests so far and most likely time had and symptoms this could be very bad but we don't know yet.
All the Dr's want me treated for HCV now so they can see how it effects other issues.
Also I have money and housing through December only. After that I'm actually homeless and lose what little I still have in personal items and my car. That is scary for me. I don't have any family either. My birthday mother had hcv and gave it to me either by birthday or the transfusion they gave me from her.
Dr hasn't gone out of his way to get me into a trial and no help at all on meds. I told him Sovaldi is better than nothing but he seems cavalier and doesn't understand how dire my situation is.
He is a GI. My plan doesn't have a Hepatologist I can see. The hospital is a regional trial site but not part of my plan. Can barely afford this plan and can't get anything else until january when I'm homeless. No one has been in a hurry or realize I have to move faster on this.
They don't seem to understand either if I can't get treatment soon I'm likely to give up without being more graphic. It's been too long too sick and lost everything.
The disease isn't hopeless just my ability to get treatment and before I lose what I have left and am on the street.funny enough medicaid which i dont qual for yet won't cover some meds and what they do they pay very little I'm told.
I appreciate all your info. I hope I can get help with meds and that would change my life.
Any leads anyone has I appreciate.
I also developed adrenal insufficiency due to they think pain meds but I've read hcv can cause too.
I have 1a and I'm not sure if I'm immune or not. That result coming along with lots others. They are waiting to do biopsy until we get insurance approval but he says it's moot if I can't get meds.
I've most likely had this since birth and from test results so far rbc and other stuff all out of range. He inferred due to tests so far and most likely time had and symptoms this could be very bad but we don't know yet.
All the Dr's want me treated for HCV now so they can see how it effects other issues.
Also I have money and housing through December only. After that I'm actually homeless and lose what little I still have in personal items and my car. That is scary for me. I don't have any family either. My birthday mother had hcv and gave it to me either by birthday or the transfusion they gave me from her.
Dr hasn't gone out of his way to get me into a trial and no help at all on meds. I told him Sovaldi is better than nothing but he seems cavalier and doesn't understand how dire my situation is.
He is a GI. My plan doesn't have a Hepatologist I can see. The hospital is a regional trial site but not part of my plan. Can barely afford this plan and can't get anything else until january when I'm homeless. No one has been in a hurry or realize I have to move faster on this.
They don't seem to understand either if I can't get treatment soon I'm likely to give up without being more graphic. It's been too long too sick and lost everything.
The disease isn't hopeless just my ability to get treatment and before I lose what I have left and am on the street.funny enough medicaid which i dont qual for yet won't cover some meds and what they do they pay very little I'm told.
I appreciate all your info. I hope I can get help with meds and that would change my life.
Any leads anyone has I appreciate.
Have you asked your doctor about Sovaldi /Olysio without ribavirin? I am a gt 1a with cirrhosis MELD score 7, Child/Pugh score A. I am a three time null responder to prior treatment with interferon. I was treated with Sovaldi/Olysio from March 19th to June 10th. Two pills a day 12 weeks done.
Sovaldi has a web site for medication help:
http://www.sovaldi.com/starting-treatment/support?utm_source=google&utm_medium=cpc&utm_term=Sovaldi%20Support&utm_content=sitelink&utm_campaign=Branded
and so does Olysio:
https://support.olysio.com/registration
The cure rate was very high for this combo in past clinical trials. Including past null responders with cirrhosis.
Also hopefully being approved this fall is a single pill combo of Sovaldi with Ledipasvir. Most likely I am guessing 1 pill a day 12 weeks (maybe less?) and done.
Seems to me a clinical trial should be no cost to you. Have you tried to contact the hospital conducting the trial directly?
I just checked the clinical trials gov web site https://clinicaltrials.gov/ct2/results?term=hepatitis+c+denver&recr=Open
unfortunatly I don't currently see anything that would be what you would qualify for maybe in the futurt they could have one that would work for you.
Good Luck
Lynn
Sovaldi has a web site for medication help:
http://www.sovaldi.com/starting-treatment/support?utm_source=google&utm_medium=cpc&utm_term=Sovaldi%20Support&utm_content=sitelink&utm_campaign=Branded
and so does Olysio:
https://support.olysio.com/registration
The cure rate was very high for this combo in past clinical trials. Including past null responders with cirrhosis.
Also hopefully being approved this fall is a single pill combo of Sovaldi with Ledipasvir. Most likely I am guessing 1 pill a day 12 weeks (maybe less?) and done.
Seems to me a clinical trial should be no cost to you. Have you tried to contact the hospital conducting the trial directly?
I just checked the clinical trials gov web site https://clinicaltrials.gov/ct2/results?term=hepatitis+c+denver&recr=Open
unfortunatly I don't currently see anything that would be what you would qualify for maybe in the futurt they could have one that would work for you.
Good Luck
Lynn
Yes me too. I have very similar symptoms. Started 4 years ago with severe muscle and joint pain and severe fatigue. Then I gained 40 pounds and I've never had a weight issue ever in my life. Then rashes and sores severe sweating nails won't grow and break nausea no appetite and half my hair fell out.
I also developed adrenal insufficiency due to they think pain meds but I've read hcv can cause too.
I have 1a and I'm not sure if I'm immune or not. That result coming along with lots others. They are waiting to do biopsy until we get insurance approval but he says it's moot if I can't get meds.
I've most likely had this since birth and from test results so far rbc and other stuff all out of range. He inferred due to tests so far and most likely time had and symptoms this could be very bad but we don't know yet.
All the Dr's want me treated for HCV now so they can see how it effects other issues.
Also I have money and housing through December only. After that I'm actually homeless and lose what little I still have in personal items and my car. That is scary for me. I don't have any family either. My birthday mother had hcv and gave it to me either by birthday or the transfusion they gave me from her.
Dr hasn't gone out of his way to get me into a trial and no help at all on meds. I told him Sovaldi is better than nothing but he seems cavalier and doesn't understand how dire my situation is.
He is a GI. My plan doesn't have a Hepatologist I can see. The hospital is a regional trial site but not part of my plan. Can barely afford this plan and can't get anything else until january when I'm homeless. No one has been in a hurry or realize I have to move faster on this.
They don't seem to understand either if I can't get treatment soon I'm likely to give up without being more graphic. It's been too long too sick and lost everything.
The disease isn't hopeless just my ability to get treatment and before I lose what I have left and am on the street.funny enough medicaid which i dont qual for yet won't cover some meds and what they do they pay very little I'm told.
I appreciate all your info. I hope I can get help with meds and that would change my life.
Any leads anyone has I appreciate.
I also developed adrenal insufficiency due to they think pain meds but I've read hcv can cause too.
I have 1a and I'm not sure if I'm immune or not. That result coming along with lots others. They are waiting to do biopsy until we get insurance approval but he says it's moot if I can't get meds.
I've most likely had this since birth and from test results so far rbc and other stuff all out of range. He inferred due to tests so far and most likely time had and symptoms this could be very bad but we don't know yet.
All the Dr's want me treated for HCV now so they can see how it effects other issues.
Also I have money and housing through December only. After that I'm actually homeless and lose what little I still have in personal items and my car. That is scary for me. I don't have any family either. My birthday mother had hcv and gave it to me either by birthday or the transfusion they gave me from her.
Dr hasn't gone out of his way to get me into a trial and no help at all on meds. I told him Sovaldi is better than nothing but he seems cavalier and doesn't understand how dire my situation is.
He is a GI. My plan doesn't have a Hepatologist I can see. The hospital is a regional trial site but not part of my plan. Can barely afford this plan and can't get anything else until january when I'm homeless. No one has been in a hurry or realize I have to move faster on this.
They don't seem to understand either if I can't get treatment soon I'm likely to give up without being more graphic. It's been too long too sick and lost everything.
The disease isn't hopeless just my ability to get treatment and before I lose what I have left and am on the street.funny enough medicaid which i dont qual for yet won't cover some meds and what they do they pay very little I'm told.
I appreciate all your info. I hope I can get help with meds and that would change my life.
Any leads anyone has I appreciate.
Thank you. I will check this PAN. My Dr did that a trial us my only hope. We have one of the largest hospitals doing trials in Denver but it seems impossible to get in. He says he will check but never gets back to me knowing how bad I'm feeling. It's interesting as it was that hospital who tested me 4 years ago missed the results and never told me. I approached them about it and asked for med help minimally but not in any hurry though they admit their mistake.
Maybe some people have other options for me they can contribute along with PAN. I desperately want to get better so I can work and have a normal life again.
Thank you for your input and positive words. I'm really trying. I don't want to give up yet. It's been so long and I've lost everything.
Maybe some people have other options for me they can contribute along with PAN. I desperately want to get better so I can work and have a normal life again.
Thank you for your input and positive words. I'm really trying. I don't want to give up yet. It's been so long and I've lost everything.
I live in Colorado. My state runs affordable care and wouldn't let me have insurance. Didn't meet criteria. I guess sick for almost 4 years and getting terminated from job due to illness and losing insurance not enough.
Got insurance direct through Humana so no discount like marketplace ACA but on taxes I guess. This was the only plan I could afford at $500 a month with a lower deductible. They cover no HCV meds of any kind.
SD I won't work as it is curable and it will take around 2 years to work through SSDI. I used to help people get SSDI and other legal issues if they couldn't afford.
I just need meds. Sovaldi maker offered for free but my doctor doesn't want to use it with 1a due to also having to use ribovarin. He's afraid I won't have a good result and with my other results he only wants what comes out in October I think Sofasbuvir. I've gad since birth so maybe that has a factor. Don't have biopsy done yet waiting on insurance approval. Fibroscan cheaper and no pain but out if network and they refuse that too and won't even consider. Sad we have options to get well but they only pay for cancer and transplants.
Thanks for well wishes. Very depressed and can't go on in this pain and other stuff. It's been 4 years. Rather not keep going. It's sad it's come to that over insurance and money for me.
Got insurance direct through Humana so no discount like marketplace ACA but on taxes I guess. This was the only plan I could afford at $500 a month with a lower deductible. They cover no HCV meds of any kind.
SD I won't work as it is curable and it will take around 2 years to work through SSDI. I used to help people get SSDI and other legal issues if they couldn't afford.
I just need meds. Sovaldi maker offered for free but my doctor doesn't want to use it with 1a due to also having to use ribovarin. He's afraid I won't have a good result and with my other results he only wants what comes out in October I think Sofasbuvir. I've gad since birth so maybe that has a factor. Don't have biopsy done yet waiting on insurance approval. Fibroscan cheaper and no pain but out if network and they refuse that too and won't even consider. Sad we have options to get well but they only pay for cancer and transplants.
Thanks for well wishes. Very depressed and can't go on in this pain and other stuff. It's been 4 years. Rather not keep going. It's sad it's come to that over insurance and money for me.
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