Post treatment Hell

Have you had an interferon hangover if so, how long did it last?
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Marvin
New Member


Date Joined Apr 2006
Total Posts : 9
   Posted 4/21/2006 12:14 PM (GMT -7)   
Good day,
 
I would like to start this forum with prayers for all those that are traveling on the hep  c  trail. If you just found out that you have hep c or you been though the interferon nightmare or a family member that had to put up with us before or after my heart felt prayers go out and continue for all.
 
I'm going to tell my story mostly because it may help someone else, but it my help me heal also...I 18 months post treatment with no sign of the Hep C virus and still a mess.
 
In August of 2003, I was told I had the Hep C virus.  It was devstating to me.  I was in the middle of a very successfull career and with everything to look forward to.  In November, the biopsy came back with Type 1 Hep C-stage 3 liver disease and a 12 million viral count. Again, things started to stack up in my mind,  the Dr. lined my options up, I chose the combintion therapy based on what the DR. told me. 40% success rate with mild to no side effects.  I start therapy in Jan. 04  in late Feb of 04 is when things start to go to hell.  I was trying to work, and maintain an elected position at the time.  I became so sick that my work suffered, my family suffered and suffered for the next 36 weeks.  I was close to death many times during the 48 weeks of treatment of interferon and Rebeferon.  I Had to leave my great job beacause I was to sick to work.  My family had to pick up the slack.  We lost all benefits from my work.  T
 
The good thing after all of this is the virus is not shown up after my 6 month test.   Although I have not been tested since.  Somewere along this I pickup Fibromyalgia, Chronic Fatique and other things.I'm on big doses of morphine and it still doesn't take all the pain away so I'm not sure if pain killers are the way totally.  There must be something else going out there, I to have 5 specialists 2 Drs. and I'm a mess. Three years of being really sick, 48 weeks of Hep C treatment and now this stuff for over a 18 months, but the Drs say I'm lucky that I still here... The Feds say I not disabled enough for ssd, but I can hardly walk on a good day.  My mental status is in question some say bi-polar, some say the interferon fried parts of my brain. I still at home barely functioning at best, don't drive very much and my Longtermcare insurance is threating to leave us dry.  Makes you want to cry.   3years not hep c and a mess
 
Any thoughts
 
 
 

Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 4/21/2006 12:46 PM (GMT -7)   

Hi Marvin,

Welcome to the forum and thank you for sharing your story with us.

You have been through alot and it sounds like the future still holds pain, disability and uncertainty for you. I'm sorry they do not consider you disabled enough to qualify for benefits yeah You must appeal and perhaps seek legal assistance.

I am caregiver for my husband who has end stage liver disease. He is receiving hospice services with no treatment options available. We all share a common theme and can benefit and help sustain each other.

I'm sure other forum members with experience dealing with Hep C will have more specific information or suggestions to help you. And they will be helped by your input.

Hugs,

Barb


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


Marvin
New Member


Date Joined Apr 2006
Total Posts : 9
   Posted 4/21/2006 12:52 PM (GMT -7)   
Barb,
 
It makes me cry just to know someone is out there.
 
thanks
 
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/21/2006 3:15 PM (GMT -7)   
Marvin, welcome to the forum. I am so sorry you have gone through so much misery for three years. It's good that you are free of the C virus now, though. First of all, your doctor telling you there are little to no side effects to the combo treatment goes against everything I have heard and read. Based on that, most people are unable to continue working while being treated and get very sick.

Where is your pain and what is the cause of it? I now have liver cancer as a result of hep C, and I am not taking anything near as strong as you are. You should not be taking morphine unless there is some underlying condition that has not been treated.

How far did you go with your SSD claim? If you were only turned down once or twice, get a lawyer to appeal.

While illness during treatment is common (after all, they are putting chemicals into your body to kill cells--interferon is a cancer drug), I have never heard of anyone experiencing what you are post-treatment. It could be that you developed some kind of immune system dysfunction as a result of treatment.

Do your doctors have any clue why this is happening to you?

Please come back and post. People here are terrific and are going through a wide variety of liver problems or are the caretakers of those with same.

Prayers for your healing,
Connie

Post Edited (hep93) : 4/22/2006 1:43:13 PM (GMT-6)


Marvin
New Member


Date Joined Apr 2006
Total Posts : 9
   Posted 4/21/2006 3:34 PM (GMT -7)   
Connie,

The Dr's say I have Fibromyalgia and Chronic Fatique. I have also been slated of having a lupus like syndrome but nobody can say anymore than that. They did say it is not lupus but my test indicate lupus? Every bone in my body hurts like I was still on interferon... I've been off of it since Dec 05. Stage 3 Fibrosis has been slated to me as a non factor at this point.... that is why I was turn down on my ssd. I retained legal help and we are in our 18 month waiting period for a heaing.

I know I'm not alone, it makes me proud to know this...Most days I don't have the brain power to do this much computer stuff.... Not to complain or make light of things...Some days I don't even know what a computer does or how it functions? Today is a good day, so bring on the rain......


Hugs

Marvin
New Member


Date Joined Apr 2006
Total Posts : 9
   Posted 4/21/2006 3:42 PM (GMT -7)   

Connie,

I'm so sorry for my insensitive nature, my heart goes out to you. May my prayers ARE for you, AND help with your liver cancer.

God Bless

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 4/21/2006 4:09 PM (GMT -7)   
Hi marvin, welcome to HW forum. Thankyou for sharing you story with us.My heart goes out to you & your family.With big doses of morphine I'm surprised you can focus on anything.I was misdiagnosed with lupus & was on morphine, demoral, t"3 & sedatives, anti depressants & prednisone for the lupus etc. I had started out with fifbromyalgia. The lupus I had found out I never had it was my live disease that altered the test results to show a positive. What had happened was the prescription drugs Starting with the pain meds for fibro were playing havoc with my liver & this gave me false readings for lupus. What I did have was cirrhosis from the meds. . No-one knew till I went into my first comma but by then it was to late. I was so stoned on the morphine I was in a wheelchair & could no longer frunction period. Eventually I got another Dr. whom helped me get off all the pain meds etc.But the liver dammage can never be undone. I also found later the additional pain was from developing ostreoarthritis from the cirrhosis. I am in 3rd stage cirhosis..The continued use of pain meds also caused worsening encephalopathy for me big time & the lactulose did not work till I got off them & then 6 months after that.Have you considered a pain control clinic? I pray you get on SSD soon. Hang in there & come back as often as posible. you will find a lot of support here.Marvin what are the 5 specialists for & 2 Drs.? Do they all work together & consult with one another? I hope one of them is a good hepatologist. With what treatment has it done to you brain what has done to your liver if anything? My thoughts & prayers are with you . later....


"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie

Post Edited (lerie) : 4/21/2006 5:32:25 PM (GMT-6)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/21/2006 7:13 PM (GMT -7)   
Marvin, don't give it a thought. When we are trying to cope with chronic pain, that is often all we can see.

Fibromyalgia and chronic fatigue syndrome are both autoimmune diseases. I think lupus is, also. Do your doctors feel they arose from the hep C treatment?

I haven't heard of an 18-month waiting period for SSD. I believe it is less than a year, and SSI will kick in prior to that if you qualify financially. However, Social Security Disability is different in every state.

Sending healing thoughts your way,
Connie

TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 4/21/2006 7:14 PM (GMT -7)   

Hi Marvin,

Welcome to the forum! I am my husbands caregiver he is in endstage cirrhosis with possible HepC and we have been going through the very difficult and time consuming task of trying to get listed for a transplant. He has been hospitalized 4 times since the first week in Dec of 05.

I am so sorry you and your family have endure so much suffering! I really don't know much about the Hep C treatments. The good thing is the Hep C virus is not showing up!

My husband was just approved for SSI/SSD, it took us 3 months. I have a friend that just had a SSD hearing it took him 2 years to get it and they said it would be 3 months before they get an answer. He did hire an attorney. Just keep the faith that you have and you will make it!

Hugs and Prayers

Teresa

 


wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 4/22/2006 9:16 AM (GMT -7)   
hi marvin,
we are waitin for results of the first appeal for my hubby, He is takin interferon for hep b. I am sure he could not work ,and have contacted our congressman for help with the appeal,could you try this? If the first appeal is denied then it goes to the federal court,,,which takes 18 mths,so we are hoping to get it through this time....please dont give up,contact your congressman,they should have someone in their office that just deals with being an advocate for ssi....hope this helps marvin. I look forward to exchangin stories and everyone here is very helpful:) My hubby just had surgery yesterday,so this is a fast reply,,,ya arent alone:)
trish
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