Post Treatment Survey
Several weeks ago staff at The Hepatitis C Trust asked me to have a look at, and comment on, a survey they were developing on symptoms and experiences following combination therapy treatment.
I’m really pleased to see that they have now got the Post Treatment Survey up on their website, ready for people to complete online.
I am convinced that the medical profession and the pharmacetucial companies are not aware of the the sorts of experiences that people go through after completing the treatment. Certainly I was not prepared beforehand for the experience I went through. And it was only by sharing a little of it with others, and reading more on the Forum when others began to write about their experiences, that I realised it wasn’t just happening to me.
Of course, patients stop seeing their nurses at clinic when the treatment finishes - so nurses (and doctors) just don’t hear in detail about the various side effects and after effects that happen to patients. And the pharmaceutical literature says the medications clear from the body in a couple of weeks. That may be true but that’s not all there is to it though. Not everyone’s the same - there may be some who do just walk away from treatment free of any further effects. However there are loads of us who have struggled through this period. Sometimes for months and, in some cases, even longer.
At the moment all these experiences remain anecdotal - with some patients experiences being regarded, or disregarded, as a ‘one-off’ or a curiosity. By writing on our blogs and posting up comments on the Forums, though, we are building up a credible bank of information - that’s the power of the internet and people working together. Next step is to help develop a proper and authentic knowledge base about the Post Treatment experience. This will benefit other patients, the medical profession and lead to better post treatment hospital care. The Hepatitis C Trust are taking this step - developing and publishing a survey.
This particular survey focuses on the physical effects. There can be emotional and psychological effects too. Personally I found these more difficult and distressing than the phsycial ones. Staff at the Trust have reassured me they will be tackling these aspects too in future surveys. (Perhaps they should have labelled this survey Part One!)
The survey is on their site now, however. Do go and visit and fill it in
April 19th, 2006 at 9:35 pm
Yes, interesting that they are just finding things out now.
Unlike most others I remain in contact with my nurse.
I saw her the other day when I went in for another shot of steroids.
We talked of neurological damage and it is on the agenda for the big meeting of consultants in the midlands in May. I mentioned some other things which I won’t talk about here and all is not as it seems.
April 22nd, 2006 at 2:22 pm
Hi Ron,
Checked out the site and completed the survey. Very good idea! All best wishes,
Sue
April 25th, 2006 at 2:33 pm
Hi, I am really curious to know about all not as it seems…
As a fellow hepper I like To KNOW the Good & Bad things.
I haven’t had TX yet but am neurologically challenged…
Something I do know is that a lot of heppies put a lot of stuff down to TX when I have same symptoms and I think a distinction between TX symptoms and long-term HCV symptoms is the way ahead.
The Trust are slowly and steadily making headway in all theses areas, good news…
Good Health Janie
May 1st, 2006 at 3:33 am
Hi Ron
Well done on the 6 month milestone. I am struggling at Week 12 post treatment - still not back at work - dealing with depression, anxiety, sleeplessness, ribavirin ‘cough’, hairloss (still!), ache in the liver region etc
I will fill out the survey on-line, and thank you for promoting this initiative and discussion. I am interested if ‘overcomer’ can add any information to ‘not is all as it seems’ …?
Happy to pursue dialogue on another thread but lets see how this goes … reading your 29 April entry - yes - I too am wondering if I will ever be myself again.
What I would really like is a month in a healing retreat where I can do work in exchange for accommodation and food. Have lots of manic energy still, and would like to garden and cook somewhere peaceful, where I can be a recluse (but not on my own!!)
all the best
Shell
June 27th, 2006 at 9:10 pm
Hi Ron,
I am delighted to know you are negative after six months post treatment test. I am actually on 18th week of treatment. 12 weeks results showed virus undetectable. This medicine is not easy to tolerate but thinking of it as a best chance of relieving pain gives a bit of courage.
All the best for your future health.
Regards
July 1st, 2006 at 4:44 am
I finished my treatment about two years ago. Just beginning to get back to “normal”. Sleepless for months, aching in the area of my liver for about a year. Terrible mental fogginess and still have loss of vision.
August 1st, 2006 at 5:17 am
Could someone please tell me what are some common post hep-c trt symptoms? my mom just finished her 1 year tratment with interferons and ribvarin. She is having pain on her liver area (which i’ve just read here, thank you for posting) and severe numbness on her arm/finger joints as well as muscle soreness on her arms. Her doctors can’t figure out whether these soreness/numbness is associated with Hep C meds or not. It is quite severe that she is having problem holding onto a fork!! Thank you in advance for your help!
September 9th, 2006 at 6:03 am
Nice to find this support for Hep C by using a search engine. I was on the Interferon/Ribvarin last year from 06/05 to 10/05 when my insurance coverage changed and would no longer pay for my medicine. I was one of the 10% that had “extreme” side effects but the medicine was working and my viral load went way down. I am getting ready to go back on the treatment for a full 52 months. The biggest issue I have is excruiating neuropathic pain in my feet that I currently take heavy painkillers for. This neuropothy is commonly linked to diabetes and I went through quite a few doctors before I could find one that actually beleived I was having this pain. Has anyone else experienced this? When I get a chance I will visit the web site linked above and try to post some of the things that happen to me when I am on the Int/Rib treatment. Wish me luck!
September 18th, 2006 at 9:24 pm
My husband completed his Hep C 48 week treatment in Oct 2005. Contracted in 1977 by blood transfusion he found out 27 years later he had Hep C. For the last 15 years he was feeling “flu like” and muscle pain which caused some depression in the last few years because we didn’t get answers from the drs. Treatment side effects were extremely hard. Severe body pain, nausea, 800 triglyceride count, mouth fungus, sleeplessness, terrible anxiety and worsening depression, approx 50 lb weight loss, extreme itchiness, dry mouth..
Though we are grateful the treatment worked, he is still having bad muscle pain, spine tender to the touch, depression, and can’t concentrate. This website helps us to see that other people are experiencing some of these symptoms too. Would like to know about other internet sites to get info on this and hear from anyone who wants to share their knowledge in these areas at flflashes@aol.com thanks. How long will this last???
September 20th, 2006 at 10:04 am
I have 5 weeks to go before I finish the 48wk treatment. After 6 months of treatment the HepC virus was undetectable: It was great news after suffering depression, aches and pains, nausea and hormonal changes etc. The last 3 months I have had dreadful itching, no creams help. And I have had dreadful hair loss so if someone tells me it is likely I will still be losing hair after treatment I think I will have to start looking at wigs.
Information about what the symptoms are after finishing treatment should be made available prior to treatment…My husband has also finished treatment two years ago and he also has symptoms still. With him the virus returned after 3 months of finishing the treatment; He was so positive after he finished and then it was like the world had come down on him…I am crossing my fingers to see what happens with me…We have worked with this as a team for a long time: caught by blood transfusion after my husband had heart surgery back in the 80s..
November 20th, 2006 at 12:20 am
hi,
my husband finished his treatment for hypatitis c type 3.But after 5 months have passes , his result says that there is no virus.But still he feels severe pain in muscles, sometimes vomiting, and pain around the liver area.his weight has also declined.Some times
I am wondering about these symptoms
December 4th, 2006 at 1:01 am
I carried my Hepatitis C for 25 years before I found out I had it. I did go to a Dr in 1978 for stiffness in my joints. He took a blood sample and it showed that I had what they termed~ NON A - NON B Heptitis.
It was too early for them to even give it a name. I did not receive any instructions to seek out a gastroenterologist, nor was I offered any follow up care. I went through the interferon/copegus treatment for a full year
I had cirossis and my viral load was off the charts. After treatment, my viral load was non existant and the virus was and is barely detectable in my blood. I talked to my Dr at the time and suggested to him that I make a small brochure to put in his office for people beginning treatment. He told me he did not think that was a good idea because my side effects were so bad, he did not want me to scare them away. I experienced 15 different side effects including becoming severly anemic. I began treatment in May of 2003 and finished it in May of 2004. The post side effects I am experiencing include but are not limited to depression, joint pain ( I currently have bursitis in my left elbow, however I dont know if this is related in any way ) dizziness, confusion, concentrating and sometimes loss of balance. I have been off treatment for two years now. I am confused and would like to know if anyone else is experiencing these or other post side effects from the treatment.
December 4th, 2006 at 1:03 am
by the way, I was diagnosed as having Heptitis C 1 - A
January 8th, 2007 at 6:09 pm
I finished treatment (PEG-Interferon/Ribavirin)for Hep-C almost exactly 6mos. ago. For 6mos. starting Dec.20,2005 I got a shot in my stomach each week, and I took twice as much as we had talked about me taking and they decided to to a year’s worth of treatment in 6mos., and I still suffer side-effects, even though I’ve been done since May 21,2006!! I didn’t start losing my hair until a week after I was done! I’ve gained weight, am constantly battling depression and social anxiety, EXTREME Hot flashes-please help with that! Is it only me with the sweats all the time??-,nausea, and constantly tired!! Help for Hep-C in SC.
January 18th, 2007 at 9:57 pm
Hi Aliina
I think the whole post-treatment experience is one that doctors and pharmaceutical companies don’t know much about. For one thing, most people get medial discharge once they clear the virus so they don’t know what patients often experience. Your story does sound familiar though.
Have you checked out my Hepatitis C Forum - there are others having discussions and sharing their Post Treatment experiences.
You might be interested to have a look …. and join
http://www.ronmetcalfe.com/hepcforum/
January 23rd, 2007 at 12:30 am
Hello All, I took the stuff in 2003, pills, shots in the stomach, etc for 6 months through the Minneapolis VA. It was the worst experience I’d ever had, what I can remember of it. I lost a full year-or maybe alittle longer that I don’t remember but a few things that happened in my life. I still have hot flashes that just shut me down to the point of quickly getting to the side of the road and many times almost passing out. I live in northern Wisconsin and when I got hot flashes in the winter I would sit in a chair outside sometimes -20 degrees to get some type of relief. Once in the beginning I stayed out to long- I soaked the clothes I was wearing and they froze to the chair. I also came close to ending my life from that stuff. I still get hot flashes (flash is not the word to use because they usually last 4-6 minutes) I never did get below what the nurse said was considered not having hep C anymore but ever since I started taking milk thistle and other herbal concoctions my numbers are staying steady and my liver is fine also. Another thing that happened that I don’t know if it’s related to but happened while I was being treated. I was stung twice by a bee on my left thigh and to this day it is still sore and when something touches it there is quite a bit of pain. I had a fractured back while in the service and had surgery on it in 2000. The regular fusion and titanium in the lower lumbar area. I don’t know if this is related though I had a severe bout with sciatica for almost 5 months though steroid injections did help. I would never again take any experimental stuff again unless I would die without it. And if I knew it would be as bad as the last attempt to get rid of it, I’d probably still say no.
February 3rd, 2007 at 1:54 am
Hi all. I had a horrible time, after the initial diagnosis a 13 centimeter tumor was found and I got the don’t worry you don’t have a year, I beat the odds. I had the worst genotype, viral load off the charts, and literally had to attend forums by the leading heps in Cal. to make it through. My dr. at UVA wouldn’t offer me interfuron rib. because it was a waste of time. Three weeks into it I was so neutropenic, below 500, and anemic, in a wheel chair he tried to take me off. I demanded a blood test, and I was an early responder. UVA in Virginia was clueless. On my own initiative I went to a hemalologist/oncologist and begged for help. In addition to begging I came loaded with print outs of current case studies and evidence I needed procrit and, lord the memory just went. A pegylated shot to fight neutropenia, Neupogen! I am a year and a half post. I was told adios by the liver guy and am now seeking appropriate follow up care for my many symptoms. As far as memory better to lose it than the liver. Appears damaged as does intellect. I have recurrent anemia and after being prescribed iron to choke a horse by two GPs I didn’t take it. I have sought out my hematologist/oncologist. I fired the GPs and my doc agrees privately. Even the little iron I had taken for a week caused my liver to act up. We are now launched on another adventure, and he is the only doc. I have any faith in. I mentioned I needed hepa and b vaccines and both gps and the liver Doc asked why!! I am starting to get long winded, but I will find the answers and let you know. I have also developed bursitis, it felt like a truck ran me over each time the neupogen kicked in, and I would be curious to know if the guy that also had that complaint also took it. I am now working armed with very little knowledge, there is nothing ou there, but we have a relapse rate between 3-7% >
February 12th, 2007 at 4:18 am
I am 8 mon. post treatment (this time). I’ve treated numerous other times, all without clearance of the virus. I’m type 1A/1B, a double genotype. I am borderline cirrhosis on my biop. I’m on disability as a result of the depression, muscle aches, brain fog, and general lack of ability to function from both the Hep C and all the treatments. I am still having a problem with the hot flashes. It’s weird because before treating this last time, I was maintained fine on my HRT (I’ve had a hysterectomy) and now, I’m flashing all the time. I’m thirsty all the time, but the internal med doctor tells me to stop drinking so much water because of my sodium being too low (although it’s not that far off normal limits). I wish that the doctors would realize that there are post treatment issues….
February 12th, 2007 at 4:36 pm
I’m type 1A, 1 year post treatment. Treated with Peg-Intron & Ribavarin for 44 of 48 weeks at which time I was stopped because I was dying from a lung infection. I am in the process of obtaining disability which I would prefer not to do. If only I could return to the person I was before treatment!!! I suffer from extreme fatigue, muscle aches, brain fog (hard to function), balance problems, tics, depression, excessive sweating, bad headaches, swollen joint and bone pain (possibly neuropathy). I have been to several doctors who all give me a different diagnoses and suggestion (usually to see another dr.) I HATE what this poisen has done to me!
February 12th, 2007 at 6:20 pm
I am type 1A and just found out at 3 months post that it is back. I was UND at 24 weeks but didn’t work. This was my second bout with interferon and failed twice so this means that I have no option at this point. I have been off treatment for approximately 120 days now and the main issues that I have had is rapid pulse, cramping both hands and feet, joint ache tha I have never had and blurred vision (came with treatment, thought process seems to be very slow. These issues are absolutely due to the treatment. They didn’t exist prior to treatment and I did not experience them when I went through the interferon only treatment. Only with the addition of the riba did I see this noticable difference. I will not repeat this type of treatment and give up another year of what I have left. Dale
February 15th, 2007 at 5:28 am
Dale, I think I saw you under the other site, Medhelp. I’m Susan400 over there. Good to see you here.
Going to bed now…..
Susan400/Libby40
March 29th, 2007 at 6:35 pm
I have had no treatment for my Hep C although I have has this disease for 35 yrs at least. I found out in the early 80’s when it was non a non b. I have been managable until 3 yrs ago when at 51 ( 11 years after a farily easy menopause with the help of mid HTR) I started have severe dibiliating hot flashes 24 hours a day. My blood pressue goes from 120/80 to 210/150 every thirty minutes day and night. I have been to 20 doctors all suggesting I start PEG- Interferon treatment but I would die if these hot fleashe got one bit worse/ my entire body turns bright red \, my hands are always BTIGHT red now each flash is very painful and is buring my skin up. I would stroke out or have a MI if they were to get any worse. I have never heard of nor have any of my doctors seen or heard of anyhing llike this. I’m desperate I can’t go on like this it has been non stop for 3 yrs with no releife in sight and no diagnosis of any kind. Can some one help me. Please any advise would be appriciated or a doctor I can talk too. THANK YOU
Debra D
Debradmail@yahoo.com
March 31st, 2007 at 2:34 pm
I was diagnosed with Hepatitis C after contacting it about 30 years ago. I also had Hepatitis B. I’ve been on 4 months of treatment of peginterferon alfa -2b injections once a week and 4 pills daily of ribavirin 200mg. My side affects are fatigue, headache, insomnia, dizziness, nausea, blurred vision, dry mouth & cough, dry skin, itchy skin rash, diarrhea, taste pervision, My finger joints are swollen, painful and I can not close my fingers into a fist. I do have hot flashes, but don’t know if it’s due to my age, female, 54. My gastro doctor tested me for Cryoglobulinemia but it was negative. I lost my job 5 days before Christmas, the day after I told my boss I was diagnosed with Hep C and starting treatment, they said nobody wanted to work with me. I tried to fight it and it was very stressful, but my boss happened to be a prominent doctor in a small town and I lost my case. I’ve been depressed, sometimes I don’t leave the house for days. My husband is fed up with me and told me if I would get a job I would be well. I think everybody would be better if I weren’t around. I pray every night to die, but I wake up each morning. I started drinking beer to ease my boredom.
April 1st, 2007 at 1:40 pm
Hi Sharon
Sorry to hear you are having such a rough time at the moment. Treatment is not easy - and losing your job makes it extra tough. You already know, drinking beer will not help as it can compromise your treatment.
Lots of people have a hard time on treatment though - you are not alone.
Why not check out The Hepatitis C Forum that I started?.
http://www.ronmetcalfe.com/hepcforum/index.php?sid=0d9bcef3d2770b585e83dda435df7c7a
There are over a 1000 members - lots of treatment. You are bound to find some support there from others in a similar situation.
See you on the Forum??
Wishing you well
Ron
April 22nd, 2007 at 8:48 pm
Thank You
May 5th, 2007 at 8:09 pm
I had hep c for 30 years. I have done treatment 4 times. The 4th time cleared virus. I have severe depression, anxiety, body pains, brain fogginess. If I could go back in time I would never have done the treatment. It has left me disabled. I am so much worse off now than I was before. I experienced every side effect and more. Lost half my thyroid because of treatment. I cannot function well at all. It has been almost 2 years since my 4th treatment. I was hoping I would feel better, but I am getting worse.
May 22nd, 2007 at 2:07 pm
Hi Kate
Sorry I have been so long answering – I have been away (in California where, I suspect from your IP address, you live)
I am also sorry to read about what a difficult time you have had after treatment. That certainly has been rotten luck.
Kate, it may be useful to have a look at the Hepatitis C Forum I set up
http://www.ronmetcalfe.com/hepcforum/index.php
There is a section there called Post Treatment Experiences for comments and discussions by people like yourself who have experienced difficulties after treatment.
I hope you will find that useful.
Meanwhile,
Wishing you well
Ron
June 9th, 2007 at 7:36 pm
In reading the posts and having taken the on-line survey I at this moment am feeling some relief! I had the unrealistic expectation that within a few weeks of ending my treatment for Hep C (type 2b) that I would feel better than I had in years! Unfortunately that was not MY experience. Pre-treatment I was not one to “run to the doctor” and did not during my 6 months of treatment. I injected myself with the “full load” of Interferon (i.e., took what the vile had to offer) as I knew that was the element that directly killed the virus, and took 800 mg daily of the Rebetrol…I never missed a dose or “nutted up!” I have discovered, however, that what I am experiencing is not due to my “lack of personal motivation or desire.” It is due to my having side effects of my treatment. For that I am grateful and will endeavor from this point out to bring public awareness to this issue and those of us who are “impaired” from “the cure!” May God bless each of you that journey through this site, and I am thankful that I am not alone….wish I were, but, company reifies my personal analysis that my current “symptoms” are not just a mind over matter issue….again I thank each of you and don’t hesitate to contact me if interested in being involved. Dave
June 11th, 2007 at 11:00 am
Hi Dave
My experience was very similar to yours. Being very public in writing this blog I was very hesitant in saying so because I thought it might discourage those still on treatment. However, I discovered there are loads of people like you who were heartened to learn it isn’t just them taking a while to recuperate from the treatment. Post treatment is not an area previously researched by pharmaceutical companies or medical profession - after all the big focus is on treatment and when that’s finished they’re on to the next patient.
Dave have you checked out the Forum I set up where there is a community of poeple world wide with an interest in HepC?
http://www.hepcukforum.org/phpBB2/index.php
Wishing you well
Ron
August 7th, 2007 at 7:14 am
I am to begin trt this wk, both the injections and the pills. I always believed I was of strudy stock, a non complainer but I feel as if this process is very solitary, cold, cookie cutter process that may leave me worse than the illness. 48 wks of misery I can stomach but a life time of damage. Hep c has gratefully moved very slowly - 14 yrs dx but I have probally had it 30+ and have just hit stage I damage. If I can get 15 yrs between each stage. I would most likely be dead anyway. Should I presue trt or play the odds. Advise PLEASE
al
August 7th, 2007 at 10:52 am
Hi Al
That’s a tough one to answer. Ultimately you have to decide for yourself of course.
Whether to do the combination therapy treatment, whether to wait for the next generation of drugs or not treat at all was something I discussed with my hepatologist over a period of almost two years. His advice was useful and I would urge you to discuss all the implications with your physician too.
HepC does move slowly, but I believe there is some evidence that the damage can speed up the older you get (the liver doesn’t regenerate or ‘fight back’ as effectively as the body ages). So, it may not be the case that there’s 15 years between each stage of liver deterioration. You also need to consider there is an increased risk of liver cancer the longer the virus is affecting your liver. And there’s also the risk that you might infect someone else through your blood too
There may not be any lasting damage from treatment. And you might be one of the 20% who goes through treatment without any noticeable side-effects, so it may not be 48 weeks of misery. (I wouldn’t describe my experience that way.)
If you decide to go for treatment I would strongly recommend you are 100% committed to doing it - or wait until you are absolutely dedicated to doing it. I am certain that commitment and determination are really important in getting through the treatment.
Wishing you well in whatever you decide
Ron
August 28th, 2007 at 2:36 pm
I am 57,geno 1a/1b compensated cirrhosis.
I have treated five times.
Never became undetectable on the first three.
Did the 48 weeks on fourth attempt and promptly relapsed.
On the fifth occasion I was clear at week seven,but I stopped.The first four attempts were just about tolerable,but the fifth was hell.I cannot find the words to describe how I felt.
That was in March 0f 2007.After three months I began to feel better.
Now perversly I feel great (touch wood).Not only have the treatment symptoms disappeared, but the familar disease malaise also appears to be in remission.I can’t explain why.I can have LFT any time I like,but I haven’t as yet in case it busrts the bubble.I have been told that transplantation would likely come into the frame in 5-10 years.
I have, during treatments been admitted to both a psychiatric ward, and been hospitalised with diarrohea.It was actually fecal incontience.
I believe my hard deciscion to stop in spite of a rather rapid viral response was correct.In total
I have done a total of 140 weeks of interferon.Finally for anyone considering maintaience therapy,there is no evidence in my case that protracted treatment does anything to to slow fibrosis progression.
August 29th, 2007 at 7:38 pm
Hi Simon
In my book you are a treatment hero. That is a hell of a lot of challenges (and interferon) to endure - you must be a very strong guy. Glad to hear you are experiencing some respite from it all at the moment. And sorry to hear the fibrosis progression hasn’t been slowed. There may be something yet which will help - waiting is always the hard part with this HepC.
Wishing you well
Ron
August 31st, 2007 at 1:24 am
n eye on my liver enzymes. I hane been thinking about going through the treatment but now after readind everyones experiences post therapy I don’t know if it is woth it. My body is broken down from having ARDS 2 times I doubt that I would live through it anyway Sharon
September 11th, 2007 at 7:28 pm
Hi Sharon
It does sound like you have been through tough times. So many of us seem to have been with this HepC.
I hope you and your doctor can talk through all the implications of treatment and post treatment so you can make a considered and informed decision before you accept or reject treatment for yourself.
Wishing you well
Ron
August 26th, 2008 at 7:36 pm
My husband finished 48 weeks of treatment in July 2005.
He is HEP C clear, however continues to struggle with depression, anxiety and muscle pain. I would love to know if this ever gets better. We are both frustrated and have tried many ways to address the depression/anxiety without any real relief. If anyone has ideas or experiences that they found helpful we would love to know.
We are grateful that the treatment worked but it’s hard to live with the side effects.
Tammy