Hi everyone,

I am new to this but really wanted to know if anyone has had side effects from Interferon well after treatment for Hep C ?

I contracted Hep C when i was 8yrs old through contaimnated factor when i was first diagnosed with Haemophillia.

That was back in 1978 and was diagnosed i had Hep C in 1994.

I went through treatment for a year and got rid of the virus but once i finished it returned.

During treatment it was pure hell as others know but the symptons of depression & ocassional feeling like i was coming down with the flu still remain ?

I had treatment back in 2004 ! and i am very concerned that the treatment has done something to me mentaly ?

I never suffered with depression before the treatment began.

I have never felt the same again after going through my year of treatment.

The symptons i am feeling are the same as i felt on the treatment with interferon.

Does anyone have a similar experince ?

Gg

 Gg1,

sorry to hear that you are still feeling the effects of the Interferon.

I am on my second course of Interferon and Ribavirin - the first was 99/00 pre-transplant and the second started a year ago following my second transplant. Sorry to say this, but I have found that the Interefron really screws you up - I'm sorry that I cannot find any nicer way of saying it, but it really does.

I can't say that I felt any long term effects after the first course of treatment which stopped just before the first liver. As I am still on the Interferon now , again I can't really say about longer term effects. I know that from time to time I do feel incredibly down, and this is not part of my normal make-up. Apparently I am prone to mood swings as well,but I don't recognise that.

The only thing that I can say is that life on Interferon is better than the alternative, for me. Without it, the Hep C would have been wrecking the 2nd transplant and as I have been advised that there won't be another, the final outcome wouldn't be hard to see. I live in hope that the drug companies are in the process of developing a proper cure for Hep C and that they do this before too much damage is caused. It always seems to be 5 years away according to the docs !!

I am sure you know this , so sorry for saying the bleedingly obvious, but if you can manage on the Interferon, I would say that is much more preferable than the alternative. If you stop taking it and the Hep C returns, as I understand it, it will only lead to one thing. If you can avoid a transplant ( assuming you would fulfill the criteria) I would do so. Whilst they have been life savers for me, I would have prefered not to have had to go thru it - I found the stresses of being on the waiting list unbearable. The long term implications of a transplant are also huge.

Basically, if you can stick with the Interefron I would - this is a lay person's view but the alternatives are much more complicated ( in my humble opinion). Presumably you have spoken with your docs about how you are feeling - mine prescribed some happy pills, which I have resisted taking as I'm on enough tablets/injections already !!

Its easy to say keep your chin up, but be aware, there are many people who are out there who face similar situations - you are not on your own.

Keep well. All the best.

Mike

Dear Gg , its not just you i feel compleatly the same as you , im struggling on a day to day bases ,very little energy , depression, aches and pains in most areas all of the time, lots of headaches,and just an overwellman feeling of feeling crap every day, HCV since Dec 1981 from contaminated factor ,but was only told late 2006 relapsed after TX late 2007 ,never been the same since , and im sure the DRs at the Haemophilia centre think im making it up ,so im glad you posted your experience,   so Gg if you find any cure for your symptons please post them only im struggling here ,but will be telling my GP again on thursday, im afraid she might say its just the symptons of Hep C and if thats the case how do i get on some sort of new trials for HCV as i feel i can't carry on like this. all the best Alfies Dad

HI THERE THIS IS MY FIRST POSTING.

I WAS ON THE INTER AND RIBO BACK IN 2004.

IT WAS THE WORST I HAVE EVER FELT IN MY INTIRE LIFE, I FELT LIKE COMMITING SUICIDE, I EVEN CONTIMPLATED JUMPING OUT OF WINDOW!  BUT AT THAT POINT I JUST DROVE TO THE HOSPITAL AND CHECKED MYSELF IN.  I DIDNT CLEAR THE INFECTION BUT KNEW I HAD TO GET OFF THE STUFF.  I HAVE FOUND IT STRANGE, THAT I HAVE TYPE A STRAIN HCV, BUT MY LEVELS HAVE JUST BEEN ABOVE NORMAL.  NOT GOOD TO HERE THAT THERE ARE ALOT OF PEOPLE WORSE THAN MYSELF WHEN I GOT IT BACK IN 1985 ISH.

BUT JUST TO LET YOU KNOW  THAT I ALWAYS FEEL WORRIED BUT FROM A YOUNG AGE I HAVE LEARNED OR TAUGHT MYSELF JUST TO RELAX. IT MAY NOT HELP!  BUT GIVING UP WITHOUT TRYING ISN.T THE BEST THING TO DO EVER. EVEN WITH ME HAVING X-MAS DISEASE ASWELL

PEACE

Dear all

I am sorry to hear that so many of you still are having such a negative experience with those who are supposed to support us . As someone who has had overt Hepatitis symptoms since I was 15 ( back in 1980 ) and who was among the first to trial a treatment ( interferon ) for this infection is amazes me that there is so little honesty in the way options on treatment, the impact of treatment and the true value of treatment are being presented .

I had an appointment with a neurologist recently to assess my problems with peripheral neuropathy ( loss of feeling in my hands and legs ), the consultant told me that PROGRESSIVE PORIFERIAL NEUROPHATHY is a common side effect of hepatitis C, so like the symptoms I have described to my Haematologist for decades it has joined the list of problems I experience daily that has been treatment caused and my doctors up to this one chose to keep me in the dark about .

The medical profession or more accurately the Haematologist’s seem determined to ignore the true price we are paying for their folly and as a result make it easy for government to understate our needs .

This however is not a single experience try this fact when you next see your doctors ; In research on post treatment Hepatitis C victims who were PCR negative on blood test in Spain, Liver biopsy samples were taken and on testing it was found that 97% of samples contained active Hepatitis C virus . So to state that any form of anti-viral therapy currently used to treat Hepatitis C can cure it is at best miss-leading .

All combination therapy offers is the hope of slowing the disease and even that is debatable as there are no long term studies to back that up, and with-out long term follow up Fibro scans ( Alt testing again can be miss-leading ) we are pining hope on their wishful thinking and submitting ourselves to yet another poorly run medical experiment .

I have supposedly been cured for nearly 15 years but it has not stopped my health from rapidly declining but then as a Haemophiliac why should I expect anything else, Lied too all my life and lets face it if the Hepatitis doesn’t make me sick it could be a number of other diseases, which touches on my last point . The premise for treatment is that you have one or two active viruses but if you are a Haemophiliac you have a lot more than that, the Factors were dirty contaminated with the disease potential of thousands, with that in mind it is just as likely that continued attempts to make us better might actually be making us worse .

So ask yourself this will being treated make things better or worse !

Thanks VB that doe's give me food for thorght, and i 100% understand what your saying, it just feels im in a deep dark hole and i cant climbe out of it,    one more thing, does anyone else feel that they hold 1 or 2 of there own old DRs responcerble for infecting them.  Alfies Dad

Hi VB, & Queenie,

I feel the same as you both and I'm also a heamo A hep c and all that, Also i have the same symptoms as you and my hands and feet are the same my artery are closing up in both of my legs due to a high acid in my blood from my liver, I feel that some days i just cannot move i just have no energy to move and feel like busting in to tears for no reason, The Dr just keep saying that they don't know why and fobbing me off, I know that when i was infected in 1990 my life changed for the worst and lets face it I'm on my own. The cowards who have done this know that this calculated risk has gone very very wrong but cannot emit to there mistakes because they have our best interest , More like they have there best interest and after inning there pockets even more they just have not got the balls to  sort this mess out. I feel that we should put pressure on the Hospitals more than the DOH if everyone issued writs it might make the Government sit up and do something who knows, I'm just so fed up of not knowing what the hells going on and just running around in circles. This is one for you all i had a letter from Gillian DOH saying that we have set up a special care program for hemophiliac and we are getting the best help ever, so when i phoned i ask to speak to Gillian but as she is a minister she did not speak to the likes of us as i would have to talk to one of her pa's i ask where i could find this special care and for one hour we went through all the paper work and web sites that Gillian had put in the letter, after the hour we kept coming back to the same place with no sign of the special care program the special care dose not exist and the recommendations are not there as well. so nothing has changed and we all are still going around in circles like we have for the last twenty years. Until we sit down at No 10 and have a proper meeting nothing will change and we will not go anywhere, And I'm sure of this. Pressure on the Dr's and a meeting is the only way we will ever get anywhere.

Sorry to be so negative but thats the facts......

 Alfie's Dad,

sure do feel the same way. Unfortunately the doc who changed me from Cryo to Factor VIII has long since left and my records are far from complete.

The really annoying thing is that as a mild haemophiliac, I could have been treated with DDAVP on the rare occassions that I needed treatment. I'd never heard of this treatment until I went to University in Newcastle and registered with the centre at the RVI. They said that this should have been the first option for treatment, avoiding the need for blood product. How did my haematologist not know about ( or not recommend) this treatment ?

Anyway, chin up. They'll soon all be back in Westminster so we'll have something to aim or anger, passion and search for justice at.

All the best,

Mike   

Hi Mike ,

I'm moderate so i could have had DDVAP to . To me this is negalance as my infection could have been avoided as well when i had my wisdom tooth out i asked and asked if it was safe and the Dr said he would give it to his own daughter but i guess the old stock was infected. Its strange that the DOH have changed the goal posts by now saying the blood was safe after 1991 and not 70's & 80's and the contamination was in the old days up to 1980 and now 90's Full of crap the lot of them from Dr's to Ministers i don't trust any of them  !!!!! All i want is straight answers and someone to look me in the eyes and mean it by saying sorry, And they don't have the back bone or courage to do that. We have been treated just the same as a consertration camp in the second world war, Told lies had studies on us secret study treatment without our consent and fed bull shit and kept in the dark controlled and manipulated to how they want. This is not honorable members of parliament, this is like ss solders. I have had about as much as i can take and when i'm down all i can say is Don't get in my way !