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Avatar universal

Post interferon treatment.

I just completed 11 months of triple therapy ( brocepravir) interferon treatment, and was unsuccessful . This Is the second time in treatment, the 1st time was interferon with riboviran only.  
I'm so depressed, over this no one cares and the post treatment after effects are awful , not to mention now that the liver is raging with the virus again. Everybody just expects you to get on with it all
Because their line of thinking is "well let's face it, you did it to yourself) . My eyesight is really bad now , my joints ache so bad, I look like I've aged 15 years, and have no energy or motivation . Sleep ?? Forget it, and I'm so depressed, I don't like living like this anymore. How do you get past this and what can I do besides the pointless counselling from people who have no idea if what I'm talking about . Can anyone help, I'm really distressed by this, after I received my results after 11 gruelling months of illness to only find out it didn't work , I honestly have had thoughts of ending it.
18 Responses
2059648 tn?1439766665
If your not taking an anti-depressant you might want to ask you doctor for some short term relief.  Xanax seems to be helpful.   It seems to silence the trigger that got you there in the first place.....Heavy Hepatitis C treatment Drugs.  Sleep also helps.  Not getting enough sleep (restful sleep) really erects havoc on your day.   Talk to your doctor and ask for help.
Avatar universal
Donna, I have definitely been where you are "emotionally" I sent you a private note.  There are some amazing people here who have been through a lot. I didn't know that there was a tx when I was diagnosed in late 2014. I was determined to feel better regardless,  I have learned a lot and I'm so very glad that I am still here today. Learning, growing and getting better. I don't know if I am cured,  I just finished tx 1 week ago.  But regardless I know what I have now, I have the support of the wonderful people in this group and I am going to get better, I am getting better, it started with talking to someone who understands. I sent you my phone number if you want to talk.  God bless you!
2059648 tn?1439766665
Please see a doctor and discuss with them how your feeling.  There is help for depression but you have to ask for help.

Please call and get help
Avatar universal
I'm so very sorry that you've had a relapse.  I can only image the frustration and sadness you must feel.  Having to go thru months of treatment and find that it was unsuccessful must be devastating.  You have a right to be angry and upset.
As hard as it may seem now, you must not despair.  If you were able to get thru that particular regimen you must be a strong women.  Honestly I don't know if I could have stuck with it as you have done.  At this point you must not give up.  Take time to grieve and then get yourself back into fighting spirit and move forward to another treatment.  Must tell you there is another strong women on this site who had not reached SVR after 11 treatments.  You are not alone and again I understand your distress.
Please try to look ahead to the future.  The newest treatments are showing huge success.  They have been able to fine tune the newest treatments and those that never could clear the virus are doing so left and right.  The treatment you went thru was considered old school and did not have the same outcomes that we are seeing now.  In fact everyone that I've seen relapse in the last year and retreated are now cured.  You will be one of them I am sure.  I'm asking you to keep the faith and believe that you will be next.  Through life the biggest rewards have come thru facing a conquering adversity.   Meeting life head on is all about what makes you a strong person.
Why not take some time to step back, regroup, and begin again.  As dontworry has said an antidepressent will help should you feel overwhelmed.
We can be your sounding board if you need some encouragement.  Remember you fought the good fight already and you can do it again.  We are all here to help you along the way.
.......Kim
Avatar universal
I truly want to thank everyone for all the support , kind words and above all the understanding . No one but those who go through this really knows the true impact , physically, mentally and emotionally it has on the individuals. There is a massive amount of stigma attached to this as well which makes it hard also.
Thank you all so very very much... Ps has anyone had eyesight problems due to treatment.
Avatar universal
Thank you, thank you thank you each and every one .
747988 tn?1396536878
yes dry eyes and blurred vision-bit of a pain as I'm a photographer.Post treatment help was certainly poor to non existant
I'm so sorry that after all that you relapsed but please do not give up hope,as Livelife says the newer drugs are getting great results.
Avatar universal
Hello, yes at the moment I'm trying to toss up when
The new treatment becomes available here whether
Or not to take it. I have a gene that is resistant
To interferon so I have to make damn sure that
This gene isn't resistant to the newer drugs is and
When they get passed. I can't believe the denial
Of the medical profession when it comes to
Post treatment, there's no help, no support at all.
So bloody negligent in my view, and it's hard on
Family members as well. Your whole life during
Treatment becomes so isolated and confined,
It just becomes all about the treatment, unbelievable .
Then at the end all of that was for nothing , I feel
Like such a failure, complete looser.
1815939 tn?1377991799
I am very sorry that treatment did not work for you (twice). Many on this forum treated and relapsed so people do understand.

The new treatments are not Interferon based. Most people who failed treatment on Interferon are having success with the new treatments (Harvoni and some others).

As far as your current symptoms:

Interferon can affect the eyesight. Have you seen an Opthamologist? If you have not seen an Opthamologist about your eye problems, please see one ASAP. Be sure it is an Opthamologist (NOT an optician or an optometrist). Tell him/her you were on Interferon and Ribavirin and are now having problems with your eyesight.

Please see a Psychiatrist about your Depression. Interferon can cause Depression. Depression can be treated with antidepressants. If you cannot get in to see a Psychiatrist soon, talk with your PCP and see if he/she will prescribe antidepressants for you or get you in to see a Psychiatrist on an urgent basis. Depression may be causing many of your symptoms and, if you can treat the Depression, many of your symptoms may disappear.

Interferon can damage the Thryoid Gland so please have your doctor run a Thyroid panel to see if Interferon has damaged your Thyroid Gland. A damaged Thyroid Gland could cause many of your symptoms.

Also, ask the doctor to check your Vitamin D level. If the Vit D level is low, the Vit D needs to be replaced and your Vit D level brought up to normal. Most people are Vit D deficient. A low Vit D level also negatively affects Hepatitis C treatment.  

It is unclear how long it has been since you finished treatment. Keep in mind that Interferon and Ribavirin can stay in your system for up to 6 months (or longer). So it takes time (months) for the side effects to gradually disappear. It can be a year or two before you get rid of all of the side effects.

If the joint aches and pain and the fatigue continue, please see a Rheumatologist to evaluate you for Autoimmune Disorders. Both Hepatitis C and Interferon can trigger Autoimmune Disorders.

Please get the appropriate help so that you can heal. After you are feeling better, then you can look into the new treatments and treat again. As I stated, the new treatments are very successful and you would most likely be cured with them. They are also much easier to do than the old treatments and have very few side effects (comparatively).

Also, keep in mind, it really does not matter how you got Hep C. The point is, you have it. It is a disease. It needs to be treated without judgement. No one should be judging you or admonishing you over how you got Hep C. If your doctor is doing that to you, then you need to find a new doctor who will be unbiased, treat you with respect, and treat the disease without judgement.

Best of luck.
747988 tn?1396536878
Good advice from Pooh as ever!
I do hope you find someone who will listen and more importantly hear you,I know what a struggle it is to find aftercare of any description post treatment.
Avatar universal
Just echoing what the others have said and also cheering you on...
It is so important to be heard....
Avatar universal
Just echoing what the others have said and also cheering you on...
It is so important to be heard....
Avatar universal
When you see doctors for trt eatment of the side effects and they give you paperwork to fil out as to why you are there, consider always saying "post-interefron syndrome" and explain to them that the particular ailment that they are seeing you for is but one of many that developed post-inf.

I would also consider wriitng the hepatologist or gastro that gave youi the drugs, tell them exactly what happened, and send the letter certified mail asking them to stick it into your medical records.  Otrherwise retroactive reviews will never ascertain what the drugs did to you.  Who goes to a hepatoloigist for newly-developed arthritis?  

It will help those behind us.

It is sad to think, but I believe many people died from treatment, or were incarcerated because of abberant behavior and improper social function, or committed suicide, all problems brought on by treatment, and there is absolutely no suggestion in the records of the physician that treated them that such was the outcome.  How would the Hep C treater ever know?  How would such outcomes get into the records where they might be found by retroactive review?  

BigPharma gets a pass.  
  
Avatar universal
Hey Donna, know that you are probably in the worst of it now.  You may be experiencing depersonalization syndrome, a loss of connection to self.  That is terrifying, I know.  

You'll come back, slowly but surely.  Have to bear it.  

Apply for SSDI if you have the work credits.  Get counseling or mental health treatment and document the symptoms.  

Most importantly, eat foods that ae as non-inflammatory as possible.  Infammation attacks our brains, organs, nerves, everything, post - INF.  Gotta keep it down. It will make your mood much better.  Sounds carzy.  It's true.  The btter you eat, the better you'll feel.  If you believe I am talking Greek, then read "In Defense of Food" first thing and look up "functional medicine."

DO NOT see any doctor who does not acknowledge the power of food.  
Avatar universal
Hi dear, yes I got my vision problem. The doctors said during therapy your vision going to change but don't change the reading glasses it will come back. It didn't ... I have now double vision and they send me to doctor who check if some damage in the brain. She said it's not brain but somehow my eyes not getting right light and it's double, so on I need to wear glasses all the time. I hate it but bought already frame and waiting my doctor from vacation. I got pain in every musle in my body. I got some problems with thyroid, with eating food, I cannot eat bread, eggs, coffee, dairy, fruits. I have constant sour taste in my mouth, I got stone in my ureter, they did now X-ray for my kidney and bladder. I got fybromialgia, they send me to Reumatologist. What can I say.... This treatment ( I had 3 of them) it's just so so so
hard on the body. The only what helps me because I believe one day all my problems will go away. This how I want to think... Otherwise I could get on top of everything just depressed and then what? We have only one life and it's not only roses sometimes it's burbs :) How can I describe how I feel after 1 year and 3 month post treatment for only this who been trough 48 weeks  ribavirin interferon telaprevir - I feel 10 times worse then during the treatment, except telaprevir because it was hell.
Avatar universal
Hi Scottie24 I cannot it most of the food now. It pain in the musles and I feel like my body is so havy. I don't know how long it could take to get better. I am so tired and upset. I start taking some vitamins, I am going to Heropractor , next week I go somebody suggested to me reiki treatment. I am ready to do anything just to get better somehow.
315737 tn?1407298997
I did treatment 3 times, the first two interferon and ribivirin. The last was sovaldi and ribivirin which worked. It was hard hanging in but somehow I did.
Avatar universal
Am so sorry that you are having such a rough time. I think you are going in the right direction with nutrition etc....I am a year and a half post treatment and do struggle but I know that with some us it just takes longer than others. Hang in there and best wishes...
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