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Interferon-Ribavirin support groups

I am a single parent of a beautiful talented daughter, and I was recently diagnosed with HCV positive(chronic). I have the kind of HCV positive(chronic) that does not respond so wellto interferon treatments.

I have choosen to try this Interferon-Ribavirin therapy regardless with hopes of getting better. I start this therapy soon after the new year.I live in Bend,Oregon and feel I need to attend a support group either for Interferon-Ribavirin therapy users or HCV positive(chronic) patients.
Do you  know if there are support groups in my area???? I have very limited resources and no PC of my own, I am using a friends today to contact you. Any advice of help you could offer would be sincerely appreciated!!!

Thank you for your time and consideration,
T./cleanliver
56 Responses
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Avatar universal
Hi I am a recovering addict also I have been drug free for over 30 years and found out that I have hep c. I am on my 2nd treatment, I was on 72 weeks of double treatment, this time the Dr added new med Incevik and I completed the 12 weeks and will be on double treatment for 10 more weeks, I just wanted to share with you that you are lucky that they have the test and meds to treat this problem. I went untreated for 28 yrs as others have also. I noticed this post is 1 year old and hope that your therapy is going well and that you stay positive and thank God that you are young and you are getting 2nd chance,make the most of it! good luck! stay well
Helpful - 0
2029806 tn?1329167845
I used Lexapro after a tragic car accident years ago.  And honestly I didnt do well at all.  I forgot days at a time. and I went from feelings that were over whemling to not having any feelings at all.  I take cymbalta 65 mg now, and it really is alot better, it also helps with some of the pain.  Also just because a Doctor prscribes a medicine for you, you dont have to take it.  if your having proplems with it have them change it.  If they are not willing to listen find a new Doctor, remember this is about you, not them.  I'm on week 7/48 on Friday of the interfreon/ribvatin.  Its been hard but I'm hoping things will get better soon.   Good Luck to you!
Helpful - 0
Avatar universal
I am a new patient just startinting interferon 4 days ago I have had just one bad day so far, any information or personal stories would be appreciated. Thank You !
Helpful - 0
1227909 tn?1267853479
i am a 28 year old female about to start pegasys and ribofavrin for type 1a. i am in college and am hoping to be able to cope with the side eeffects well enough to stay in school. i'm a pretty strong and positive person and will do what i have to do, even if it means holding off on school for a while. my BIG FEAR is that the treatment will cause serious side effects. when i was in active addiction i had given myself a heart murmur. it went away and the EKG test thta my doctor just had me take came up normal, but i'm still really worried. i already have regular fears about my heart and i'm pretty sure it's still pts from my days of using. i read online the side effects of the medication and i'm just really having a lot of fears. i'll be discussing them with my dr. of course but i'd REALLY appreciate any support on not being so afraid of something happening when i start the treatment that will cause me to die. that is my fear and i need help getting past it so i can start this treatment. please, any support.
Helpful - 0
179856 tn?1333547362
Yes Mom people don't realize that you are making a new post in here because if you look at the date it's from 2005 (the year I started back in the dinosaur days of hepc treatment).

If you post a new question (or post) people will see it and respond much quicker. We're just lucky that Vic saw that you were posting on this one and told you what to do.  We don't want you to think we are ignoring you!

You can post all of your questions in one thread and people will be more than happy to help.  Personally my doctor gave me some percocets but it was rather limited because it's not good for your liver to be taking them every four hours - gotta give the stressed out liver the biggest break you can.

Treatment really shouldn't cause you that much unbearable pain.  Most often it's the neupogen that some have to take that causes the severe bone pain.  Otherwise it sounds like you (like me) have a history of back pain and injury - I hope you can find some releif.  Personally painkillers never really did it the more I took the more I needed until I was on them at great amounts.......now I don't take them any longer and find that i have less pain.  Go figure!
GOOD LUCK.
Helpful - 0
1051313 tn?1284780795
Hi Mom,
I am sorry to hear about your suffering.
You might get a quicker response if you post this question on a new topic.  To do this start at the top of this page.  There is a green box that says "Post a Question".  Try asking your question there and it will start a new thread with this topic.  More people will see it that way.
I am sorry I cannot offer you advice to your pain.  I sympathize with you as a mom in treatment also and understand how difficult it can be.  I hope you improve.  I found I had good days and bad days. Try to rest when you can and keep up on your fluids.  The dehydration seems to make everything worse.
I am sure there is someone who understands the pain you are experiences and can help you better than me. I hope you feel better soon !
V
Helpful - 0
1135436 tn?1261532356
Please help any advice?
Helpful - 0
1135436 tn?1261532356
I'm now doing okay with the anxiety and am detoxing off them. Do u think theres any chance he'll give me something to help the pain? It's so unbearable some days.
Helpful - 0
1135436 tn?1261532356
I have written before I am a mom of two young girls. When I first started treatment they had to put me on xanax cause the stress was to much trying to keep up with normal family activities. The whole time my joints have been getting more and more swollen, he has me on celebrex but the pain is so bad! Has anyone ever gotten their doctor for pain meds to help manage the pain. I asked one day and he said try motrin I'm on tramadol for a back injury but nothings helping! I really can't take this pain anymore I tried hot showers, hot pads, bath. I don't even want to move my body hurts so bad! Whta should I do?
Helpful - 0
1135436 tn?1261532356
Thats so awesome Congads and good luck!!! I myself can't wait to say that and then it's on too a healthier no pill to take me! LOL!
Helpful - 0
Avatar universal
Whoo hoo! You are on your wayy!!!!!!~MM
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Avatar universal
I just want to post this to say that I have been on my treatment for Hepatitis c virus now for 8 weeks and the doctor told me that my blood does not show any signs of the virus. I am still on the treatment though. I have to finish it I have 4 months to go.
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1135436 tn?1261532356
Wow! I guess I'm really not alone. It's great to have this site. Everything everyone said is exactly how I've been feeling. Today was a better day though I still feel alot of anxiety, confusion, and I always set my standards to high but it's getting easier to deal with day by day. I just can't wait to be back in my own mind and body... but healthy. You are all so awesome. Thank you!((HUGS)))
Helpful - 0
691935 tn?1421027090
This is a strange post - starting in "2005."  I guess at this point we are responding to Mom's post of December 11, 2009 ??
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Avatar universal
Hi Mom!
Listen, it may be just the meds giving you a nasty race, but the interferon can freak out your thyroid and heart, and can cause panic attacks, chest pain, rapidly worsening anemia, very rapid heart rates, and spiked blood pressures. If you continue having panic attacks, can't sleep, and heart palpitations, get in immediately to your Dr and have your thyroid levels checked. (You'll want your TSH, Free T-3 and Free T-4 levels.) It's rare, but thyroiditis (hyperthyroidism caused by an inflamed thyroid) can cause a thyroid storm (can be fatal if not treated) which can cause a heart attack or a stroke. Check your pulse rate after laying quietly for several minutes. If it is over 100 while at rest, you need to be seen. (Like we need one more thing to worry about, eh?) If it isn't your thyroid creating the problems, you just do treatment one day at a time (sometimes one hour at a time..) Let others help and don't try to do everything yourself. Housekeeping will get done eventually. During treatment, the most difficult lesson I had to learn was to slow down and ask for help when I needed it. I was always the one who took care of everyone else and it was a hard pill for me to swallow..Do what you can when you can, pace yourself, and rest as much as you need to. ((((((((((((((((((HUGZ)))))))))))))))) ~MM
Helpful - 0
67573 tn?1261282690
Good luck to you.
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Avatar universal
You are not alone on this board although I know how isolating it was on treatment. It is key to remember and keep telling yourself that it is the drugs doing this to you and it is not you. I would imagine floating outside of my own body and watching me like I was on TV - sometimes it would make me laugh. Also, yoga and breathing helped me through the panic attacks. Of course, anti-anxiety meds like ativan came in handy when things got really bad. Sending a big hug your way,

Joey
Helpful - 0
1135436 tn?1261532356
Thank you so much for all the responses! It helped just by that. I know somedays are better than others. I feel like I am the glue that holds my family togehter and lately I feel like I'm falling apart. Today was a horrible day and my therapist has been using me as a guinea pig and I dont like. it see my gasterologist put me on lexapro which made me more depressed, then see gave me xanax which help but not enough than she gave klonopin and I had horrible memory lose I forgot my whole day! Xanax 1mg seemed to help but I had to go to the emergency room to get help. I feel better now just knowing I am not alone! Thank you so much! I know now I am noy alnoe!
Helpful - 0
1135436 tn?1261532356
I've been on intreferon for 1 1/2 monthes now. At first it felt fine I was happy to be getting heathier! Now I wake up everyday I feel like I was in a horrrible car accident and I have a 1 1/2 and 2 1/2 year old yelling at my they are hungry. I look at the eggs and want to puke half the time if I can I eat rice cakes, other days nothing at all till I wake up every night faithfully at 4 am and have some appitite. I have atleast 2 panic attacks every day and have no support! After 1 1/2 mnth I am already undetectable but feel so alone! Please someone say they understand!
Helpful - 0
1051313 tn?1284780795
It is hard but I am in my 36th week of treatment and for me it did get a little easier.  It was the worst in the beginning. The 4-6 months were hard.
You should talk to your Dr. to check for low red blood count (anemia) and anti-depressants. A lot of people used them although I'm not.  Remember, there are good days and bad days. Try to look at as a season and life and that it does have an end.
I STRONGLY recommend drinking a ton of water, it really does make a difference, and not to fight the fatigue too much.  I know that it is really hard with kids and we are used to doing everything tired or not.  But this is a different kind of tired.  Lay down when you really have to.  I found that when I keep pushing myself when I felt bad and tired I always end up "losing it".  Your kids just want to see you well.  
I kinda live in my bed. When I feel good i try to do as much as I can.
Post a new topic and you will see just how much support you have here.
We all get it and want to encourage one another. Also there are a lot of people here with good medical and practical knowledge that can help.
You will be o.k.
Vic
Helpful - 0
971268 tn?1253200799
It does get easier for some people, you can't really predict how you will respond to the treatment. But I agree with jusjames, if you're having strong anxiety attacks and irritability you might want to ask your doctor to prescribe you some antidepressants, they might help you out. The no energy thing -- well, that's pretty much par for the course, sorry to say.  But you will likely have some good days where you're not as tired.

This board is a great place to come for support and advice. Most of the people on here have either done the treatment, will do it, or know someone who has.  So make a new post whenever you feel like it and you'll get responses.  You are not alone!
Helpful - 0
1117750 tn?1307386569
sounds like depression get some anti depressants, theres no shame it is a tough experiance, its normal to feel bad these are heavy drugs your on
Helpful - 0
1135436 tn?1261532356
I started my treatment 5 weeks ago at first I felt great I had no side effects at all. I'm basically a single mom of two with no help. And have now started having stronge anxiety attacks, irritability, no energy, and simply feel like I've been hit by a train! I dont want to move everything hurts I'm on 24 and feel like I'm 75!  WILL IT GET EASIER? Please just some one to talk to it's like no one understands!
Helpful - 0
Avatar universal
If you are using drugs and alcohol there is very little point in treating for HCV, and if your doctor knows you are not clean he/she should be hesitant to put you on tx.  

When you begin taking treatment drugs you will have to be faithful about complying with the treatment regimen, exen though you feel awful and would rather not take your meds on any given day.  Are you prepared to do this?  Treatment can be very difficult and if you are not going to see it through then why start?  

I suggest that you speak to your doctor and come clean about you drug use.  Get his or her opinion about treating while using drugs.

Grow up.  Get a job and you won't be alone on Fridays - you will be at work.
Helpful - 0
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