new to this forum

[franke566]

I am just wondering if I am doing something wrong because I've posted questions several times and have yet to get a single reply.  Could somebody just say hello?  So I know I am in the forum?  Thanks. franke566

[franke566]

You are so right! also it was so nice of you to mention the sun-I forgot about that completely. I live at S Padre island, Tx across from Port Isabel and learned the hard way.
Your post will help alot of people,

[nygirl7]

figured the Wright site was alot of hype to get people to buy his product-now

Yup it's unbelievable the amount of 'snake oil salesmen' that are out there just looking to take advantage of people with a disease.  I really wish that the government would do something about it but in the day of the internet I guess it's almost impossible.  

This forum was a lifesaver for me too. I felt very alone because most people don't know what you have going on cause you LOOK fine and then the people that do - well they try but they still just don't understand how difficult it is.

Here at least you know when you say something...........guaranteed there are a ton of people who chime in Oh God me too.  Somehow - that helps :)

[franke566]

thanks.  I wish I had known of this site several years ago.  It is way cool that your doctor is open to this forum.  I saw my Pulmonologist yesterday for the 1st time since I had a bout with pneumonia last month and she read the list of all the meds I'm on and hit the ceiling because of Lyrica which my Neurologist just prescribed for Fibromyalgia.  She said: Oh no, you have the side effects from the Interferon and the Lyrica will not help you!
This is pretty much what I get from having so many doctors all doing something else-but at least she is the first Medical Doctor other than my Psychologist who has admitted that Interferon can rarely cause so many other problems.  I remember getting a bunch of testimonials from Lloyd Wrights site and taking them to my Neurologist about 3 years ago and he just sneered at me and wouldn't even look at them.  I am happy you are so up-beat-sorry about your thyroid though.  This forum has gotten me out of bed and back to fighting.  I've been so down because I thought I was alone.  I figured the Wright site was alot of hype to get people to buy his product-now I know I am in good company with folks who are looking for answers and I want to stop feeling sorry for myself and start moving around, go outside.  Franke566

[nygirl7]

Sorry I never saw your post in the first place (generally I post from work and only can scan several times a day and miss alot of night time stuff).

I completed 72 weeks of pretty high dose treatment about two years ago and have been SVR (cured) since then.  Aside from a few autoimmune problems (the interferon destroyed my thyroid because I was on it for so long) I think I'm pretty darn back to normal. Except older.....five years ago I started the voyage and well its hard to tell what is age and what was treatment.

I guess there are pains and aches and the thyroid and stuff that I can say were the result of treatment but for me I didn't think at stage 3 there was much of an option.

"I'm not going to give up and I will continue to ask questions.  In just two days I've learned alot from this forum"

This forum probably saved my life. Aside from the comradery and compassion and understanding when i just felt like **** and wanted to cry - they taught me that I was more knowledgable than my own doctor is and in turn HE learned from this forum.

Now that's pretty cool.

[franke566]

Thanks, yes I am learning to be more sensitive and including:" my case is not the norm-rare is the term I use"  My greatest help has been thru my Psychologist. I met him in the middle of treatment and he asked how I was doing and I said I am dying and he said we all are!  He has a PHD and is no nonsense.  Very straight forward.  He told me, after I said my doctors said it is all in my head, that they are right, it is,  Interferon damages and re-arranges neurons in your head and sometimes this triggers all kinds of real symptoms-all bad.  Some go away with time some never do-rarely, but thats just the way it is.  I see him twice a month and I always leave feeling a little better-for a few hours.  I have been practicing non-physical yoga and am studying cognitive thinking:
We are what we think.  All that we are arises with our thoughts-Dhammapada.  I'm not going to give up and I will continue to ask questions.  In just two days I've learned alot from this forum.  It has gotten me out of bed; given me new questions to ask of my doctors but mostly it has shown me that complete strangers can reach out to one another for help and to help...wonderful.

[GSDgirl]

Hi, many times people don't really talk about after effects because they don't want to scare or discourage people from treating.  I am one year post and have felt like heII, joint & muscle pain like crazy.  Those problems are better than the fatigue and cycles of puking for a year. The puking turned out to be gastritis and maybe the fatigue was depression per the doctor, I don't believe that tho cause he also said the pains were from depression.

All in all I prefer this and to be clear of the virus.  This is nothing compared to how I felt before treating.  If you get any answers please let us know.

Denise

[merryBe]

hi there guy, sorry if you got no response...that isn't usually the case...but good for standing up for you.

there's a lot to learn in here, if you up to the health pages link at the top right of this forum you can click on it and learn about lots of topics, but for starters many recommend going to janis...

at www.janis7hepc.org

a lot of intoductory material is there about the disease, labs, biopsies and all that the disease entails. You'd do well to start there, then return and ask question, in here, and of your doctor.

welcome to the forum, although sorry you have HCV...makes coming in here a mixed blessing....good to get educated, but not the group any of us wanted to be members of.

anyway hang in there,

merrybe

[franke566]

Bethmm,  portann, GreatBird, chprchk , rcm829, I believe I now understand why.  I am nearly 4 years post Tx and many of you are either in Tx or just out of it or just about to go in.  I really believe I would have taken the treatment even if I had been told up front there could be LASTING side effects because I was told if I didn't my liver had less than five years left.  Now having said that I went to some other threads and listened to some scary stuff and some people taking cheap shots at people like me, who are looking for answers not a forum to B****,  Today I am going to try and sit in my yard for the first time in many months just because of this forum and knowing I am not alone after all.
so thanks to all of you who took the time to comment.

[portann]

Try this for starters:

http://www.medhelp.org/health_pages/Hepatitis/Members-Comment-on-Side-Effects-of-the-Treatment-Drugs-During--After-Treatment-/show/530?cid=64

[GreatBird]

Good luck starting tx tomorrow! Drink loads of water and take your Tylenol with shot. That's my best advice.

As to how I became GreatBird . . . it's a Star Trek thing. They called Roddenberry the "greatbird of the galaxy."

[choprchk]

Great advice Greatbird, is that how you got your name?  hahahaha  Franke566, I saw your post too and apologize for not responding, I'm fairly new to the site too. I find it just as helpful to just read all the information that these people have already shared on this site.  I do a great deal of that....I posted a couple times, got the same reaction but it's okay, I just read-on.... :)  Hang in there...I start tx tomorrow.  I love this site!!!!!

[RCM829]

I've noticed that  questions  that have been answered -or debated upon- several times previously are not answered quite as enthusiastically.  There's a good reason for this and you shouldn't take it personally. If you start researching previous threads, you'll see what I mean.
I'm still in treatment so I know little about post tx side effects. Best of luck to you.

[Bethmm]

It will be interesting to track how many of us have  issues, what they are specifically, when they began after tx. what our tx's were, how long they lasted, our genotypes, etc.
I wish someone would research this. It appears that we have similar complaints. I can say it wouldn't have changed my decision for Tx. I would have done it anyway. However it would validate my experience. Also I would like to receive proper tx for the issues I am experiencing now.
Thursday I will be going to a Neuro who specifically deals with peripheral neruopathy. I will report back what he has to say, we'll see if he will talk to me about the pegintron ribavarin having any impact, I doubt if he will acknowledge the situation as a possible cause.

[GreatBird]

There have been a lot of people who have posted here about post tx side effects. Not all of the people come back often. You might try using the "search this community" box just to see what you come up with. Certainly joint pain is something that is often mentioned.

I am also in the middle of tx, so my complaints are different for now. :)

[franke566]

Thank you!  

[franke566]

Thank you so much.  I will get the hang of it.  Really appreciate this site.  I am trying to find about othere peoples side effects after treatment with Interferon.  Mine never left.  In fact they have progressively gotten worse.  Not sobbing just looking for some input or direction to any studies being done.  Thanks again for letting me know I am being read.
franke566

[Tippyclubb]

Sorry you are experiencing post treatment problems.  I read your original post but did not reply because I am not done with treatment so had feedback for you.  That's probably why people did not reply as many of us are doing tx now.  I am sure someone who is done with treatment and having difficulties will reply.  Yes, you are on in the forum

[newleaf09]

Well this one got through.  When I originally signed up the site had a password glitch and I couldn't post.  I emailed them directly and they fixed it.

[GreatBird]

Hello!

Did you post your questions as questions or attach them at the end of a bunch of comments to someone else's questions? Sometimes when that happens they don't get noticed.