Cuteus Congradulations on finishing tx. Having a great attitude means everything. Susan thanks for the encouragement. I know I'll get through this.
I guess I need to slow down a little. When I got those awful pains last night, it was just a reminder that I don't have to do it all in one day. LOL! ((((( Sue )))))
Wow! you were able to do ALL that? no rough start for sure.
like Honey says; good days and bad as with everything. with my trip with pegasys i found that, using the wong-baker scale for pain;
http://www.mamc.amedd.army.mil/Clinical/standards/pain_pro.htm,
most of my days fell between 4 and 6, sometimes a 7, almost never above an eight, and never a 0. post tx, I would say I hover between 0 and 4, most days on the lower scale. energy is up and outlook on life much better after 18 months of tx. it will take a lot of pushing yourself to finish, but it can be done, of course.
I almost don't remember how I actually felt, akin to not remembering labor pain, you know it was there, but can't recall how it felt!
good luck
Oh my goodness....I fully retract my earlier statement about a "rough start." It sounds like you accomplished more yesterday than I did -- and I wasn't dealing with half the challenges that you were! Your determination and attitude are great, Sue. You'll get through this. No doubt about it.
Susan
Honey, Susan;
Thank you both for your concern. I really don't consider this a rough start though. I was actually preparing for it to be much worse than this. The first couple of days things weren't bad at all. But yesterday, I was on my feet most of the day. I think that could have stirred things up.
What can you do though, when your kids have Orthodontic appointments and Girl scout meetings. I also grocery shopped, did laundry, walked the dogs, come to think of it, since I wasn't feeling bad at all, maybe I over did it, just a bit? The pain is calming down now. I am going to be a couch potato all weekend. Ha! Might need to change my A type personality for tx.
Yes, Susan, I have a full support system > very knowlegeable caring doctors, a great husband, fantastic children, and lots of friends & family to be cheer leaders & prayer partners. I know I can do this > With God all things are possible. Thanks again (((( Sue ))))
Hi Kim,,,Love it....Yep that dragon is trembling because I know this past year,,,I beat him and shook him up! Thanks for so much you offer to us and I always get a laugh at some of the lyrics because so true! Hope you are feeling much better these days!
Sue,,congrats for off and running,,,I know its hard and some days are worse then others. I really don't know much about the cryo and glad you are getting with Twotells as he is an expert and has much to offer on that subject! I just know my first couple of weeks were the roughest and then it leveled out so don't get too discouraged to quickly. Besides,,,you are in pain because that medicine is killing all those little boogers you have in your bloodstream,,,,Sooooooo,,,,,"Bring It On",,,Because you will be the winner! Hope tomorrow and the days after bring you less sides!
Wow...what a rough start. I'm sorry it didn't go more smoothly for you. As you know, I haven't personally experienced treatment yet, so I can't offer much practical advice. But TnHepGuy's suggestion sounds like it's worth checking out. I've also noticed that many people seem to have a rocky beginning and then things level out. I'm sure that will be true in your case, too.
The good thing is, you're off and running! You've taken the first few steps of a journey that will lead to your healing. There will certainly be rough days ahead, but every day is one day closer to the end of treatment and the start of your new life without HCV. You'll get through this, Sue. I can tell that you're a very strong woman. And you have a supportive husband to help you when you're not feeling so strong. That's a winning combination!
Hang in there and please remember that we're all rooting for you! Keep us posted when you can.
Susan
No, we have never discussed that paticular drug. My doctor feels that if I clear the Hep C more then likely the cryo will also clear up. I might be doing 18 months because I am 1A and 55 million load. ( depends on when I clear I guess ) I am always open to suggestions though. Thank you.
I did e-mail twotells about his type of tx. He explained how his hepatologist and his hematologist combined the Peg tx with this other drug. Yes, he had a huge reversal of cryo.
If it doesn't clear up in a few days I am going to call my nurse. I am praying & believing it's just another bump in the road. I've had these flare ups before, but it's been a while since they were this bad. Thanks again, Sue
Have you discussed with your doctor(s) the possibility of taking Rituxin for your cryo? 'Twotells' here at MedHelp has experienced drmatic reversal of his cryo blood numbers since taking it (though I do understand it is rather expensive and would have to be ordered as an 'off-label' usage).
TnHepGuy
Hello Susan;
Thanks for thinking of me! Yes, I did my first shot of Pegasus on Tuesday. The nurse had to walk me through it a couple of times ( I'm not good with needles) Anyway, I should get used to that right? ha!
Six hrs. after the shot I got mild flu like sx. They were about a 2-3 on a scale of 1-10, not too bad at all. The worst sx was a bad headache with vertigo. But I've had vertigo & bad headaches on and off for ten years.
I felt pretty good, up until last night. Then, I started getting shooting, burning, nerve pains all through my legs & my feet. Also felt like some one was sticking me with a pin a various areas of legs.
I have had those type of leg pains in the past, but it's been a while since they have bothered me like this. I think it might have something to do with the cryo. Who knows?
For those of you who don't know me, I am 44, geno 1A viral load 55,967,000 in November. I got a new PCR right before my 1st shot. Hopefully, my viral load will be lower going into this. I also tested positive for cryo and have stage 0-1 liver damage. 20+ year infection. Although my liver is in great shape, I am suffering from damage to my blood vessels and ankle joints. I am mainly tx for cryo, if it weren't for the cryo, I'd wait for better drugs.
We are going to do another PCR about week 4 or 5 and if we don't see a significant drop in the viral load, my doctor will authorize me to take more Pegasus ( providing I can handle it )She is concerned about me being sort of on the small size to start with so, I am not sure how much more she will give me. I will do anything to get rid of this stupid cryo.
God Bless you Susan, and thanks again for thinking of me. I will be fine and I am sure this will work for me. Love Ya, Sue
Sorry Kim for busting in on your thread. Thanks for your song!
_______________
Sue,
Well.....???? Did you do it??? Inquiring minds want to know!
Susan
Wishing all a great weekend With little or no sx..
<a href="http://home.comcast.net/~tzeazas/George-Benson-On-Broadway.mp3">Click on this link to hear the song</a>
http://home.comcast.net/~tzeazas/George-Benson-On-Broadway.mp3
TonyZ