strange news ? - use for other posts

[iceboy]

Hello all.

It’s been a long time since I visited the site. it all became a bit to much for me and I crawled into my shell. As some of you might remember I had a rocky ride, and my battle with anemia was long and the only thing they could do was to take me off the drugs. I was totally off ribavirin for 6 weeks and only on 90mg interferon for that time (apart from 2 weeks). My blood levels finally came up to around 10 and I started again on 600mg ribavirin and 180mg interferon. In my mind it was all lost and I didn’t know why I was bothering taking the drugs having all those side effects with so little chance that it would work. Guess what, on my 3 month PCR I was less than 600. They don’t have more sensitive test up here, so the next thing is probably asking for a qualitative test!!! I know I’m not out of the woods yet, but I think this is remarkable. What do you recon? and - How are all of you doing

all the best

[Dale_Ray]

I'm assuming it dropped significantly over that period? Dale

[FlGuy]

great news. My guess is that if you are less than 600 3 months post that you should have expectations of another clear pcr in another 3 months. My therory is that if you had relapsed the VL would have been higher that 600.  What geno, VL, length of tx were you?

[iceboy]

started with VL 1200000. 4 week PCR was 4000 and they took me off the drugs at 7 weeks. Im now at week 18

[Mister beagle bailey]

Finally your back.  I'm so glad your PCR was good, I'm awaiting my results and should be in on Fri. As you and I both have Thalassemia I know what you have been going through and that it has not been easy.  I had a blood trasfusion 2 weeks ago and feeling great at the moment, but it did allow me to stay on full meds.  I have 11 shots left nd counting.  Will get another 60,000 units of procrit today and find out my HGB.  Wow 3 months on again for you, it went fast and I hold your anemia is under control.  Please keep posting as you a big part of this forum my friend.

Beagle

[iceboy]

Im geno 1B. Had it for 23years. 42 year old

[beamishboy]

hey great News!!!! wondered about you & your struggle,but decided not to 'keep' asking cause i sorta thot things had ended badly-sometimes best to let sleeping dogs alone...I am so happy that you were able to continue at lowered dosage and IT Worked!! THANKS for SHARING and KEEP POSTING!!!!!!!!!!!!!!

[FlGuy]

I misread your post and thought you were post tx. As a geno 2 are you and the doc going for 24 weeks?

[NYgirl]

I remember you!

You know the thing that got me THROUGH the anemia was a constant reminder to myself that it was TEMPORARY and would be FIXED with the Epogen. I'm so glad I didn't stop at week 4 and 12 I was at about 400 copies and then at week 24 I was FINALLY UND.

It was worth it battling that anemia - and God I know how absolutely horrible that REALLY can be. I'm so sorry that you had to go through it too but it sounds like you are winning...and that is worth it all!

[sunspot]

It's good to hear from you again. And with such great news. Stay on the path and win this battle.

Dana

[cuteus]

it does sound good that you did not experience a viral breakthrough during the underdosing period, and it might still work for you at the end of 48 wks, miracles do happen!
As a geno one and with all the dose reductions, you still have lowered chances at SVR, but since you have been so sensitive to the medications, perhaps it has been enough for you.
Is there any possibilities that they might extend your tx a bit? They never did give you Procrit, did they? That is unfortunate, indeed. See if you can have them prescribed it, show them the study that shows increased SVR rates if Procrit is used from the begining of tx. You have a good chance since you are a responder to tx.
good luck in your quest

[dyce]

Ice, thanks for posting, I was wondering what happened to you. Thats terrific news and hopfully you'll sustain your undetectable status. That was quit a jolt the meds put on the hcv, very encouraging to hear it can work even when doses are reduced. I'd ask the doc about procrit, it can only help you.

Beagel, good morning, my fingers are crossed waiting for your pcr results. When you come back undetectable it will all be worth your efforts. Got nausea today, this riba seems to be workin on me petty good, I had a cbc drawn last thursday and if the hmg is droppin we'll know today or tomarrow. Hope your good today,
      Dyce

[iceboy]

Hey NY girl. Thats great news. I remember well when you got the 3month pcr.

I do get procrit, but it´s limited help. It only keeps me at hgb 10. Thats why they won´t allow me to take more riba.(in a way Im glad, because I suffer terribly from the sides)

Kailo, you are right. better keep the expectations realistic.

Beagel - great seeing that you are doing OK. so you got transfusion. I guess we are complicated cases with this thalassemia to deal with. You started on procrit on week 2, didn´t you.

I have been dragging my self out to do some work every now and then, but I cant build up any stamina. I work for few days and stay in bed for few days because something happens. Im in bed now because I did my back in!

It´s lovely to see all you friendly faces

[MissMiss]

Congrats on some good news.

Curious how much procrit you are getting.  They have me on 80 per week and I can't seem to get above 11ish.  Like you, I seem to need to just lay around.  Can't do the physical work I used to and miss the money.  I feel like what I am feeling is more than just anemia.  Gonna ask today if they can check the B stores like some here have suggested.  

Good luck to you.  Temporary, remember.

miss

[LvdByGod]

hey iceboy, that is just fantastic news... you seem to be beating the odds and that is so awesome!!!  you are definately on the right track now... i pray you stay clear forever!!!

Hip Hip Horray!!!

sandi

[jmjm530]

Good to hear from you!

A more sensitive test might be in order, but based on your greater than 2-log drop at week 4, my guess is your're legitimately non-detectible. But given your situation, it might make sense to increase the frequency of viral load tests every couple of months to monitor things.

As your doctors have probably explained, a certain percentage of people do suppress the virus with Peg alone (monotherapy) but the relapse rate is higher. That's why it's important to stay on as high a dose of Peg and Riba as you can tolerate safely for as much of the treatment duration. If you're not on Procrit, something to talk to the docs about. Not sure why they reduced your Peg, but it was low WBC/ANC, then the drug we use here is Neupogen.

All the best.

-- Jim

[iceboy]

It´s a diffrent type of EPO I get over here. I get 180 micrograms (0,3 ml) of darbepoetin Alfa. That is maximum amount allowed.

remember, the sides just on their own without the anemia knocks the want and the will out of you.

all the best

[iceboy]

Hey Jim. great to see you. are you done!!! are we there yet!!!! tell me....

for some reason, the docs concluded that the peg was also causing the anemia as I did not butt from just under 7 even though I was off the riba and on a large epo (sounds like somthing you get at starbucks)(with skimmed milk) I did not make any signs of making any new netcells. as soon as they took me off the peg for couple of weeks I started to make the cells and volla, at least now I have some reason to try to finish the course to my best ability....

[NYgirl]

I have to say although for example I just fell asleep at lunch time for like 20 minutes because I am TIRED - yeah the sides aren't always great but NOTHING like the anemia was. When it went down from 15 - 9 in about a week it was ATROCIOUS the worst thing I ever felt in my life. Worse than broken bones, worse than a broken back! Six points in a week is too much too fast.

Without the epogen I wouldn't have made it. I'm on extra Riba and never cut down at all as hard as it got because I figure the sides are something horrible but the strength to have a transplant - now I'm not sure I have THAT much strength in my body.

It kept me going.

[bobbyullc]

i do 1 mg a day if i do not have to go any place. i still get tired if i miss. it is sooooo much better than methodone for your health. it is also much easier to get.

you are a farm girl then. i love ny,
bobby

[jmjm530]

Yes, I is done! Finished two weeks ago. My doc talked me into extending a little based on age (59) and histology (stage 3), so did 54 weeks total. Starting to feel better already as you will when things finish up. All my best.

-- Jim

[Dale_Ray]

Hey Hippy: fortunately both of my daughters will tackle me and pin me to the floor and explain to me what they will do when I get older if I don't straighten up. Then I get big hugs as a treat. I know it's miserable when you know you shouldn't say it and you feel it coming from your toes upward till its in the air. It's like I have a hair trigger at times and then other things that may be irritating people around me do not even phase me. Guess they need to get the commitment papers ready or something. Dale

[Dale_Ray]

Hey Dyce you said it was documented that tx had improved liver damage by two stages. That is great to know do you remember where you read this or where the information can be found. I hope you get to feeling better and no anemia hits you. My whites went south on me and I hit the wall for several weeks. Misery. Usually if anything goes wacky they just add another SHOT. Oh happy days. Take care of yourself buddy. Dale

[cajunlady]

Iceboy:  
Good to see you post and with good news.  That is just great for you.  Now, you are moving forward. You will beat this dragon. Keep us posted.  I went through an I just don't now period of mood.  Keep it forward and it will work.

Everyone:

Sorry, for jumping thread, but I did not want to open a new one.  I went to hep doc this morning for my 12 pcr and I am    

UNDETECTABLE!!!!! GENO 1B  Starting VL 5,300,000  Stage 2
                  Peg-Intron .05 inject   Rebetol 1200mg (daily)
WE ARE SLAYING DRAGONS !!!!!  WOO HOO

The lab work was sent to Quest. I also left his office with a prescription of Prozac 20mg/once daily; and Ativan .05/2x a day.  I am hoping this will center things for me. My blood seems to be holding steady now; instead of a drop this time; I had a slight increase in #.  This Friday is shot 14/48.

MR> BB:  I know you have your 12 week up just a few days after
         me.  I am glad you got your blood back in order;
         things must be better for you.  DON'T WORRY, you will
         slay the dragon too.  GOOD LUCK!!  Will be waiting to
         read you post then.

cajun

[amirtracy]

Congraulations! that's wonderful news! I'm 6 weeks away from my 12 week pcr but have the same histology as you so YAY! Always wonderful to read wonderful news.  tracy

[cajunlady]

Thanks, It was a long 8 days waiting for results from Quest.  But, was worth the wait.  How are your sx with tx. Hope they are kind.  Are you on same dosage as mine. I found my sx a bit rough at times.  I described them as The Good, The Bad and The Ugly. The last 3 weeks have been much better, except for the anxiety and that should correct with new prescriptions.  Good Luck on your tx and hoping few sx.

cajun

[Mister beagle bailey]

Dyce --sorry your not feeling to good.  have tried lemon drops that's what I was told and it kinda helps. If your HGB drops do you have procrit ready to go.

iceboy-- Yes started procrit week 2 and now take 60,000 units a week.  Man, I'm so glad your UNDETECTABLE with all you've been through...CONGRATULATIONS!!

Cajun--That is great news UNDETECTALE...CONGRATULATIONS!!

All-- It's about time we have good news coming in.  The tide has changed guys and things are looking up.

Beagle

[NYgirl]

Hey CL that's great news!  Keep up the good work!

It's amazing how important it is to get those results...it's so hard WAITING!  You never really know - no matter what geno you are or what your history is how it's going to work out...it's still such a great big cr*pshoot that when you finally get it...it sure makes the pain worth it.

Being a geno1A and 1B I had to wait until 24 to FINALLY get them - what relief.

Now...we'd better both KEEP IT UP!  :)

[friole]

iceboy
I am so glad for you.  I was afraid you had been pulled from tx.  It is unfortunate that they limit your epogen but I guess, if it came to it, they would transfuse if needed (?).  Congrats on your undetectible.


cajun
You too.  Wow 5 mil to zero in 12 weeks. Outstanding.  Way to go!

[cajunlady]

Thanks, and yes it felt so good to get that result. It's that first mile stone to cross.  My good hubby came with me today and then he took me to lunch.  I did not leave his office today without AD's (prozac) and he kept me on Ativan .05  2x a day.  You tried to warn me; but stubborn like I am sometime, my bad.  I should have known better.  I think now that I can get a center point with the meds, tx should get easier; I know it will make a big difference.

Thanks Again,
cajun

[can-do-man]

cajunlady, way to go gal. Congrats to you.

nygirl says.....Now...we'd better both KEEP IT UP! :).... Care to explain that comment? You have summin i don't know about or what? Im so confused

[NYgirl]

Must be my superspidey powers since I'm radioactive today that let me slip up like that!  :)

[can-do-man]

Just what radioactive stuff they giving you? Maybe some of us could use some of it. Is it true your trying to take Rudolphs job?

[goldyn]

cogratulations cajun you had some hard stats to clear dont you feel just totally Blessed,it wonderful to find out all that hard work, really worked!!!!!

[OnAPrettyPoison]

IceBoy, congrats for getting this far!  It really is a daily battle with this disease.  I hope you do well and the sides decrease over time.  I know what a tough time Mr. BB is having on his 24 weeks, so I know 48 is double tough on you!  Good luck and keep us posted.  We love the good news!

And speaking of GOOD NEWS! Cajunlady you just got the best news we genotypes 1 can get, UNDETECTIBLE!  WOO HOO!!!!!!

[goldyn]

I remember reading your post when i just started my tx, im so glad to see you back  in action  and your stats looking good.
                     Goldyn

[dyce]

Ha dale, I've read something before at janis and friends , under the fibrosis and cirrosis headings. This will give you a lot of info on this subject. There are articles there that show folks that didn't clear and had imflamation and fibrosis improvments, some were pretty sanificant. Good luck dale, we're gonna beat this frigen thing!

Your friend ,Dyce

[dyce]

Cajun, congratulations, all your hard work is paying off, I remember your post on figuring out the weight base pegintron. You've come a ways now, good luck the rest of the haul.

Prettypoison, Ha there girl, thanks for the post yesterday, I wasn't ignoring your post, competeing with the kids for the puter. Your right, I had cbc's done last thur. so I'll see how the hmg stands tomarrow. Doc says we'll get to the hemotologist if it starts dropping. How are you this fine day?

Dyce

[cquest]

I feel your pain sista! I am pretty pissy these days too and I'm not even on tx! People are stupid I agree, makes me wonder how most of them make it thru life w/o hurting themselves or others...hope ya feel better!
Cin

[iceboy]

Hey Beamish. missed your comment. thank you. great to see you. how are you holding out. Im still a nutter. I just came out of a 3 hour "riba unreasonable rage" I can´t understand why people still try to argue with me. It´s hopeless. But the thing is, It would make me even mader if they wouldn´t.

My state is funny now, to say the least. I walk like 97 year old, and can´t even put my socks on. I love life. Oh yes, I got hung up on the film phenomen (1 and 2) (on all my couch testing) It´s such a bad film, but so sweet. seen it 4 times at least and it always brings out tears. And I still think Im OK. Yeah.