BostonGirl off TX

[BostonGirl]

Hi Everybody;
            I was officially taken off TX at my 24th week. I never did clear the virus, but got very close: 124. This really sucks! I was undetectable for the cryo at 16 weeks. I am told that the cryo will more than likely return due to still having the virus in my system, but it will be at much lower levels. I am hoping & praying the cryo will remain undetectable.

The main reason for being taken off tx was due to progressive neurological symptoms. These sx began around 4-5 months into my tx ( right around the time my viral decline just practically stopped, the neruo stuff began )

As each week on tx passed, I would add another neuro sx to the list. My medical team were very concerned about permanant damage. ( me too!) So we all decided it would be best to stop. There's too many sx to list, but mainly they are all MS-like symptoms. I am hoping & praying things will clear up as time goes on.  

I will be seeing the neurologist on Sept 8th and will know more about what is happening to my body. I did have some neuro sx prior to treating, but nothing like this. It is severe. I think that the interferon has just stirred things up.

Susan, I am deeply sorry for your loss. Words are not enough to comfort you. Only God Himself can touch your heart > the Bible says Blessed are those who Mourn, for they shall be comforted. I know HE will comfort you. I am truly sorry for you having to go through this again. I got teary-eyed when I read that it was not happening for you : (

(((((( Sue)))))))

[BostonGirl]

Hello Audrey;
            Are you on treatment? These symptoms can be from the tx. I would recommend seeing your Hep doctor to do some testing. Try not to freak out before you talk with your doc. Let us know how things are going OK. There are many people at this BB that will be very supportive. (((( Sue ))))

Jim; You are so right. I know it was wisdom to stop tx. I was on the 18 month tx plan and more than likely I would have cleared, but you never know if I would have a SVR. I do know that the relapse rate is higher by not clearing at 6 months. Gosh, 124 at 6 months is sooooo darn close too! ( from 55,967,000 )

I am OK with stopping tx though. I would rather not do permanant damage to my CNS. My liver is still in good shape, I was mainly treating for Mr. cryo. I am praying it will stay in remission. thanks again for the well wishes.

((((( Sue ))))))

Nooma;
     Yes, as you can see I was very disappointed. I laid on my couch, crying & eating icecream for 2 days. Then, my pity party was over > and I got back to living, breathing & drinking in life again! There is no sense in dwelling on what we can not change. I always move forward and don't look back. I look to God for my strength. He is nothing but Love & Light! Thanks for the well wishes.    (((( Sue )))))))

[Nooma]

Sue,

Sorry to hear you've been taken off of treatment.  Since our viral loads and cryo were similar, I have been watching and praying that you would have a good outcome.  I know it must be a disappontment for your.  But, heck, you've reduced your viral load by millions.  That has to be good.  Any maybe the cryo won't come back.  No need to dwell on the negative, right?  In any event, you are in my prayers.  I hope you start feeling better soon and back to your regular self.  Keep us all posted.  We're pulling for you.

Nooma

[jmjm530]

Very sorry treatment didn't work, out but you made the right decision. Given your PCR results, had you decided to continue, you probably would have had to up the meds and/or increase tx time to give you a decent chance at SVR. That wouldn't have made sense given your neurological symptons. Hopefully, you'll start feeling better now that you're off the drugs.

-- Jim

[audreywald]

I am desperateto find out why I have severe weakness and pain in both legs,A quarter of a block and I feel I have beenwalking for miles and miles, THey burn, they cramp, the feek that I cannot walk another step.

CAN HEP C DO THIS? DOES ANYONE KNOW?

i AM FREAING OUT BECAUSE IT SEEMS I AM BECOMING REA;;Y INCAPACITATED AND I DO NOT KNOW WHY,


CAN ANYONE HELP?

[BostonGirl]

Thank you all for your kind words and encouragement. You all have been an inspiration to me. I was told the cryo probably will come back, but I seriously doubt I will be attempting interferon any time soon. I will slowly be going back on my natural regimen.

Susan, I know our day is coming. I don't know when and I don't know how, but I know HE will do it for us. I do believe in miracles.

Iceboy > Cryo is short for cryoglobulemia. It's an autoimmune reaction to the Hep C virus. It's a blood vessel disease and can be very painful and do quite a bit of damage. ( then again it can sit still for many years and do nothing, sort of like Hep C ) You just never know when it will rear it's ugly head.

My cryo was actually much worse than my Hep C. At any rate, I got my VL to 124, not thousand, just plain 124. That is what is so frustrating!! I began at 55,967,00. What a trip this tx has been!

I have been left with these MS-like symptoms, but forgot to mention that I also developed something called Raynauld's syndrone in my hands. Fun. I am praying & believing that all these sx will soon be gone. God Bless you all. ((((((( Sue))))))))

[cquest]

I know the feeling of being yanked off tx. It's very frustrating. I took my first shot 8/5 and was told to stop tx by Tues...I had the tingling and numbness in my fingers plus some heart jitters...Now I am glad I stopped because ever since Wed I started getting pregressivly shorter of breath, yesterday when I was walking up the stairs at work, I literally could not breathe...I started to panic slightly and just took deep slow breaths and it passed. Maybe I do have something wrong with my heart, who knows? Who knows what would happen to you if you continued tx? On the balance scale, we have to ere on the side of caution and that's probably what the docs are thinking too. Better off sick w/this devil than dead,that's for sure! It's so freakin hot and humid today, all I can do is stay in the house! I tried going out and couldn't deal...I am still a little huffy and puffy...keep taking deep breaths and trying to get some air...I am using my AC for an oxygen tank and sitting in front of it sucking the cool air...
Cin

[Califia]

I'm so sorry this hasn't worked out for you and truly hope you see some reversal off treatment.  Interferon is a harsh mistress and is not always predictable or kind, but our bodies are amazingly resilient  and can pull through when we least expect it.   May luck be on your side, and please keep us posted as to what's going on.

[iceboy]

Im sorry to hear this Sue. I

[Tallblonde]

Well aren't we a sad pair!  Major disappointments for both of us this month.  I'm really sorry about yours, Sue.  I just hope that something good comes from all those months of treatment.  You may not have reached the goal you had in mind, but there may be other benefits (like licking the cryo) that will have made the journey worth it.  It's moments like these that can really test one's faith, but I know you'll stay strong and confident in His plan. Thank you for your kind words about my situation.  

Take care, Sue.  I'll be praying for you.

Susan

[layla]

I am so sorry to read this. I have been lurking at times and watching what would happen for you. Hopefully the cryo will stay tamed and you have some impovement in liver condition. After not clearing by week 124 and having all your sx it does seem like the best choice was to stop. I at least hope you feel better soon and the sx diminish quickly. Keep us updated. LL