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Just to say thanks

by TeZe, Dec 06, 2006 12:00AM
Hello all, Just wanted to post to say thanks for all of your posting i read daily and it helped me cope.  I have Geno Type 1A with Accute cyroglobulinemia. (Vasculitis) started my treatment after I was hospitalized with Cryo symptoms that disabled me. My TX was started in the hospital and it quickly arrested the Cryo.  Viral load was 5 million in August started tx September 4 and the 12 week check up reveiled I am not a responder.  My Gastro Doc has referred me to a Liver specialist to see what can be done to keep the Cryo at bay.  No Cirrosis yet so thats a plus.  I will keep on the riba and pegsysus until I hear different.  thanks for helping me get through the tough first weeks of tx.  Happy Holidays to all on this forum.
Member Comments (12)

by FlGuy, Dec 06, 2006 12:00AM
To: teze
These meds are bad enough when they work.  Maybe check with the current doc to see if he suggests you continue.  Could take a few weeks to get into the next doc and this is no time to be on the meds if they are not necessary. Good luck, hope things go your way.

by sfbaygirl, Dec 06, 2006 12:00AM
To: Teze
Sorry about your non responce. That is a tough one. I am glad you are having luck with the cryo though. It's good you have a good dr. Wishing you the best! Don't be a stranger! Most of us don't bite.

by TeZe, Dec 06, 2006 12:00AM
Yes the meds are bad enough, but current doc says it is keeping the Cryo at bay.  I take the side effects over the cryo!  Hope the liver doc can give fresh insight.

by crsrph, Dec 06, 2006 12:00AM
To: teze
sorrry about your lack of sucess 1 started tx 9/1 had virial breakthrough on week 10 labs i also am still treating for i feel beter on treatment than before i started   no expert on cryo but tx seems to greatly improve this condition for many best of luck as you treat through this holiday season

by chcnme, Dec 06, 2006 12:00AM
To: Teze
Sorry to hear about the nonresponse and hope the specialist will have some good options for you.  I've heard about that some patients with Hep C have cryoglobinemia, but I've never know much about it at all.  So treatment put your cyro in remission?  That's great! I hope they will find a way to keep it at bay.  

Happy Holidays to you!

by TeZe, Dec 06, 2006 12:00AM
The Treatment of the Cryo using these meds are the only thing that made the cryo all but disappear.  will post again after the liver doc and I get together.

by ladybug52, Dec 07, 2006 12:00AM
To: Teze
I have wondered about having cryo myself but my pcp had never heard of it. What specifically are your symptoms? I don't think I have it since reading your comments, I don't have any symptoms that are worse than what tx sounds like.
Hope your hep dr. has a plan. Good luck!
Bug

by TeZe, Dec 07, 2006 12:00AM
I will post my sysptoms later today with the cryo (leaving for work now)  thanks for all the encouragement.  and your right you guys don't bite. LOl   later

by giddyup, Dec 07, 2006 12:00AM
Hi tze I have Cryo also. Can you tell me what some of your symptoms are? thanks

by TeZe, Dec 07, 2006 12:00AM
I started with red bumps in my upper legs, then my lower legs the red bumps became more concentrated like red bloches.  Ankles and feet were next with Ice cold toes and feet along with the red bloches covering 90% of the area from the knees to toes. what hospitalized me was the area on my legs that turned into deep purple raised softball sized sores.  lot of pain and extreme swelling by then.  with in two days after my first Pegasus injection the cryo was starting to reverse the above effects.  I don't know if I am an extreme case, I just know the treatment is keeping the above symptoms at bay by keeping the hep C in check.  my doc says he wants to hear from the liver doc before stopping tx due to my abnormial circumstances.
Oh and by the way No Spare Change due to all the co pays I am now paying LOL.

by ladybug52, Dec 07, 2006 12:00AM
To: Teze
Thanks for the info, sounds like one less thing I have to be paranoid about!

by TeZe, Dec 08, 2006 12:00AM
I don't wish Cryo on anyone.  it is a some time factor of hep C. I will post more when I know how to keep the Cryo in check for non responders like myself.
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