Anemia Rollercoaster

[Libzo]

Hi good people,
I am in my 36th week of treatment as a clinical trial labmouse using biweekly albumin interferon 900 pg and (originally) 1000 ml of riba for 48 weeks.  I am 1b, 57, 112 lbs., 5'6".  I have been undetectable since week 12 and continue to be UND.  Along  week 18, I experienced Anemia (9.9 hmg) and had my riba dose reduced to 600 ml. This is when my ride got wild.  The doc started testing me every two weeks: 9.3 hmg, 9.5 hmg, 9.3hmg, 9.9 hmg, 9.2hmg.  My weight dropped to 106 lbs and has never raised above 116 lbs.  At week 25, the doc raised my riba dose to 800. My doctor whom I had seen from the beginning left to join another hospital and my blood draws stopped.   At week 31, I was feeling better, I thought, and raised my dose myself to 1000 ml.  Week 32, my dose was reduced to 600 ml because I tanked out at 8.8 hmg.  No rescue drugs allowed in this study.  I don't know who I am anymore.  I have to remind myself of the goal at hand.  I have freaked out most of my family and friends.  Even the cat is leary of me.  My significant other bought a kyak and said Goodby.  He is looking for someone who can keep up with him.  I have been devastated by his apathy.  He catapulted me into an emotional kicafony.  Ah so, such is life.  I don't know what hurts more.  

I guess my question is two part:  Is my broken heart and dissapointment hurting my treatment and making my anemia worse?  Also, how have others done with such challenging anemia without the help of rescue drugs?  Thanks  

[Xhrles]

You are in good hands. Saw Dr Rustgi when he gave me an endo in January but deal with Erica for everything else. She's great and you can always talk to your PA or trial coordinator about your hmg or any concerns about getting through the trial. They are busy but will help you. The doctors would like to see you finish and get your health back. You cleared so that is a major positive and something to be grateful for. Take care.

[Libzo]

Imagery had petals tickling my cheek - nice - thanx.  Yes I have to either make an effort to find joy or just let things go or be.  My main doc whom I saw once is Dr. Rustgi of Metropolitan Liver Disease Center/Genome Human Sciences in Fairfax, Va.  The doctor I was seeing regularly before some headhunter took him to Fairfax Hosp was Dr. Mir.  Both docs are excellent.  I feel I am on the cutting edge.  Not bad for free.  I am very grateful - certainly a prayer answered considering when I had health insurance I was denied for "pre-existing condition" bull.  

[Xhrles]

Good to hear you feeling a little better. Cherry  blossoms will be out in a week or two in the district. Maybe get in town and take a walk. Put winter behind you and then you'll be down to 10 weeks and be ready for the fireworks on the 4th. Do you mind if I ask who your doctor is? Good luck.

[Libzo]

A heartfelt thanx!  Once I released my doubts on this board knowing of the empathy at hand I felt better.  I know this jouney is really educational and the rites of fire can't be denied.  I am in awe of those who led the way.  

[Xhrles]

Going through the emotional loss of your SO is surely not helping your mental outlook but it's the riba that's knocked down your hmg. Maybe it will bounce back with the dosage reduction or maybe the doc will have to adjust it some more. Maybe skip a few days to let your system grow some red cells. Sounds like you have the virus knocked out and that's a real positive. You made it through 36 weeks with 12 more to go and I wish you the best. Talk to your doc about keeping a close watch on the numbers and have a talk with someone that you trust. Good friend or a therapist or pastor.Someone that can help you deal your loss and ongoing struggle. Lots of the people on this board have been through these same therapys and personal situations so that's a good start.Good luck.

[zazza]

You have had one tough ride through tx so far. Rescue drugs are not allowed in my country either, but fortunately my hgb has been hovering around 10 anyways, so I have managed without dose reductions.

Actually, I read about the scenario you describe. By raising the ribavirin dose one might end up lowering it even more instead. Well, you weigh 112 lbs, which equals 51 kilo. So if you are on 600 mg ribavirin, that means 11.8 mg per kilo. A little low, but still not that low, and you were on full dose, actually more than weight based dosing, for the first important 12+ weeks.

I don't think your broken heart is making the anemia worse. The depressive emotions caused by the meds might be making your already sad emotions worse though. It is not easy having to deal with relationship issues while on tx, that is my experience at least.

Keep your hopes up! I bet you can beat this virus still!