Rescue Meds?

[slideman]

What are the requirements for rescue meds?  aka....how low does your hbg need to be before you are eligible for these drugs?  I see that a lot of people get blood.  At what point does this happen?  My physician has not even so much as mentioned this, although I have asked her repeatedly for some help in this area.  
Brain fog is a huge issue for me, as is being short of breath, being exhausted and not sleeping.  Another problem is headaches and i don't feel like I'm getting sufficient relief with the drugs I have been prescribed.  I was told to just take over-the-counter remedies for the headache.  Now, I have been given a low-dose Tramadol.  I have also used Tylenol 3 in the past with not much relief.  
I think with some sort of rescue drug I could function, which is not so now.  Anyone have any suggestions or experience with this?  

[ptz]

I'm using boceprivir but at week 8 red count was below 10 so my doctor made a referral to a hematologist. I go 3 times a week and get 3 shots of neuprigin (for low white) and 1 procrit per week.  It has helped immensely.

[slideman]

The Dr told me that my blood levels have improved since stoping incivek, they are still well below normal. I cant recall the numbers though. I felt so much better after stoping inc, but now a month later I cant remember how much better. Brain fog is crazy bad. I think if my boss knew how bad it is I would be in a bad way. If I got those numbers I would probably loose  the  paper!! LOL Its just not easy.
The whole tx was based on the 24 wk program, now they want 48. I dont know if I can make it, let alone put my family through all this for that long. I  would have been done the second wk of Dec. Now its clear into the summer. I'm really bummed about that.

[spectda]

You have to know what your blood values are. Rescue drugs are serious medications that stimulate your bone marrow to produce cells. They should be taken when your blood values warrant it, not because you feel lousy. People generally feel lousy from treatment even if their blood values are not a critical or low levels. If your physician is experienced with hcv tx then hopefully they are monitoring your blood levels often and would be talking about intervening with dose reduction or helper drugs if they were too low.

If you don't have copies of your labs please ask your doc for them. The most common values to drop are HGB, WBC and ANC and platelets. Do you know what your levels are currently?

-Dave

[spectda]

too  much water can kill a person so it can hurt. Judy one of our forum members just spent some time in the hospital because her sodium level got dangerously low while on tx. The cause may very well have been too much water.

The recommended amount is 1/2 ones body weight (in lbs) in oz. if someone weighs 100 lbs, drink 50 0z per day. Yes people can drink more, but shouldn't start drinking gallons a day to alleviate side effects
-Dave

[crossroadsec]

Wow Orleans. Kudos to u.. My dr gave me a shot of procrit in his office when ins declined. I was at about an 8.. When all the ins would pay for was transfusion, they got me in n appealed 2 xs now. For neopogen also. It does feel like draggina a heifer. Lol.
Slideman the dr based mine strictly on lab values. I tend to put on a good face regardless of how I feel. (years of living undiagnosed maybe?) But they began to cut back dosages of peg RIBA n I was working every day. Labs don't lie.. That's when I got serious w ins company  cuz it was week 8 n I was afraid.
Dr n RN had gone over all the possibilities prior to tx.  I couldn't think when it hit. I had to trust em. What are ur labs showing? How often do u get em done? What g/s are you? What type of dr are u tx with?
That's all the questions the folks on here asked me when I hit where you are. I'm not that educated in the process... Learning. I'd be glad to share any experience I've had in chasing down rescue drugs... Take care. Karen :))

[slideman]

Thanks for the straight answer. I too have fell victim to the ins co. Its aggravating to  say the least. It seams to me we are all getting conflicting info from our health providers. The ribs rage really kicks in for me when this occures. You are very lucky to be able to pay for meds. I dont know the cost of this drug, and I might be able to afford it, but my income has been negativly affected by tx. I am now working 40 hrs a week, but during my first 12 wks that just was not a possibility. My boss was very good about working with me and I did not loose my job, however I didnt have 12 wks of vacation. So My wife and I have been able to  weather the storm so far, but with my income cut in half for 12 wks, there is know room in the budget for extra meds. Hope it dosnt come to that.

[orphanedhawk]

The headaches are probably from the riba.
All I can say is drink more water, then drink some more. Anytime you feel any side effect, drink more water. It can't hurt and it can help.

[orleans]

what his37 said-armed with good info I insisted on neu. when my wbc got low. they wanted me to skip the meds for awhile but I refused. of course I had to pay out of pocket for the first dose as bcbs takes a little while to approve it. I also had to run all over Atlanta to find it (felt really crappy too, ya just gotta do what ya gotta due to get through this thing). jm

[his3707]

Any number below 10 should be watched closely  It depends on the person.  Some people can go into the 8's and feel ok, I was 8.5 or lower before the procrit kicked in.  I felt like I was dragging a heifer up a hill     horrible