First of all, I am NOT a doctor.

I think your red blood count and oxygen in blood (goes low from Riba) This happened to me during first few weeks.

My doctor lowered my Riba at this point in half from 1200mg to 600mg - but never stopped it completely.

I would be worried also about not taking the Riba at all with the Sovaldi.
How long are you on treatment for 12 or 24 weeks?

This is why you are so, so tired.....I would call back if it was me, or call the Nurse Line - not sure of your insurance (heck even the company that makes Sovaldi). Bet you can get more help there if doctor's office is not working.

Do you have anyone at home that can help you make these calls if you are brain fogged? With your levels and this treatment, you need help, and I pray you can get someone to make calls for you, or you can make the calls.

Saying a prayer for you now as it is hard to think on the treatment.

thank you sooo much for reply. i am indeed brain fogged but nobody to make calls. I do at least have a couple friends from dog park who I told my problem to so if i had to ask they could go to store or something. and one to take my dog if something happens.
i know it is why i am tired.
from reading an older post in advice section, I am thinking the 8.5 she quoted me must be the hemoglobin ? b/c a guy in that advice post had gone below 9, he said and they dropped his riba dose to half, I think
12 weeks is my tx time . now, I don't know
nurse called me this morning to explain my new need for more BW. I told her she needs to communicate better with me and I need to have the lab results myself so I know what is up.
I also told her I don't have a good feeling about the advice the doc she asked, told her to tell me. I said do you remember Dr. S , telling you to contact him, ON vacation with my test results so he could advise me....she told me she did text him yesterday but no reply so far. He told me he is the only one in their gastro center that does the hcv tx. so concerned..thanks for prayers

The lowest I got in my hemocrits (just looked back at my old bloodwork) was 9. Pounding heart .
He then made me go weekly for bloodwork and also that is when he cut my riba dose in half.

I am glad that you called your doctor's office back & asked the Nurse.
At least now you know she text'd the doctor on vacation.

Omigosh, I can't imagine what you are going through.
Well you took the Riba dose today, right? So that is in your system, working.....the stuff does stay in our system for quite some time.

BE CAREFUL with any stairs, anything.
Don't push yourself at all.....Relax/lay down, sit if you can.

I will continue to pray that you get a call back telling you what to do now.....Hopefully the doc will text back soon with instructions for you.

no I have not taken any more Riba since she told me not to. I know this conflicts with doctor's plans (my liver doc) but shoot, I don't know what to do. so I have an appt. today with my rheumie (he is the one who sent me there in the first place) I am hoping he can give me some advise.
my heart had just started to pound in the days prior to being told by her to not take more Riba now. I so don't want to mess this up. I am basically all alone though I have good friends to talk to but my husband died last year. Not that he would have helped. He had Alzheimers so I helped him. He would have been supportive but he would also have been overly worried which always made me feel bad.
thank you so much for talking me through this. it does help!

ThisToo - you have me worried.....I am glad you saw a Rhemu doc and I wonder what the advice was?

You have been on my mind & prayers....I get so aggrivated when they leave people like you hanging with no other advice.

(If it is any consolation, on the old treatments with interfeuron and Riba - I was sent to the ER from my heart pounding and they took me off the Riba for the weekend. But the end result is I couldn't complete the old treatment as it was too horrible.

I can't give advice as I am not a doctor....Hope you got some help one way or another.
Pls post - I missed your post yesterday, not sure how. tks

Hello ThisToo, I to have had problems with the riba. I forgot a dose a couple times and called the pharmacist who told me not to worry about missed dose on the riba. I was also cut down by 1/3 on the riba because of the sides. I am still undetected although i have 1 1/2 weeks to go on my 24 week protocol.
That Riba is nasty stuff. I took it for 11 months 6 years ago with the interferon. The sides were even worse with that combo. I have the same symptoms this time but a little less as far as the anemia goes.
I hope you treatment will be successful even if you miss a dose.

what? They did not tell you to take solv alone did they?
I apologize I'm on the run to new DR & have been busy & not here, I'll read this better later Oh geeze yes the riba smashed me up & they lowered the dose. They were not responding to my pleas soooo I called the dispensing pharmacist who told me Go to the ER if DR won't respond, I called DR back & told what pharmacist said, & that forced them to pay attention & lower my dose.

oh God, it has been scary. I don't know if the way I feel or the the overreactive nurse who keeps saying I will die, is worse.
omg.
so yea I've been with no Riba for a week now. yesterday's STAT CBC showed the same
hemoglobin 25.7
hemotocrit 27.3
rbc 2.83

actually the hemocrit went up a teeny bit, from 25.7 to 27.3, in the past week--
normal is 35-45

but what nurse does not know is since I was feeling just as weak and unable to function or breath right I stopped the sovaldi , a couple days ago ....that actually helped my shortness of breath.
I think maybe the sovaldi has more of a role than people realize in the sides ??
she is supposed to call me this morning , after she talks with that doc in the office about yesterday's results. thank you all SO much , you have helped me so much for sharing and the hope.
at least now I have my dog's emergency bag stocked and someone to take him , if I have to go to hospital. I am a widow, only my dog park friends here . and my dog. and yes I am going to call that pharmacy !

love fall, not to bug you, but are sure you meant to say your hemocrit level was below 9?
are you sure it is not the hemoglobin ; b/c that is the one should be at 11.7-15,.5....and mine is 8.5
???

i am thinking I may have written down those statistics wrong on me. ?
I'd have to look it up. Oh my poor brain !

ThisToo: I did make a mix-up, it was my hemoglobin dropping along with my RBC (red blood count) that caused my doctor to have me reduce Riba and come in so frequently for blood work.
I made mistakes too. - they just use abbreviations they understand.

I wish to heck you were being watched over more carefully!!!!!!!

It upsets me with these doctors leaving you on your own...that is insane!!
I am sorry I was not online for a few days, my grand-daughter has me worn out watching her 22 months......

I still pray that you get straightened out with all of this....
do you go in soon to the doctor that knows about Hep C or is he finally back to give you advice??

God Bless and watch over you.....

thank you LF and bless you as well. Well my numbers are finally up ; am hoping today the sub doctor will advise back on Riba at lower dose.
did I tell you during my mess with the bad anemia and Sovaldi alone, I called the pharmacy and he told me they were wrong and I should take it such and such way . But I finally just had to concede I better listen and make my peace with it. Actually the past several days I don't itch, my brain fog is lifting and have felt somewhat wonderful. later this week I will know how my viral load is after that time off riba.; they put a STAT on my CBC yesterday but the other takes longer.
I have a much better feeling now. We'll see how I feel after being (hopefully) back on the riba again........lol
I can't find the paper I wrote yesterday's numbers on but I think my hemoglobin is 10 and my other important one is 24
which I think is up from 8 or 8.5
and somewhere btw 10-13 was my former hemocrits I think (now at 24)
I think :D

So glad to hear you are feeling better.

It is very hard to do this alone....the brain just doesn't work properly first from our poor livers and then the treatments.

I pray all results come in looking good!! Keep the faith.

thank you !
I will say this hot weather we now have also takes my energy from the brain and also makes me sleepy.

but I am handling it. Feel much better when weather is cooler !

@ Thistoo glad you are back on track ..and the Riba ..
My heamocrit and Haem are a bit down now .. But the Doc gave me Iron infusions for 4 weeks in April in preparation for this Tx .
I always have trouble with anemia .
I can get my first viral load results in a week ..I am nervous but I can't change the results by worrying ..so I'm gonna go off into the wilds of Canada tomorrow and I will have no phone or internet for a week .Yay ..peace
I am feeling ok right now ..I am a bit snappy with people ..ferom the Riba

My friend says I am mildly irritated because if you knew me ..I am the most laid back person ever .. lol
I find the riba rush a bit hard sometimes as I really need to rest more ..but I am a bit restless especially in the AM . from one of the pills maybe it is the SOV ????
some headaches now and then
and I HAVE to drink so much water .. and it is 32.c today and will be all week blah
after the end of august I have nothing planned so I may be able to rest better.. Ill try and keep up with you 'cos we are so close in tx together
How long are you taking ..12..or 24 .. I have to do 24 so I will be done on 30 December .. Just in time to start a new year

I prayed that this would be MY year to be cured .
Take care and enjoy the rest of your summer ..
Jan