Hi All,

Couple things going on here. I told you all about missing Gerry's appointment last time therefore I missed all my bloodwork questions for the doc.

Nurse told Gerry just to call in for results. I did that yesterday. Doc called me this afternoon and said that his counts are down. Asked if he was feeling tired. I said yes and he said the blood work is low, not bad but low. He said it's like 11.2 and it can go down to 10. Does this sound familiar to anyone? Is he talking red blood count? Is the treatment Procrit?

He also wanted to confirm that Gerry is only taking 800mg of Rebetrol and no more...I felt like say "No crap, buddy why would he want to take more?" Well, if it is too much what will they do.....drop the dosage of Rebetrol----OR----give him something to raise the blood count???????????

Seems like you would just even it out by giving something for the blood count but then again if you lower the dosage of the Rebetrol then is it working? It's a scary thought that 800 is the dosage he's suppose to have but then they might lower it...we'd be worried that at the end of 6 months that if it didn't work would be because Gerry didn't take enough.

That's 1 issue the other is....the doctor broke the news that he's leaving the practice and going to Kaiser in Orange County. Bummmmmmmmmer! Finding a good doctor is tough. Remember I told ya'll that I'm stuck with that practice?...Whelp, I am and now I have to see one of the other doctors in there and start this mess all over. Dr. Kim assures me they are well aware and will take just as good of care but it's not the same, Damn!!!!!

Nurse gives Gerry 1-2 forms for blood work to give to the lab on each visit. I checked them out and it has several types of blood work-ups listed. She only checks the one that says.....CBC w/diff.

On that list is AST, ALT, Amylase, and many others. Can someone PLEASSSSE tell me if we should have some of these others checked off by the nurse BEFORE we see Gerry's doctor for the last time? We go on May 2nd.

I'm wondering why the AST and ALT specifically are not checked? Is it perhaps it's not time yet or maybe the insurance will only cover so much blood work. Hmmmmmm?

Thanks for any help you can give me!
Susan

Hi DD,

Don't know if this will help you in any way or answer any questions, but this is what my dr. has done on me. At 6 weeks I had a major blood work done up. My white cell count was low, so they lowered my dosage of peg-intron. Now I go in on Friday and have another complete work up done, to see if that helped level things out. If not, then we talk medication for lower count. All of my other counts were good. Did you ever sign up for Be In Charge? I tell you those nurses are great and you can call them anytime with questions and they have yet to let me down. They also call me monthly to check in to see how I am doing, any medication changes, etc. My dr. told me that in his opinion it is a waste of money to have a pcr done until being on treatment for 3 months. Hope everyone had a great easter weekend. Keep the faith

Raz is right about those Be-In-Charge nurses. They call you once a month to see how things are going and they are very knowledgable. They also give you a number where you can talk to a nurse any day but Sunday I believe.

As far as the blood tests go the only tests I have been getting that I am aware of so far is for Red Blood, White Blood and Platelettes. My Red went from 16 to 11.3 and White went from 6.2 to 3.1 within the first 6 weeks. All appearantly within acceptable numbers. Platelettes I don't know but has remained the same. The nurse mentioned that Pain Relievers will change the Platelettes and that determines whether they let you keep taking them I gathered.

You can request a copy of his blood results. They are his afterall.

As a matter of fact the BE IN CHARGE nurse called last night, asked for my husband and it's been so long he thought it was just someone trying to sell him something. He told her he'd call her back. Uuuuggghhh, that man just doesn't think sometimes!!!!!!!!!

I think the unfortunate thing will be that the nurse will only talk to Gerry and he won't know what to say or ask unless he has a paper in front him at all times. He's going to call tonight and ask them if it's alright for me to call if I need to. Also we're going to keep my "doctor notes" by the phone.

Well from what you're telling me I guess it's the white that's down. Guess I'll find out. He just made a comment and said "you're allowed to go down to 10 on this medication" but then elaborate what if it does go down that far.

Hmmmm, I was told a different story about blood work. Doctor said that he checks it for different reasons but the 12week will be the deciding factor as far as treatment.

I can't understand why a doctor would just let your blood count get so low that you could pass out. Guess he has his reasons.Especially knowing that it DOES cause this for some people. Why not monitor it.I belive this is what our doctor was checking for.

Gerry was having blood drawn every 2 weeks now it's every 4 weeks BUT...with it getting so low he wants to have it 2 weeks earlier.

Suzy-
Sorry about the Doc, the count for a low of 10, is probebly the RED blood cell count, I am on 1200 mg of Ribavirin, which is rebetrol, [different brands],
and my Reds went under 10 substancally around shot four, they where going to lower my dosage of Ribavirin, I said NO, not yet, and it leveled off at around shot seven.

when it first went down, I had shortness of breath, but its not a problem for me now, " ole lucky" there may feel a little more fahtiqued for a while also, if it gets bad, YES Procrit is what is given then to level it off quicker.

They may alternate ALT, etc on different weeks, the PCR is normally taken at the anticapated 12 week mark, they may check blood for blood count now every week for a while until things level off, I would imagine that they would give every test that is a nessicity.

Things will work out, find a new Doc- that may just be what the DOC ordered, [dumb attempt at my warped sence of humor]
Be Positve, Be Well+


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--Get Outdoors-Enjoy Life----Neil

Hi Susan, Neil is right, its the RBC's that they are monitoring for 10 and below and Procrit would be a solution.

I am on 1200mg of Copegus (Ribavirin/Rebetrol all the same). I get blood work on May 2nd also.

Ny NP told me to watch for signs of shortness of breath, extreme fatigue (like can't walk a short distance without having to take a break). She also said the water would hydrate me and keep more RBC circulating which would help. If my count is too low they'll try Procrit and if that doesn't help, they'll drop the Copegus. She also said she rarely has to do this; that most people's body adapt.

I'm glad someone mentioned be in charge; I need to sign up for that.

TTL
Jeannie

Suzy-
By the way that is part of the job of Rebetrol, to lower blood cell counts so the Pegs are more effective.

Be Positive, be Well+

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--Get Outdoors-Enjoy Life----Neil

HI DD,

I may be speaking out of line here, but I have always been one to speak my mind. From most of your posts, I am getting the feeling that you really aren't that impressed with your medical doctor and his staff. I, myself, changed my primary dr., whom I loved and respected dearly for over 20 years, because he didn't catch my hep c from my bloodwork numbers. I found a new dr. and really am impressed with him. I am equally impressed with my specialist, yes I feel very lucky but it did take some searching to find someone that I felt comfortable with and had confidence in. Maybe, as Neil suggested, it is time to find another doctor. I feel it is very important to have a good communication line with your medical professionals. We pay them good money and they should be there for us and answer any and all questions we have. They must make time for us and, let me state again, we must feel confortable and have total confidence with our doctors. I have no problem questioning my doctor. I am very pro-active with my treatment and he respects that very much and his staff is always there for me when I call. I know it is a pain to find new doctors but it may be worth it if you don't feel you are getting the proper treatment or they aren't answering your questions properly or explaining why or what they are doing with your treatment. I hope that I haven't offended you in any way, I just have gotten the feeling you aren't satisfied with your dr.'s care. Keep the faith

Thanks all for the advice. I guess it is the RBC's...I wasn't thinking. Also I've read elsewhere that it could just be a touch of anemia and they are saying that's something a little different or at least the medication for it is handled differently.

Raz:

Don't worry I don't offend that easily. I'm a pretty light hearted person, takes a lot to get me going.

Anyhow...wished I could get a new doctor but as I've posted before. I'm stuck because I was an idiot thinking that switching to an HMO would be soooo much better as far as the pocket book was concerned. Well hindsight would be wonderful and in my defense I had NO idea how awful it would be, I had no idea that we would all need to be under a dermatologists care, I had no idea that Gerry would be going through this treatment...etc., etc., I actually made the switch in February of 2002 but the stupid insurance guy didn't fill the paperwork out right, it became effective in August and in October 2002....Gerry saw the specialist for the first time.

I'm in a "Long Beach Group" so to speak and MUST stay within my network (I was not told this when I signed up) or I have to pay out of pocket. Wished I was rich, because I would certainly do that to get better care. I'm within my network going to these yahoos but guess what...they are the ONLY yahoos within my network....in a word STUCK!!!!!

Oh I was really happy with the doctor...it was the office girls I hated..still do.

Anyhow enough of my ranting....thanks for all the postings.

Susan

...a quick response. I'm at week 28 of my peg/ribaviron treatment. I'm taking 120 micrograms weekly of the peg and 1200 of the ribaviron (rebetol) daily. I'm not sure if this is a typical treatment model (any feedback would be great!). Anyway, I had problems with low red/white counts during the first few months. Procrit was used to treat the red (hemogloben) and Neupogin for the white. Both appear to have been successful. Had a CBC and Liver enzyme test done last week and all appeared ok. I'll update the posting with the actual numbers when I get them.

I'm genotype 1A. I know that this is the least responsive but I'm pressing on. Not sure how many (percentage wise) as to how many of the total peg/reb treatment recipients are type 1A but would like to at least update this segment as to my progress.