lower riba?

[Myown]

If by chance my ANC goes down to where I would be a candidate for neupogen, I was thinking of what my game plan would be.

Since I will be doing shot #15 this Friday, maybe I would lower my riba by one pill after week 16 instead of using helper drugs.

I know that lowering Riba is tabu, but since I would already be past the 16th week, what do you think? Of course I will discuss it with the NP or more likely the doctor. But I would be curious to hear if anyone has any thoughts or advice.

I really don't want to use neupogen. Hopefully my ANC will not drop anymore and I won't need this "plan B."

[jmjm530]

My PCP seemed surprised when he learned I was giving myself my own injections. Having HCV is definitely a pass in that office. GIVE THE GUY ANYTHING HE WANTS, NURSE, HE'S GOT HCV. LOL.

[snowbyrd]

LOL oh my God that is so funny about the chart thing....it's so true, i swear next time i go to my PCP I'm going to look in my Chart to see if it says that, you are so right it's like they get all freaked out when you start talking about tx.
Thanks again for the help Jim and for the laugh.....i really needed it.
                    Take care Anita

[jmjm530]

I can't tell how how immediate the effect of lowering the riba might be. Some report feeling better almost right away but it is a progressive curve. I understand about how it works with the PCP's. Prior to my treating, I often had to talk to my PCP personally to get an RX for something. But after I saw him with my HCV dossier, all I had to do was call the secretary and whatever I asked for I got. He probably wrote something like -- GIVE HIM WHATEVER HE WANTS -- in my file, just so he wouldn't have to deal with a disease he -- and many PCPs -- don't know too much about.

-- Jim

[snowbyrd]

Thanks again for helping me out. I get CBC's every week, so i keep very close tabs on all my bloodwork. My Clinic is closed because they are all gone to the hep confrence. I feel like i'm my own doctor now. They sent me home with the remainder of my pegasays and told me to continue with the nuepogen 1 time a week which I will not be taking this week due to the sx I have had from it. I went to my PCP clinic this morning and had CBC and i also told them to do thyroid, it's kinda funny, but not, they will do anything i tell them to cause when i start talking about my tx and sx they just stare at me like they don't have a clue. If my bloodwork is bad i will have to phone my PCP and go see her, because my Hepc clinic said no need to come back till the 23rd for bloodwork. I told the nurse i should be having CBC's every week and that i would like to see the DR, but like i said he is away.
So you are saying that even if i was to lower my Riba it would take a week or so to make a difference in my hemoglobin?  Normal range for Hemo in Canada is 120 to 160 g/L  yes i have felt a difference in how i feel, but as long as i can hang on for a couple of more weeks i will be ok. 2 shots to go and 3 weeks of riba. I had some family come this weekend that have not seen me in a couple of weeks and they are worried about how i look and what this is doing to me. Some times it scares you when people say things like that. Thanks again Jim i will post my labs when i get them faxed tomorrow.

[snowbyrd]

Thanks for mentioning that, i know it's different than the way you guy's do it but i always forget to mention when I'm reporting my labs in Canadianesse.

[ladybug52]

Snowbyrd says they report lab values differently in Canada that's why her #'s look funny.
Bug

[jmjm530]

I don't know why your hemoglobin would drop over 2 points a week later on in treatment.  BTW I'm assuming you mean your hemoglobin dropped from 14 to 11.7 as I'm unfamiliar with it being reported as you state. You might want to check this with your doctor. You mention you're waiting for follow-up labs. When were they taken in relationship to the labs you reported?  

As to lowering your riba, etc, I can only talk in very general terms because: (1) I don't know your complete medical history; and (2) even if I did, I'm not a medical doctor and that's who should be monitoring you at a time like this.

But in very general terms, there are two things they generally do to get hemoglobin back up, or at least to keep it from falling. Either they lower or temporarily stop the ribavirin dose, or they administer Procrit (epo). Sometimes they do a combination.

This can all get very tricky because there's often a two or more week lag time between changing the riba dose and/or administering Procrit and a corresponding change in hemoglobin.

Also, a lot has to do not just with the absolute hemoglobin number but by how fast the drop is and how you're tolerating things. We've had members here functioning on treatment fairly well with hemoglobin around ten -- even lower -- and others like myself who needed Procrit (epo) when hemoglobin was in the 11's. Of course later on in treatment, I was able to function much better with hemoglobin in the 11's but early-on in treament it was much more difficult since my body had less time to adjust to the lower hgb levels.

My suggestion is even though your treating doctor is away, you should make best efforts to contact him through his office regarding your labs, how you feel, and what your thinking is.  Meanwhile, getting frequent CBCs from your PCP should give all concerned more information to make any decisions by. When I was feeling lousy and my hemoglobin was falling, I had CBC's weekly, and during one period, twice a week.

As to the shorter course -- 16 weeks -- again, it seems to make the most sense for those geno 2's and 3's who are non-detectible by week 4 with little or no liver damage and/or those who are having a difficult time with side effects. Apparently, you and your doctor already have made the decision to stop at 16 weeks, so at this point it's just trying to get through the next two weeks of treatment safely which again is why you want a doctor to help advise you here and it's unfortunate your treatment doctor has not taken a more active role but you're not alone in this.  

Be well,

-- Jim

[snowbyrd]

I read the info you sent me the other day, about the geno 2's and the short course tx. DR myself and hubby made the decision a while back to try to get me to 16 weeks. I just took shot 14 today and i refuse to ever touch the nuepogen again. I went for Labs this morning and i noticed on my last labs that my hemoglobin is now taking a dive......went from 140 to 117 in a week, i will get my labs faxed to me tomorrow and if my hemo has dropped any more i will probably stop tx. I mentioned in an earlier post my Dr is away and i'm now dealing with my PCP, who knows nothing about tx although she does know how to read my bloodwork. Do you have any idea why my hemo would be starting to drop now? I wont put anymore drugs in the mix so procrit is out of the question. Would it hurt me to lower my Riba for the next week if my hemo comes back low? Is this all happening becausse i have lost so much weight and the meds are too strong?  Any help is appreciated......Also thanks again for the study you recommended, it took me a while to get through it, but well worth reading.....we certainly need to understand that people need to have individulized tx. Thanks Jim

[jmjm530]

Good luck! Do let us know when you hear!

-- Jim

[jmjm530]

Peanut butter and Jelly sandwhiches with banana chasers sound perfect both for fat content and to keep his weight up, assuming of course he can tolerate. Yes, food odors -- especially kitchen smells -- can often trigger nausea and for this reason experts often recommend patients suffering from nausea do not do their own cooking or for that matter go near the food preparation areas. BTW I love veggies but could hardly look at them on treatment.

[jmjm530]

In most cases, nausea is more of a factor very early-on in treatment and then fades. That's how it went with me. You might try "Prosure" instead of "Ensure", as it is a bit more calorie dense plus seems to have more good stuff in it like Omega 3's if I remember correctly. Also, if he can tolerate it, you could sneak in a scoop of ice cream, some fruit, some ice and blend it all together. At one point during tx I was so panicked about losing weight that I did some serious research into the most calorie dense foods. I believe Sarah Leigh's Frozen Cheesecake with a fruit topping came out very high and at least for me it was quite tolerable. I ate it half frozen but most would probably prefer it thawed. Of course I'm a cheese cake nut from way back and could have eaten the whole thing except for the reflux I had at the time. Also, those Cozy Shack Custards were easy to get down and had adequate fat and calories. Do you remember what Nick liked to eat as a young child? I found the comfort foods of youth more appealing during treatment than food tastes aquired as an adult. Had a lot of hot cereal and poached eggs and white toast with butter for example. Also applesauce. I think my taste buds regressed to age 3 on treatment :)

-- Jim

[Myown]

Okay I'll let her stay sweet. I promise not to influence her. ha!

[jmjm530]

Here's a link to the Clinical Options Web Site where short course -- as well as longer (extended) course -- is mentioned in regards to the new trend among hepatologists in individualizing treatment be it to shorten or lengthen treatment depending on viral response as well as other issues Thanks to M. Simon for the timely posting the link on the other side in regards to the week 4 testing issue.

In part the training module by Dr. Sulkowlski reads:

"...A more recent development is the use of early viral RNA level at Week 4 of treatment to determine the probability of viral relapse, which may further refine the use of early virologic response monitoring as an effective guide for identifying the optimal duration of a treatment regimen.[9] Emerging data suggest that some patients with rapid viral response (eg, HCV RNA undetectable at Week 4) may be able to shorten their course of treatment, whereas others without complete suppression of hepatitis C replication (HCV RNA detectable at Week 12) may benefit from extending the course of treatment.[10] Future HCV treatment guidelines will need to incorporate these data on individualized treatment duration to improve outcomes with current therapies..."

Free registration to the site required for complete copy here:
http://tinyurl.com/2855yv
------------------
MO: Thanks for thinking of me. No, I think you should keep your WCT (woman combat training) for military use only :)

-- Jim

[Myown]

No, I meant HER stats, not mine
-------------------------------------------------------
Yes I know you meant that, but I have to tell her about you too. LOL

I put in a good word already for you a while ago when I had a discussion with her and we happened to be on the subject of male/female relationships.  

I told her I know a guy that would be a good catch for her, that's all I said. It depends what kind of personality you like too. She's very nice. If you like women that give a little bit of a hard time as far as personality, I'll personally train her myself before you go on that date with her.   But I think you would like her without the added Myown flavor.

But anyhow if you are interested you can email me and I will give you her stats off line. I mean a date or 2 and if neither one is interested it could be fun for you guys and if nothing else maybe develop into a lasting friendship. If you are afraid of blind date and want to pass, no problem I understand.

I think that because you both have the common interest of writting you would have a special bond even if it didn't work out as a guy/girl thing.
-------------------------------------------------------------------------------------------
"Didn't realize you were a singer. Dated a few and let's just say they made for very interesting relationships"

LOL Interesting relationships ha! Whats that mean? Well you can't lump us all together. I don't like generalizations, especially with my unique personality or as you refer to me PITA . ha!

As far as my ear, its not like a rash. It was just pink. But I'm real smart. I had an ice pack on it. Maybe that caused to red mark.  Just call me Einstein.

So thats the story. The ear pain is subsiding thank God. I wonder if its nerves in my neck or something. I need to see a good chiropractor. Maybe mikesimon will give me the name of his. His chiro did his transplant. Leave it to mike to find the best.

[Myown]

Myown, obviously my being ADD has not sunk in or you wouldn't try to get me to be the wedding planner. But it's a job I'm going to tackle, for Jim
-----------------------------------------------------------------------------------
YES!! I know you'll be great!!! Of course I will sing, no problemo. Thats great you have all that experience from your daughters wedding. Don't worry about the bill. Its obvious Jimmie has big bucks. I'm sure he lives in some swank place over looking Central Park.

Can't wait for the big day.

[ladybug52]

Myown, obviously my being ADD has not sunk in or you wouldn't try to get me to be the wedding planner. But it's a job I'm going to tackle, for Jim. I just did my daughters from start to finish last year and it was a big one. I did everything from decorating to flowers, had a caterer for the food, although I made a lot of that too! Only condition is that you have to be the wedding singer, you probably planned on that anyhow.
Jim, yes I need to be less sensitive to people who only post occasionally and are not necessarily talking about me or my circumstances, just the SOC, shich as you pointed out, is different than protocol.
Child, Sorry to hear Nick couldn't finish dinner. What about the meds they give for nausea that are applied to the skin behind the ear? It helps dizziness and nausea and has a calming effect. Let me see what it's called. Well this is scopolamine and is really for motion sickness. There might be another for nausea, ask the dr.
take care,
Hugs,
Bug

[jmjm530]

I forgot all of Nick's symptons, but did they look into either something like peptic ulcer and/or GERD (chronic reflux)? Both are treated with PPI's like Nexium and I believe they may use antibiotics for the ulcer. I had terrible nausea for the first 12 weeks or so of treatment and of all my side effects it was the most intolerable and had the nausea continued a few weeks longer than it did, I would have been forced to stop treating. There are anti-nausea drugs on the market like Zofram, but the best results according to some come from Marijuana. A doctor can prescribe medical marijuana for nausea and in fact marijuana was suggested by my liver specialist but unfortunatly it doesn't agree with me so I declined.

-- Jim

[jmjm530]

Forgot to post the link and now can't find it. LOL. I'll repost if I can but basically it will show a dark red spot. In my case, it was very sensitive to the touch.

[jmjm530]

Bug,

Yeah, silly to look back or think about told-you-so's. No guarantee anyone will be SVR be it 16, 24 or even 48 weeks. You made your decision based on what you thought best for you. It would be like saying to an RVR geno 1 who  SVR'd (or relapsed) after 48 weeks of treatment -- look at all those drugs you exposed yourself to, when you probably would have had the same result with half the drug exposure.

MO,

No, I meant HER stats, not mine. LOL. My problem is I do better in person than on paper, given my sometimes unrealistic expectations regarding age, looks, intelligence,  etc. Probably one reason I sit home many nights, but also why I've had some pretty good relationships while they lasted. Didn't realize you were a singer. Dated a few and let's just say they made for very interesting relationships.  

As to your ear, you might want to check out these pictures unless you have a queasy stomach and then I wouldn't. The two pics that might be relevant are "fissured ear lobe" and "eczema on ear". Both nearer to the bottom. Eczema can sometimes present itself as a little spot as well as more dramatically as shown.
I use "Elidel Cream" for eczema behind my ears and it works very well. You might also try an antibiotic ointment or a topical steroid, just don't use the topical on your face or for very long, and best to run all the above by your doctor. If it spreads or gets worse, see a dermatologist. You also might try giving the spot a vacation from makeup, soap and even OTC moisturizers. Substitute instead Cetaphil Gentle Cleanser (for soap) and Cetaphil Creme moisturizer for OTC moisturizers.

-- Jim

[aquarius64]

hey, how are you? i don't get online much these days but i wanted to say hello and hope all is ok with you. my anc was 1300 but its now up (on it's own) to around 2300. platelets are a worry for me, so my GI says. they went from 82 to 59 and my GI lowered my inf to 1/2. some of the people here say that was a bit conservative and i believe them. i'm going to do labs this week and see if it changes cuz i know i'd rather do full tx till 24wks if possible and i too was UND at week 4. good luck and i hope you are doing ok and do feel better!

[Kalio1]

We've had a lot of people UND at week 4 who still relapsed. I hope all that decide to cut their treatment short realize this.

If cutting tx short ends up meaning you relapse, you end up doing a LOT more tx in the end.

Just because a study shows that SOME people still cleared the virus who did a shorter tx doesn't mean you should try it. It is NOT protocol to cut tx, you are taking a big risk in doing so. I have been told by 3 different doctors that they would not encourage any patient to cut tx short based on some study they read.

It is true that being UND at week 4 can increase your chances of clearing but if you cut tx short you are adding risk that you won't clear it.
You cut off 12 weeks and relapse, you end up doing a lot more than 12 weeks if you have to tx again.

[jmjm530]

I'd like to clarify a few things based on the last post.

(1) MO's question was not about short-course versus the longer-course treatment. for geno 2's. She presented a hypothetical whether or not she should reduce meds at week 16 verus taking Neupogen. It's a valid question for someone who was non-detectible at week 4 and even the one study that supports 24 weeks, suggest that in cases with difficult sfx, the shorter course is a sensible option since the odds (80%) are still very good. On a personal note, except in jest, MO knows I wouldn't suggest she take the shorter course because we know each other too well, plus the fact she has had a relatively sfx-free treatment experience. Again, she presented a hypothetical where she might have to take Neupogen.

(2)

Kalio: We've had a lot of people UND at week 4 who still relapsed. I hope all that decide to cut their treatment short realize this.
------------------------------------------------------
I'm sure we've had *some* who were UND at week 4 relapse, but I think it misleading to say that we've had "a lot" of geno 2's relapse who were non-detectible at week 4. As we know, the relapse figure for geno 2's is only 20% overall. Those who are non-detectible at week 4, would even have a lower relapse figure. And depending on which study your read, those that take the shorter 12 or 16 week course, have either an 80 or 90% chance of SVR. In fact, and I may have missed someone, but I don't remember any geno 2 (or geno 1 for that matter) who took the shorter course that did not SVR. I'm estimating that we've had 4-6 geno 2's reporting the short course and 2 geno 1's.

(3) Kalio: It is NOT protocol to cut tx, you are taking a big risk in doing so
------------------------------------------------------------------
The shorter course is a protocol, either officially by the EU or less official but put into effect by clinicians as noted in some of the presentations over at the Clinical Care Options web site. And again, even the one study that did not recommend the shorter course for optimal results (two studies said the results would be the same) suggested the short course was an option for those having a difficult time with treatment since the odds while not optimal (90%) were still pretty good (around 80%).

-------------------------------
My position has always been that the shorter course of treatment is a viable option for everyone who qualifies -- especially those with little or no liver damage and those who are having a difficult time with treatment. It can be reasonably argued that whatever risk involved in incrementally lowering the odds of SVR are balanced by the rewards of less exposure to the treatment drugs. It's a risk/reward equation that everyone and their medical team must weigh to come up with the decision that works best for a particular individual.

-- Jim

[Myown]

bug and elaine, depending on what kind of Christian music style I will accompany myself (or not). Worship type style music is fine, but real foot stomping or real black gospel I only will use a black person. You cannot beat them. I studied classical piano and to me that is more robotic whereas gospel is a blend of jazz,blues and lots of improv.

And in order not be held back as I am singing I need a top notch piano player as I am singing and I am not that person. Desire brings discipline and my desire has always been more in the singing than than the playing so singing has been my focus.

Some places I will bring backround tracks which is the route alot of singers are going these days. It also cuts down on the cost of paying a band and most of these arrangements are beautiful. Being in a group doesn't seem to work for me anymore because I can not stand anyone that is late and this is a big problem with many people.

I'd rather work alone and use people as I need them without having to be permanently attached to them. And then sometimes I will front a choir. That is my fav. Nothing like a full gospel choir and people don't always see a white woman sing the lead in an all black choir so it causes quite a stir (in a positive way)

Any of the black churches that I sing at, these guys are so mega talented that they don't even have to know what songs I am singing, they jump in as if we rehearsed for weeks so if I skipped a rehearsal it wouldn't matter, so as far as those churches I just show up and I am set to go.  

And yeah right Jimbo, a revealing video of me singing, yeah okay, I'll make sure I send a copy to my husband and Pastor too. LOL   Has your testosterone been tested lately? It sounds like your cup runneth over. I'm gonna introduce you to a nice girl that I know. She's an author, so you have the writting thingy in common.  You would like her. Invite me to the wedding tho. Jim's getting married, Jimmmms getting marrrrieeeed. OOoo can't wait!!!!!! Party, party yeah, we're gonna have a gooood time!!!!

Bug you seem to be the type that is really good at organizing things. Would you maybe consider being Jim's wedding planner?

Aquarius..Good to see you. It seems the ride has been a little rough here and there for you. Sorry to hear that. It has to be so hard tho to take care of your kids and tx. I don't know how you do it when you are not feeling well.

That would be good if my Anc comes back up a little too or at least stays the same. As far as your platelets I would probably go by what the others here said since it does seem many of the doctors weren't concerned until the number went alot lower.

Last night and still at this moment I have this weird pain on the outer part of my ear, on the edge. I did not sleep for one minute. Every 7 seconds I get what feels like a nerve pulse or something. It hurts so bad. Its like Chineese water torture. Its driving me nuts. I kept having my husband rub my ear. I felt bad cause he needed to sleep, but I am ready to jump out of my skin even now. He gave me an ice pack to put on it, but to no avail. I don't know what to do at this point. I have no idea if its tx related or not, but I had a buzzing in my leg and now thats gone, but I have this now. Nerve pain is the pits. I even took a tylenol which I don't like doing but it didn't help at all. But hopefully it will leave soon. It better leave cause it is really is crazy, I never had anything like this before. I don't know why I'm not tired after being up the entire night, but it will probably hit me later.

I guess you're looking forward to sitting on the beach soon. That will be nice to have tx over with svr and sitting on the beach with your husband and kids.

Good talking to you!

[jmjm530]

The shorter course is generally 24 weeks for gentotype 1's who are non-detectible at week 4 and had a pre-tx viral load less than 600,000 IU/ml. The shorter-course is 16 weeks for geno 2's and 3's on Pegasys and 12 weeks for geno 2's and 3's on Peg Intron. Again, they must be non-detectible at week 4. The initial two studies on geno 2's and 3's showed no difference in SVR between longer and shorter course. A newer study suggests around an 8% difference. 90% chance of SVR with longer course in geno 2's and 3's and 82% with the shorter course. Not sure however if the latter study used weight-based ribavrirn, and if they didn't, that may account for the difference.

-- Jim