What to do now and other posts

[doll face]

As many of you know I commute back and forth to Michigan for my doctors visits from Tenn. I had my 12 week test done two weeks ago but the lab forgot to put the test through then. Well I finally have the results now viral load is less that 600. Yes!!!I will have an more acurate test done in 6 weeks.
but my blood levels are extremely low wbc 1.6  rbc 3.06 hemo 9.9
and now I have an upper respitory infection. My doctor said that he does not want to prescribe procrit at this time.  I went to the clinic for the cold and practicly had to beg him for antibiotics to kick this. I was told to only take a half a shot this week if I am not better by Saturday. Since the meds are working I do not want to quit them but I can't seem to fight this cold off any suggestions? If my blood counts are so low why not start the procit?

[cindee]

hey I went back to my gp yesterday...and I was wrong about shot last wk....duh....brain fog...I did shot 45 today. Anyways...my gp didn't like the sound of my breathing...he gave me another breathing tx YUK !!!! makes me so nervous....he gave me zyrtec, that was one he gave me last time..it works great{one@nite}, he also gave me 2 more inhalers added to the albuterol he gave me last wk. {#1 aerobid 4 puffs 2x a day am @ pm}...{#2 flovent}4 puffs 2x a day. also I called my liver dr before going...because I wanted to get a flu shot. i was told NO...it is an active virus, I told my gp what my liver dr said and he agreed. so that's my up date for ya...I really hope you are feeling better. I am starting to
!!!! yeah! ~Cindee~ love@prayers to you.

[doll face]

I did check with my hep doc first before I took any thing but the gp I saw was afraid to give me anything in the first place. I finally got amoxicillin and a decongestant.I haven't gotten any worse but not getting any better either. Hopefully I caught it and started antibiotics early enough.Ready to do my shot and I am not doing 1/2 one either like suggested. Hope you are feeling better soon. You are in my prayers. how many more weeks do you have left?

[cindee]

i have had my upper res. infection for about 2 wks now. still not getting much better. my dr gave me a breathing treatment in the office and 4 predisone pills, he also gave me a 6 day pack of predisone, antibiotic was a new one called avelox...took it for 5days...he also gave me zertec{maybe spelled wrong...brain fog}. i have also had a time w/mouth sores{inside mouth and on tongue}gave me magic mouth prescription for that and he gave me 5 pills of diflican, to keep from getting yeast infection...told me to take one and save the others for when my mouth was real bad and last he gave me an inhaler albuterol 2 puffs 4x a day. my sore thoat is gone for the most part...but i am calling tomorrow for a re-check. i did call my liver dr and left a list of all meds my gp gave me, was told if i couldn't take any of it,dr would call back, never got that call so i took the meds. still coughing a lot and still yuk coming up when i cough. i guess it's just harder to fight infections when our immune system is so low. best of luck to you and call your gp. then do what i did and call your liver doc to make sure it's okay to take them. hope you get some help soon and feeling better. much love and prayers to you.

[doll face]

How long have you had the resp. infection now? what antibiotics did they give you? I know what you mean about the last of your energy I never thought this week would end at work today. I have all day tomorrow to rest before my shot. Then 2 days off. Hopefully that will be enough time to rest and try to kick this.It is bad enough dealing with sides from tx but to have to deal with cold also just stinks. Good luck to you too hope that you are feeling better.

[cindee]

i am in week 43 of tx...and had to go to gp a week ago thurs...am fighting an upper res. infection and have some fluid in right lung....he gave me antibiotics...am feeling a little better, go back for 2 wk follow up this thurs. still coughing up some green and brown stuff....yuk!!!! and  the meds he gave me made me sick!!!! took away the last of my energy!!! hang in there and hope you kick that cold. much love and prayers to you.

[Galen]

Try mineral oil instead of baby oil.  The only difference is that baby oil has fragrance in it and is more expensive.

[kennedge]

pegintron 120/riba 1200

calif.

[oldhippiechick67]

Good to see you again Indiana, your humor is great.  I want to know what meds you were on too for my website.  Also thanks for the info Galen, Kennedge, DlbDose, and Willing.  I dont think UV/sunlight would help my itching, my skin is really dry in places already. I have been using the baby oil after showers and that helps, and its cheap!  Thanks whoever said I looked younger than my age, I have been very fortunate for holding up under all the abuse I put my body through.  That pic is 3 yrs ago, I am growing out my grey hair and you would be freaked to see me, I have probly aged 10-15 yrs in the past 2 yrs. I keep tellin myself, after this tx year, I will shape up and get my glow back, turn platnium/grey, if it doesnt look good I will hit the dye bottle again.  And shed 20-30 lbs hopefully.
Any ways, I would like your meds and what specifics for your history Dbldose and others, I am going to try to fit that on the webpage somehow.  In the meantime, send me your info to :  ***@****    Im lacking some states that many of you are from.  THANKS!!   ohc67

[kennedge]

nope...newgirl is in the bay area...but she's been awful quiet lately...i'm much further north...up where the valley runs out and the mountains begin..

[susan400]

Someone just mentioned using extra agents with the interferon like Zadaxin, Amantadine, etc.  I've tried the Zadaxin.  It did nothing for me other than hit my pocketbook big time. However, I have a friend on line that swears by it to help him with his side effects and he's willing to pay the ridiculous amount of money that it costs.  It cost me over $2,000 a month to get it imported, not covered by insurance because it's not FDA approved.  I think I'd rather deal with sides than pay all that out for something that is not a cure.  Anyhow, I am not saying that I have not gone outside of the normal treatment regimen.  I've gone WAY outside of normal on that.  My doctor put me on high doses of Interferon since I'd been a treatment failure so many times in the past.  Now it looks like this course of treatment is doing something since my viral load has dropped to 1,000 copies.  It's taken 9 mon. of this high dose treatment to get to this point,but I'm still encouraged.  Susan400

[kennedge]

which state of california are you in? northern? central? southern? or confused?

[willing]

kennedge : I'm in the Santa Cruz mountains - you're in the Bay area right? As far as I can tell the whole state is confused. It's a brain fog epidemic - not a ray of clear thinking anywhere...

ohc : I realized that, as ever, I wasn't clear in my last post. The UV "light therapy" is 2-3 times per week not per day. I go to the dermatologist's office, take my clothes off and stand in this big aluminum box surrounded by high-energy UV bulbs. If the skin problems are driving you crazy it may be worth asking your Dr. whether this treatment is also effective for eczema.

[Galen]

Just looked at your site again and thought I'd let you know that I am from Florida and did PegIntron with 800 mg riba, Procrit and Neupogen weekly from week 9 on.

[willing]

indiana: boy it's good to see you can type again -  I was worried it was either too much post-SVR bubbly, too much time in the pastures or both..thanks for thinking of the satanist. Along with the evil, maybe he can also rid me of flatulence and riba-road-rage - both of which are starting to get out of control.. My first born is named Virginia but I absolutely refuse to pull any hair off my dogs - I know who'll get the sorry end of that deal..

ohc: I live in California, the state where you really have to pay attention if you want to distinguish a comedy show from the news. Meds are pegasys, 1.0 g riba, 10mg lexapro and zyrtec. Have to confess I was thinking about you today while standing naked in a  big aluminum box --huh, let me explain. You mentioned eczema - I had a little psoriasis before tx which is now pretty much rampant all over my body. The zyrtec lets me sleep at night but what gets me through the day is 2-3 short (1m15sec) sessions of intense UV prescribed by a dermatologist. I don't know if it's psoriasis-specific but it works very well ( I can really start to feel it if I go more than 4 days without).

[willing]

assuming your VL didn't change much from the 3/19 test, the drop from your  5/10 start date to your 7/28 test is log(2070000)-log(55600)=1.57. This is not 2, as doubledose points out. On the other hand  you took the test almost a week early (at 79 days rather than 84), you don't have an exact baseline VL and all these numbers are subject to error. I'm assuming your Dr. is simply rounding up and would suggest talking to him about the issue. Your response is so close to the cutoff that simply increasing the length of tx by a few months may be sufficient( the actual 12-week date would have been 8/2 and a linear fit of your VL data has you getting to the 2-log drop by ~8/20)

(disclaimer - my typing is worse than Indiana's, you should get someone to check these numbers..)

[DoubleDose]

Please understand that any comments that I make regarding possible modifications in therapy, odds of success, etc. are from a fellow patient's standpoint, and are meant to provoke CONVERSATION with one's doctor...as well as assuring that an individual's doctor is up to date with current opinion.  Realizing that many docs do not specialize in HCV, and others just may not have accumulated enough experience or knowledge in treating patients, I think it is best to be on top of one's own progress and data, as well as beingable to 'push back' with your doc, citing relevant studies, to receive the most state of art treatment and decision making.  

I am certainly not trying to tell anyone what medical decisions they should make, but only point out what the best literature indicates regarding their particular situation.  If that leads to more provocative interaction with the treating physician, more patient involvement and responsibility for decisions, etc. then I think that is a good thing.  Anything that I might comment upon is merely my ventured opinion...to be taken up with the doctor and hopefully explored  with the patient.

If this leads to more informed decisions for others undergoing tx, then I am happy.

[kennedge]

i don't know why ...but i feel i have to comment..
i believe the information that your dispensing is very useful to this forum, but also I believe you don't have enough detailed information regarding an individuals history to be recommending or not recommending dosing levels or other meds (procrit, etc)

again i'm not sure why this is rubbing me the wrong way, but we are free to voice our opinions here...

please don't take offense, but we are are all unique individuals and what you feel is best for your tx does not fit everyone.

[DoubleDose]

No I am not in the medical field, but do have a business and scientific background, which may explain my focus on analysis, research, studies, documentation, etc.  All of this information is a tool for all of our tx efforts.  But more to the point, I have been on tx twice, for fifteen months four years ago, and currently at week 71 of a 72 week high dose tx.  I have probably done more work over the years pursuing current HCV research, speaking to doctors around the country, and trying to sort out the fact from the hype...on things like Pegasys vs. Peg-Intron, does amantadine work, is induction therapy better, duration of tx, genotype issues, etc., etc.

There are some solid docs out there, doing large, objective studies...and there are others who  are either hyping a product, or self-promoting, etc.  My focus, is to follow the current research and HCV body of knowledge, and then to take the best and push my tx to the 'edge of the envelope'.  We have a decent chance of cure these days, but it is a very tough tx, with very difficult side effects...and we all respond uniquely, according to our genotype, individual immune system, genetics, age, duration of infection...etc.  Until something better (easier), and more effective comes along, we must patch together a combination of the best available drugs....Pegylated Inf., Ribavirin, and medication for side effects.

I still do not see much earth-shaking results when studies use additional Amantadine, Zadaxin, Beta-Interferon, or other adjuncts.  So we really have two major tools:  Inf. and Riba...Monitoring the viral decline curve is about the best predictive tool that we have at our disposal, which is why I harp on it constantly.  If we use this info. from regular early PCR/viral load tests, we can determine our probabilities of SVR, we can know what total length of tx might be best, and we can know when to make dosage adjustments or begin new tx  strategies, etc.  It will also tell us if we should discontinue tx, so that we don't go through a major ordeal for no reason (minimal odds of SVR).

On the Procrit question, I have gone as low as 8.5 on Hemo counts before using Procrit, and BELIEVE ME, you do not want to go there!!  or anywhere close.  Generally, going under 10.0 Hemo calls for either Riba dosage adjustment, or addition of Procrit.  We all know that decreasing Riba lowers our odds of SVR with each 200 mg. increment that we decrease, so most top HCV docs are currently using Procrit in order to avoid dosage reductions, and hence lowering our odds.  

I would do some internet research, and find various Procrit studies for HCV tx and show them to your doc.  If your hemo is still adjusting downward you will want to begin Procrit sooner, rather than when you get to a 'crisis' point with your Hemo levels.  I think most docs would agree that 9.9 hemo calls for action...now.

[oldhippiechick67]

thank you for answering!  I need your state and what meds you are on please!

[Indiana]

And I need the name of your firstborn child and some hair from your pet. I'm makin a deal with the satinists over in the trailer park to cast a special spell that will rid you of all evil....like Dragons.
Ohc....You ain't that old. I saw the pic that you posted. You look like a "youngin" to me. I think you would get at least a 6 on the "Hot or Not"site my kids go to.. Not bad for a tx queen. Your site looks great.

[willing]

raheem recently went through this so hopefully he'll see your post. Best I can suggest is to show your doc the guidelines for side management discussed in this <a href="http://hepatology2.aasldjournals.org/scripts/om.dll/serve?action=searchDB&searchDBfor=art&artType=fullfree&id=ajhep036s237#head6">paper</a>from last year's NIH HCV consensus conference. The treshold discussed there for dose-reduction/procrit-remediation is 10. Best wishes to you - sorry the meds are acting up.

[oldhippiechick67]

Curious, are you in the medical field?  You surely talk like you are, and if so, I wonder, my hgb went to 9.9 last week, and hct is 29.2.  The doc didnt say anything about Procrit, just get it tested again this week.  Which I did, just waiting for results.  So, being female, that is kind of low, as I was 14.3 and 39.2 to start with. I dont want to stop tx either, but I have been dizzy, short of breath, and fell a couple times...from trippin over stuff/dogs etc.  Do you think I should be doing anything differently?  How do you go about telling a Dr you want procrit if he doesnt agree with it?  Thanks  OHC

[DoubleDose]

You did not achieve the necessary 12 week, 2-log drop.  You would have needed a viral load of < 20,700 IU at week 12.(just drop two zeros off the baseline viral load 2,070,000 to see 2-log point)  You were at 55,000 at week 12.  By most studies available, odds of SVR in this case would be less than 3% at best.

You probably need to re-strategize with your doc...either dosage adjustment while in progress (upwards, of course), or possibly stop, take a short break, and start a more effective tx regimen.  You may consider switching to Peg-Intron, using weight based dosing, higher dosages of Pegasys (if they will allow that),or some sort of induction/daily dosing for a month or two with Infergen, leading into Pegylated/Riba for long term.

Bottom line though, is that the log drop as you have detailed your progress, is definitely UNDER 2-log drop criteria for the critical 12 week point.  I would not waste a lot of time continuing forward at your current dosage levels, in light of this info.  Your chances would be very minimal.

Make sure your doc has all the latest viral kinetics info. so he can properly guide you.  You ARE responding, just too slowly to get cured.  Often a new, higher dose regime will do the trick.  No guarantees though.

[sugie]

More questions about numbers. Something didn't look right so I pulled out my test results and it wasn't right. I'm still not sure,,did I do a two log drop or not????????(cuz my Dr. said yes)

had first VL done on......3-19 was 2,070,000 IU/ml

waited a while before I got my drugs (wasn't happy about it)
1st shot not till 5-10

at 4 weeks on ............6-4 VL was 451,000 IU/ml
at 12 weeks on............7-28 VL was 55,600 IU/ml
last one,19 weeks on.......9-15 VL was 4,120 IU/ml

If anyone could do the math, I'd appreciate it! Me and numbers were never really friends. (But I did double check these figures and that's what the lab reports say) Thanks for patience. Didn't think I was foggy but obviously,,,,its hard to remember when ya don't really feel good very often.