12 week labs & headaches from hell!

[Lady Lauri]

  My trial cood. is out on vacation, but went in to send me labs/call me :}

Still UND. Heptimax test was done at week 4 (we 'snuck' in :} and Human genome Sciences supposadly using sensitive testing (say that right??)
4 weeks VL/heptimax test was -5 (or 5?)...what's that mean?
She said "my honest opinion, don't worry about staying UND, SVR".
Also...the only 'range' I don't have on my chart is ANC, what is normal range?

Labs were: AST 26, ALT 18, RBC 3.79, Hgb 12.6, Hct 37.6, WBC 3.08, ANC 1.65, TSH 1.685, Free T4 0.85, HCV Quant Not Detected

  Looks good? and why do I still feel so bad, LOL??!!
  I am drinking water, tho force feeding and drinking at this point (gotta love breyers ice cream tho, I can almost always eat that :} so is not helping the headaches, muscle aches. Man...head and legs hurt! (whining while counting my blessings and only 10 more weeks:}

Soooo......jmjm, anyone, with the heptimax and/or TMA testing......am I pretty safe thus far after all the dose reducing been done? Is my reasoning of being sure another TMA is done towards end of tx and if any trace at all is there, doing more weeks a good plan?

Am I making any sense here cause it sure is hard writing it as I am thinking it, LOL??

  Thanks ..............................LL

[Lady Lauri]

ala....not even going to try and dig for info. yet on this new look......
how long ago was that? The 'lost' 12 week labs?

Buzz.......
with a pleasant, puzzled, dingy look .....(like as I work this new forum!)..........why the 'wow' on the 0.865 TSH? Please explain :{
I have normal range as  0.35 -5.5 ,  therefore...huh???
I don't get it:{...any of it on this thyroid count deal.

LL

[buzz01]

Wow, 0.865 was your TSH count before starting tx?

Remember, the lower the TSH, the more Hyper you become. The Higher the TSH, the more Hypo (under active) you are...every individuals range is different.

LOL - yes, for majority of individuals who experience a thyroid storm on tx, the thyroid does return to normal post tx.

hahaha - Hypo thyroid can make you tired, lowers metabolism and I guess can contribute to being over weight...lol...

But yes, it can cause headaches....they should monitor your thyroid levels every month.

[alagirl]

For whatever reason, 12 weeks weren't in my file when I went in and then the next day I was back in the hospital again for more blood.  I called in finally though, still UND/NEG.

[Lady Lauri]

  Does it go back to normal after tx? Thought otherwise.

Pre tx count (screening) was 0.865
Starting tx (day of) was   0.975

  Now I am lost in this as my normal range No.'s (list I have) say 0.35 -5.5 ?
Would it be shallow of me to ask which one makes me fat :} ? I don't know a lot about either as never had any problems with it, nor what it can cause. Seems like it could add to the headaches tho.

                              Thanks, LL

[buzz01]

Lady, you have enough going on now...don't be concerned about thyroid issues beyond the end of tx. Compared to HCV, a thyroid issue is no big deal - lol
The key to remember about thyroid issues on tx is that as soon as you're off tx, the counts usually return to normal.

It would be extremely helpful to know what your basline thyroid count was pre tx.....

[Lady Lauri]

  cba....THANK YOU! Not sure why she couldn't answer that. Was waiting to ask Dr. on Friday.
How is it going on the Albumin? How are you doing with it?

jmjm....."the PCR test that Human Genome does is <50"................
Where does this one rank on the testing?

Buzz.........thank you, going to dig out labs and check that out. I was told if thyroid problems occur, your stuck with it and pill's the rest of your life, anyone know how true that is? I have always been pretty 'fit', small......would really PO me if I end up done with tx and gain 100lbs, LOL!

                                                       As always, thanks for all input,   LL

[Lady Lauri]

Forgetting my own threads!

loosenup...thanks:} Compared to MANY, I'm doing great. You hang in there too Ms.UND :}

merrybe........you made perfect sense and did not know that on the water! A bit nervous on the reductions also, but going the 24 weeks on lowered.

mouse..........GREAT! Hoping for that log drop, keep the faith in you :}, your pretty d*m determined, strong willed.

kcrandy....thank you dear. I'm one of those anal correct spelling freaks so writing on brain fog is taking a looong time :} Hope your feeling well, hanging in there too.

                                                                                      LL

[cba51]

I am on the Albumin Interferon. My trial nurse told me that the PCR test that Human Genome does is <50

Big Al

[buzz01]

Congrats on being undectable....

Question re: your TSH level. Do you know what your level was pre tx?  1.6 is in the range but on the lower end which means you're leaning towards being Hyper Thyroid.

the TSH counts are reversed...the lower the TSH means Hyper Thyroid and the Higher the TSH  means Hypo under active Thyroid....

Dig thru your labs to see if they checked it before you started tx.....I ask this becuase Hyper Thyroid can cause bad headaches......but so can tx...so just check it would be my advice.... :)

[kcrandy]

way to go ll.  glad you have reached the und. almost there you can see the end coming in your sights and at the end you will see a huge sign that reads  "SVR" ahead.   : O )


ps dont worry to much about your writing with brain fog all of us have it to so what you write looks prefecttlyytr  fniebnfe lol

[jmjm530]

"UND" means no virus down to the sensitivity of the test used. So, for example, if the test has a sensitivity of 50 IU/ml, than UND for this test would usually be noted
as "<50" and placed in the "normal range" column. If the test used had a sensitivity of
5 IU/ml, then UND would usually be noted as "<5". Sometimes for UND, they use the phrase "no virus detected" or something simliar.

RVR stands for rapid viral response. It usually means UND at week 4,  but sometimes I've seen it used to mean a two-log drop by week 4.  

It's unfortunate that your nurse doesn't appear to have the information you want in terms of the tests used. Can you request a hard copy of your bloodwork? Personally, I wouldn't let it rest until I found out what the tests were and what the sensitivities were, but I'm not always the favorite patient in the office, although in the end, I find that they do respect you for getting information that you have every right to know.

All the best,

-- Jim

[FloridaMouse]

Hey Lauri,

Mondays labs said my ANC got back up to 900!  See, I had faith in me.  Next labs are on Monday the 7th... and I'll be doing my 4 week PCR then.  I'm hoping for a 1 log drop at 4 weeks.  Hgb has been dropping 1 point each week but I'm still staying in the normal range.  Thank goodness I started with a high hgb.

Mouse

[merryBe]

congrats on your UND, that's great news. Part of your muscle pain could be from too much hydration which is as bad as not enough. you need calcium and electrolytes, and in the heat of florida you can get low on these when drinking lots of water.

I'm not an expert on genotype 2, or any of them, but have read some sad regrets from people who relasped after dose reductions.
these drugs do kick out butzs and aren't for the faint of heart, but the reason to keep hammering in the tx is to keep mutating and chopping up any little hiding virions thinking of setting up shop, and to do it long enough to permanently destroy their ability to reproduce. Dosage reduction tends to give viruses more of a fighting chance to adapt.....kinda like....can you swim in a pool with too much chlorine......well....if it's a little too much, yes you can.....if it's a lot too much it's burn your skin/eyes/even damage your lungs......same is true here, keeping the highest tolerable dosage is to keep your virus from making a comeback swimmingly.....having adapted to the "low chlorine level" so to speak.  Does this make sense??
MaryB

[loosenup]

Great news and congrats!  It would be great to go through tx without any sides, but when I received the news yesterday of being und, I say bring it on.....I can fight anything now.  And you can too.  Hang in there as so many people say it does get better and we have to believe that.
My best
Diana

[Lady Lauri]

  You check into that new Dr. yet  :}  ??

                                                                      LL

[Lady Lauri]

  sfbay........will ask about those pain killers. I'm very good at doing only as needed (not for the buzz, don't even like the buzz :}

Ala....haven't been online barely at all, don't see a post on your 12 weeks you were to get yesterday??  Did you get them?

Beamish....as always.....Thank you for your encouragement :}
(no riding this week :{

                                                                                                  LL

                                    

[Lady Lauri]

  Update on your labs?? What's happened with the ANC?

                                                       LL

[Lady Lauri]

  No online time this week! Company can go now so I can go back to my tx hole! :}

  Human Genome Sciences is the company funding/doing the Albumin Interferon (AKA Albuferon) trial. I got to Shands just in time to be in it with Geno 2 and 'drew' the standard Peg/Riba, not the Albumin. Someone here is on the Albumin ( forgot, surprise, surprise). Had asked them about how it's going on that drug but got lost in the shuffle of tx and post.
  I can't seem to get a straight answer on which test they use and supposedly even trial nurse/coordinator doesn't get all the info. from them. she'd said something....not 'quoting' too well these days.....about it being '15'...that make sense? (15 sensitivity? Still haven't gotten this down!)

  And BTW….what is the exact difference between RVR and UND? I know ‘rapid viral response’ and ‘undetectable’……they’ll use both and I’d assumed UND is the best, RVR when VL drops fast, etc.

                                                               Thanks, LL

[beamishboy]

lauri..yrnumbers are Great...the >5 is a very good sensitivity test..You are a vrus butt kiking Dragonslayr..hang tuff and SVR is yours! GOODLUCK

[jmjm530]

Princess,

Hard to tell exactly what is going on, but if you don't have confidence in your current treatment doctor, try and get another consult ASAP from a liver specialist (hepatologist). Reducing Peg is sometimes necessary but unclear if in your case. Usually this happens only if ANC is below 500, but even then many docs use the helper drug, Neupogen Reducing Peg can also reduce your chances of SVR.

LL,

Yes, you need hard copy of the labs to see what is what.

"5" is the sensitivity of Heptimax, unlcear from your post what is the sensitivity of your week 12 test, and especially considering your reduction in Peg dose, I'd ask for a very sensitive viral load test like Heptimax every 4 weeks during treatment. Yes, ANC 1.65 translates to 1650.

BTW who is "Human Genome" you keep referring to. Also, exactly what trial are you in?

Happy New Year,

-- Jim



-- Jim

[alagirl]

Your results are great!  I had my week 12 pulled Friday morning before taking my meds or interferon shot.  I get my results of my week 12 on Wednesday - just cause I'm too lazy to call in before Wednesday actually, I happen to have an appointment that day, lol.  

Wow, I would LOVE to have your blood count.  You are able to keep your red blood cell numbers up really well despite the ribovirin so that is really really good,

[sfbaygirl]

Congrats!!!! You are on your way to SVR.  I have had major headaches on tx and off. I take Fiorcet with codiene. this has some tylenol, but really helps headaches. I have had them my whole life. I used to take Fiorinal with Codiene which is asprin, butabital and codiene. Helps a lot for migraines and headaches. Ask your Dr. about them, not big time narcotics or anything.  I hate headaches!!

[FloridaMouse]

Hey there Lauri...

Pain is o.k. so far.  My local rheumy has me on Tramadol/Ultram and Shands recommended that they put me on Celebrex when I started tx to try to keep the RA flares to a minimum.  So far I'm getting by with this regimine.  I'm pretty confident that  my local GI, Rheumy and PCP will not let me suffer.

I'll get that ANC back up.  I'm really willing it up to 1000 and it best listen to me LOL.  Yeppers I do hear ya all the way up there in Ocala.  You hearing me all the way down here in Sebastian?

Princess,

yeah, I'm beginning to believe your doc could go into the idiot classification.  I have a pal on another board (Lauri, you met her, it's Marcie, the 6 foot tall gal that was at the campout) whose doctor definately fell into the idiot classification.  In the 24 weeks that she treated he  never did a metabolic profile on her... throughout her entire treatment this girl had no clue what her electrolytes were doing.  Not to mention he hadn't even heard of Neupogen until she insisted he put her on it before reducing her.  There are some real wieners out there.

Mouse

[PRINCESS5121]

my dr i think is an idiot.im learning more in this form than him.i gave myself 5th injection today.since my wbc count dropped from 4.0 prior to treatment and i have cronic fatigue,but rbc good.he told me he wanted to reduce the prgasus to 135 this time  rather than using the rescue drug just yet.i am going to get another dr.i asked him about getting a viral load test for week 4 as i am day 26 into treatment,and he told me he dont do those labs till 8 weeks into treatment.he said he was concerned with my wbc already low prior to tx,and now its 2.1 already,and my neuts were low to.this is why he made the decision to reduce shot this time........he said he was afraid i could go dangerously low if i was to inject the entire 180.   and thankyou  !!  :-)