Has anyone taken Procrit (epo) before their hemoglobin went to 10?

[Mikkimoe]

Hi,

My symptoms are pretty severe lately and am considering a drop in my meds but am also thinking that Procit may help get me out of the water. My doctor is under the same standard as most that it has to drop below 10. Mine has dropped from 14.5 to 12 in less then 3 months. I have extreme fatigue, heart pressure and palpatations, very dizzy when I stand, very short of breath, heart beating out of my chest feeling, head pounding etc. Pretty much totally bed ridden. Geno 2B - UND at 3.5 wks - 6 wks into tx.

My doctor responds well to any research studies or articles - do any of you happen to have one that indicates it's OK to give procrit for readings that are above 10?

Thanks,

Mikki

[jmjm530]

Many doctors no longer go by the "magic" number 10, but look at rate of drop combined with symptons. In my case, I started Procrit with hemoglobin 11.6 which was around a 3 point drop from baseline in a period of 2-3 weeks. Many here have also posted that they started Procrit in the 11's. And while your drop rate wasn't as sharp as mine, how one reacts to a drop in hemoglobin is very individual. We've seen some here doing OK with hgb below 10 and some ending up in the ER with hemglobin in the 11's.

While there could be other causes as you've stated in other posts, the symptons described are classic anemia, and while the symptons you state have been reported -- in totality they do not seem at all normal for someone on treatment and to this medically untrained person seem quite serious and in need of attention right away.

One point to make is that Procrit (epo) is not a quick fix and can take 2-4 weeks to kick in. So while getting started now may not help you immediately, it could help you a few weeks down the road when the only recourse might be a dose reduction of ribavirin.

Meanwhile, a riba reduction may be in order as you are UND and a geno 2, given your symptons. You've also mentioned dehydration in the past and I personally found a day in the ER on IV fluids did wonders for me in a similar position. Not sure if they can write you an rx for IV fluids at home (administered by a nurse I assume) but might be worth a call to your doc.

Hope you feel better soon.

-- Jim

[jmjm530]

Here's a case for administering Procrit with Dr. Gish's name attached, a leading hepatologist: http://tinyurl.com/4cwqff  (see page 33)

You are only .5 g/dl away from his third guideline and again how one reacts to hgb decline is very individual.


If Hb <10.0 g/dL in women, or 11g/dL in men
• Hgb decrease greater than 2g/dl in a 4 week period in persons with history of CAD.
• Hgb decreases greater than 3g/dL from start of treatment and patient experiencing severe fatigue

[kimmypoo2]

i hope you get to feeling better soon hun.....im having a bad week to ...we are gonna make it together...if its anything i can do  just send me a note

[jmjm530]

First sentence should have read in part "Here's a case for administering Procrit other than  the magic number "10". I also believe I read similar on one of the Procrit package insert materials although could not find it today. As to members here, FLGuy sticks out as someone who I believe started Procrit in the 11's but there were a number of others as well.

[Bill1954]

You might be interested in a remark made to me by the HCV treatment nurse at University of California, Davis (UCD) on May 5; I was asked to attend a friend’s initial consult at the Hepatology dept. to provide a second set of ears.

They have changed their epo protocol to reflect the FDA black box warnings dated March 9, 2007. For more info:

http://www.medpagetoday.com/ProductAlert/Prescriptions/tb/5231

While they apparently used to issue epo if the net drop/symptoms warranted, i.e; net drop of 3 grams over a four week period, they have since applied the absolute limit of <10.0 g/dL to prescribe for HCV patients.

This might not apply to your situation; however, I’d suggest you read the link above before clamoring for epo; be careful what you wish for :o).

I’ve been on a lot of ribavirin over a three year period, and have sustained large initial drops of Hbg in short periods of time (approx 5 grams/5 weeks), but remained asymptomatic throughout.

Read the link above- if MH software screens the link, make sure to message me.

All the best to you,

Bill

[jmjm530]

I'm not sure if the new UCD guidelines are lawyer or medically driven -- really have no idea -- but given Mikki's symptons, it seems that the choice will soon be between a riba reduction or Procrit. She should by all means weigh the relative risks of both, perhaps consulting with another hepatologist to gain more perspective. Your case is remarkable given your activity levels on treatment with hgb drops but Mikki seems to be in very bad shape as I read it.

-- Jim

[Bill1954]

However, *Gish’s* office did offer epo to me at week 12 this treatment with an Hgb of 11.9 g/dL. This was on approx. December 12, 2006; about 9 months after the FDA warnings were issued. Go figure :o).

Bill

[Bill1954]

Agreed, Jim—

I’m apparently somewhat unique. My Mother always told me so too; (you’re one umm, weird kid, Bill :o). By no means does there seem to be a solid consensus on this subject, and I believe the individual’s history probably plays a large role in this decision, regardless how loud the facility’s counsel hollers :o).

I posted the link to the warnings for Mikki to investigate for her own knowledge; hopefully it will help her arrive at an informed decision. Good to see you up and posting lately,

Bill

[jmjm530]

Didn't want to come off too dismissive of Bill's bringing attention to the "Black Box Warnings".  

Since I've been off treatment for a couple of years now, I really don't know if my doc would have been as agressive with the Procrit, although my guess is that he would.

That's why I'm suggesting Mikki consult with one or more hepatologists to get the latest lay of the land on that issue.  The bigger point is that her symptons sound somewhat serious and if it's not Procrit, then a riba reduction seems very likely. There have been some studies that I believe show that reducing riba after UND is not as bad with geno 2's as once thought. But frankly I'm not up on the latest studies so I'd look into that.

-- Jim

[jmjm530]

Bill: My Mother always told me so too; (you’re one umm, weird kid, Bill :o). By no means does there seem to be a solid consensus on this subject
-------------------------------------------------------------------------------------

Our last two posts crossed but I was under the impression that there *was* a solid consensus that you were weird :)

[geterdone]

My Hgb went from 15.9 at the beginning of TX to 11.2 and hematocrit dropped from 45.9 to 32.5 by week 4 and started Procrit in week 5 and did not start to feel somewhat functional for another month or so but during that time it was a butt drag. I stayed on the Procrit through out treatment with a mean average of 13.4. So if the labs say get on the Procrit push hard for it.

jasper

[Mikkimoe]

Hi - Thanks for the research..I think my doc must of seen this because he seemed like he "could not" let me...not that he didn't want to let me. Mentioned something about insurance.... Would this effect insurance coverage for the drug?

My Hepa is out this week - his nurse left it in my "knowledgable hands" - serves me right for bringing in pounds of research everytime I see her. He gave a consent to decrease the Peg to 135. I am going to decrease the Rba to 600 as well. I see my regular doc on Wed - can he give me anything to help here? IV's etc.- feel very dehydrated, totally lethargic - drinking gatoraide and water but not sure enough.
I think I'm drinking 60 oz (I weigh 102) but not sure it's working.

I was pretty symptomatic pre-tx as well - I really think the Enbrel for my RA is a giant Booster shot for this Peg. Been known to be a good 3rd component - too bad just the one study.

Do you guys think I'll be OK with these cuts? I feel like I may be doing more harm then good  these days- worried about my already compromised heart.

Thanks again...mik

[FloridaMouse]

I was prescribed Aranesp (same as Procrit only you inject it every other week) when I dropped to 10.5.  My doctor is also of the opinion of prescribing it based upon a patients symptoms.

Mouse

[Mikkimoe]

Hector posted this in another thread - last paragraph is on target for Decrease of meds-
_____________

Understanding HCV Nonresponse and Identifying Candidates for Retreatment
By: Mitchell L. Shiffman, MD

"Rapid virologic response (UND by week 4) occurs in approximately 15% of patients with HCV genotype 1 and 66% of patients with HCV genotypes 2 or 3 treated with peginterferon alfa and ribavirin. It is critically important to identify patients with RVR because these patients have up to a 90% SVR rate if they remain on treatment for 48 weeks for HCV genotype 1 infections (and 24 weeks for HCV genotype 2 and 3 infections)."

"Previous studies have demonstrated that approximately 35% of genotype 1 patients achieve undetectable HCV RNA between Week 4 and 12 of treatment. Recently, these patients have been termed as having a “complete” EVR."

"It is critically important to recognize the point at which a patient achieves undetectable HCV RNA during treatment as this is directly related to the likelihood of achieving a SVR. In other words, the later a patient achieves undetectable HCV RNA during treatment, the higher the likelihood that the patient will relapse after treatment is discontinued following the standard duration of therapy (24 weeks for genotypes 2/3 and 48 weeks for genotype 1) Three recent studies have now demonstrated that relapse can be significantly reduced in slow-to-respond genotype 1 patients—those who achieve undetectable HCV RNA after Week 12—by extending the duration of treatment from 48 to 72 weeks. In each of these studies, the relapse rate was reduced from more than 50% to less than 20%."

"Several studies have now demonstrated that mild reductions in the doses of either peginterferon alfa and/or ribavirin will not adversely affect the chance of achieving SVR, especially if this strategy is employed after the patient achieves undetectable HCV RNA. By contrast, interrupting treatment for more than 7 days because of adverse events leads to breakthrough and relapse. Therefore, it is the recommendation of this author to reduce ribavirin stepwise by 200 mg every 2-4 weeks until adverse events either resolve or are tolerable. Peginterferon alfa-2a can be reduced from 180 to 135 µg/week and peginterferon alfa-2b from 1.5 to 1.0 µg/kg/week. Neither peginterferon alfa nor ribavirin dosing should be interrupted unless the adverse event is particularly severe and there is a concern for patient safety. Whenever the doses of peginterferon alfa and ribavirin are modified or temporarily interrupted, HCV RNA testing should be performed again to ensure that breakthrough has not occurred."

[Bill1954]

“…he [my doc}seemed like he "could not" let me...not that he didn't want to let me. Mentioned something about insurance.... Would this effect insurance coverage for the drug?...”.

I certainly can’t answer that with any authority; others here have anecdotally reported problems obtaining insurance authorization for epo without meeting the ins. company’s guidelines. If you have the energy, you might contact your agent or company directly and inquire; that will help take some of the guesswork out of this.

At 104 lbs (47 kg) a dose reduction to 600 mg ribavirin would leave you at 14.3 mg/kg; actually a healthy therapeutic target dose, but I’m unaware of any studies that focus on GT-2, <800 mg riba, and equate with SVR rates. Maybe someone else will chime in?

Decreasing the IFN might help with anemia slightly; I believe hemolytic anemia secondary to combo treatment is of mixed etiology; it’s not caused solely by the riba.

http://tinyurl.com/5lfvfh

“…A common adverse effect associated with this therapy is anemia, which is frequently referred to as mixed anemia because of the synergistic contribution of the interferons and ribavirin. The effect of ribavirin on the development of anemia is considered greater than that of interferon.

Can your PCP doctor get you an emergency referral to a hematologist and let them handle the blood? Possibly one that has experience working with HCV patients?
Call your PCP regardless, just to get on record.

You mentioned having a “compromised heart”; make *sure* that any health care provider is aware of any history of cardiac events.

Additionally, consider ‘burning’ a standing order for CBC, and get an accurate, up to date picture to approach your PCP with. Although everything you describe sounds like your anemic, we *could* be getting ahead of ourselves here.

Sorry to hear you’re taking this on the chin; be well and let us know how things progress—

Bill

[Bill1954]

PS- Consider tagging a metabolic panel to the CBC to rule out dehydration, eh? And always remember that ER is available if you feel like you’re getting into trouble.

Bill

[Bill1954]

You would absolutely terrorize any one of the current political candidates with your quotes; “Jmjm reporting from the press room, Washington DC”, LOL!

Good eye, my friend :o)

[Mikkimoe]

Thanks - good ideas - I have an apt for Wed but will try to bump it up and get a hemotologist involved -  I only go to the emergency room if I stop breathing or my heart stops usually. (very bad history here)

It's just so complicated with the heart issues and the Enbrel and the RA, not to mention still on 5 mg of prednisone and all my other fun problems - my history on my profile is an interesting read. That's why I research - Docs just can't  figure me out. (I have 10 docs and fortunately great insurance) I had complete work ups before tx on my heart etc., lots of PVC (premature ventricular contractions) and a slightly enlarged aortia and about 4 other minor things that are not much by themselves but can compromise things.

I am one day late on the Peg - have to take it tonight...but am pretty nervous about it.
I just wish the room would stop spinning when I stand up and I could stay standing for even a minute with out having to sit down or pass out....wonder if I have some sort of inner ear virus - the tinnitus is unbearable as well.

I guess I'll just take the 135mg like the doc suggested for tonight and continue researching tomorrow - you guys are such a great help - thanks so much

PS - oh yea I forgot - I was exposed to dangerous materials for 10 years and most of the people I worked with are dead now (early space shuttle program - taught tile bonding) Might have something to do with things too huh?

[jmjm530]

Given your heart history and current symptons, it seems you should probably have an EKG right away unless you've had one since the symptons became worse. Hope I'm not coming off as alarmist,  but the severity of the symptons you describe are not typical for someone on treatment and your doctor's seem quite cavalier in their approach unless I'm not getting the whole picture. It's their job to both agressively monitor and help you though times like this on treatment. So please contact your cardiologist to make sure things are relatively OK and heeds Bill's advice about using the ER as a resource. An outside hematologist might or might not help -- seen it both ways here -- in terms of adding knowledge points to HCV treatment, but a second consult with a hepatologist is always a good idea when things aren't working out and especially when the doctor's away as in your case. Personally, I just wouldn't let things ride given your symptons.

All the best,

-- Jim

[Bill1954]

How are you feeling this morning?

Bill

[Trish77]

Hi Mikki,

I haven't said anything so far cause I don't have any insight or info to offer you.  What I am is very concerned about your symptoms.  With all of your additional issues, including heart, etc. to have low hemoglobin on top of it would be worse for you than the average tx'ing person, seems to me from a logical point of view.  If anemia affects the oxygen getting to the heart, which it does, when our rbc drops - less oxygen in the blood, less to the heart - then I can understand why it might hit you harder than someone else.  

The question then becomes, which is what you are grappling with, what gets done about it.  I wish you good luck in sorting through your options.  I wish you could take procrit and bring the anemia under control and avoid the dosage reduction ... seems that would be most prudent in the early stages rather than a dosage reduction but your situation is rather unique with your heart issues thrown into the mix.  I wonder if that's why your doc is avoiding going the Procrit route and I did read that insurance companies have put limits on when Procrit can be administered because of the "black box" warnings.  So perhaps your doctor may need to make a case to the insurance company for you IF he thinks Procrit is warranted.  Just a thought and I'm certainly no medical expert or expert at all.

I'm thinking of you and wishing you good luck and hoping you get all this sorted out.

Please let us know how you're doing ... concern for you is a GOOD thing.  :)  

Take care, Mikki.

Trish

[Mikkimoe]

I'm still here - new migrain on the right side - still weak - had my typical flu night following the shot (did 135 mg) Heart is a little less jumpy this morning. Sleeping constantly wich is so weird for me - but I'll take it. Still dizzy and out of breath. It's a shame I live in the boonies sort of speak - no real docs here. Have to go to LA/Orange county for my docs and the wait times are crazy as you all know. My local GP has a full lab and about 5 other docs in his office so hope we can get something sorted out tomorrow. From what I can assume it is anemia and it's agrivating my heart. I did put a call into my cardio - waiting on a return call. I spoke to the back up doc for my Hepa at UCI and she said if I get arm or shoulder pain to go to the ER - That the tx can be really rough on some people - duh - great help...swear I was in a third world country...

I think if I get through this maybe I should switch to the Peg-Intron so it can leave my system faster...gotta rest...thanks for checking on me.

[nygirl7]

Sorry I wouldn't let anyone drop my meds for any reason in the entire world.  EVERY doctor I went to Including Jacobson said it was CRUCIAL to stay where you are.

I dropped six full points in only just over one week.  From 15+ to 9.0

I literally thought I was going to die and have to stop treatment.  The addition of epo only helped when I went on twice a week dosage but it kept it up around 10.5.

YOU CAN DO IT. It is horrible but if you can just hang in until the Epo hits you will feel well enough make it.  Don't drop meds or change meds - give it a chance Mikki.  Please you can if I could........I am the BIGGEST baby in the world...and I listened to everyone in here and just hung in. Once it is fixed you'll be glad you did.

(PS I don't think you can just switch from Pegasys to PegIntron without stopping in between honey they are two different meds).

[nygirl7]

Hey i was going to say the same thing as above...........can you get into a hemo doc and explain? You do NEED this stuff and you need it asap.

You see it's ALREADY causing you to think of dropping and stopping!!!!!!!

Find a hemo as quick as you can and HANG ON FRIEND YOU CAN DO IT!!!!!!!!  I promise........just give it a little longer!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[jmjm530]

I hope you've heard from your cardio by now. But if not, consider going to the ER at least for an EKG and maybe some IV fluids. Honestly, "waiting until you get arm or shoulder pain" (possible signs of heart attack) sounds like pretty grisly advice. I'd be a bit more proactive.

Hope things get better soon.

-- Jim

[medicmommy]

Feel like a human lab rat yet? :)  Here's one more thing to add to list of "check" things...Have your TSH (Thyroid level) checked as well...As I've recently discovered, if you are hyperthyroid, it can give you several of the same symptoms that txing sides give you...And seems to further aggravate the current sides...Hang in there. Get your heart rhythm checked...As the drops in you HGB and HCT slow, the dizzy, short of air, chest ache and head pounding stuff will lessen...Get your electrolytes checked as well (I think jmjm mentioned this too) If they are on the borderline of being low, you can feel pretty cr*ppy as well...I'm thinking of begging my doc for oxygen...LOL...My HGB labs dropped 7 points in 3 weeks shortly after I started txing...Yep...I'm hip to your struggle...(((((((((((HUGZ))))))))))))                              ~Melinda

[Mikkimoe]

Lab Rat here...

So took all your advice - got all the tests...long day...Looks like I'm borderline everything - anemic, dehydrated, malnurished. But am iron amemic (most are on tx) and my heart PVC's are pretty rampid so they put me on atenenol and 3 milk shakes a day - gotta love boondocks medicine.. They did say that they have to adhire to the hmg of 10 or less for the procrit but with a strong case my Hepatologist can over ride it. The migrains are doing me in so they gave me something else to try since the Zomig and Maxalt did nothing...Fiorinal - just a slight improvement so far. The palpatations do seem a bit better though.

NYgal - thanks for the pep talk - I needed it!

I'm hanging in there - just thank god I have someone taking care of me...you can't be serious that people actually work on this tx....I can barely get to the bathroom.

But doc did say my weight is a big factor - I have to gain weight - It's hard to eat with a mouth full of sores and a tounge that has no skin on it from sticking to the roof of my mouth while I sleep.

Hugs and Thanks for hanging through this with me.

Mikki

[Trish77]

Good to hear from you and good to know that they're addressing your issues.  I hope they're going to keep a closer eye on you the next while.  Do they not think you have a strong enough case now for the Hepatologist to override the 10 HGB level for procrit?

Just so you know...I'm not being hit anything like you are on tx so I'm able to work. If I was hit like you, I'd be down for the count too. I'm sorry things are going so difficult for you and I'm hoping that things will eventually settle out for you.  

You might want to get some popsicles, Mikki.  You need the hydration.  Whatever works.  Just keep hydrating.  

So glad you got to the docs and keep it up.  You're worth it.

Take care.

Trish

[medicmommy]

Hey lady! How are you holding up? -A suggestion made to me about the mouth issues...for nutrition try home-made eggnog..It has a lot of protien and is soothing to the raw surfaces...Swish with aloe juice, holding mouthfuls for 3-5 min at a time...it doesn't taste that great, but it's very healing...also, for the night time...Oragel makes a mouth moisturizer called dry mouth moisturizing gel...I've used it for the "leather tongue" issue and it works pretty good...It seems to last most of the night...and for the external sores and really bad skin areas, good old-fashioned bag balm...aloe gel work really good on the mouth corner cracks too...Good luck! This is the worst part of the txing -the "adjustment" phase...(((((((((((((((((((((((((((HUGZ)))))))))))))))))))))))))                                                                        ~Melinda

[Deb_c430]

Hydrate, keep mouth clean,  I used a mouth moisturizer  when i was in hospital, they work good!   I wake up 3 or  4 times a night and chug water.

I have been using a pre brushing rinse with peroxide in it. made by Listerine, burns like crazy for a minute or two, but think it is really helping keeping them under control.

What about your heart and procrit Mikkie?   You scare me sometimes.  

Trish is right you deserve it!  Your a fighter and giving up is not an option I know!  But be careful also.

Hugs !

Deb

[Mikkimoe]

OMG - I feel like I'm going to burst from drinking so much - (that or go to the hospital for an IV - I'll take bloating).

Great mouth ideas and the egg nog - great idea...the shakes are way to sweet.

Heart is feeling better - pills help -
I've started taking one riba at a time - breakfast - lunch and dinner and before bed. Not sure I'm suppose to but seems to work better for the nausia and dizzyness. I just took the 135 of peg this week - didn't want to risk a heart attack, plus the 180 is based on a 200 lb person and being 100 lbs doc thought it would be OK (also I was EVR at 3.5 wks and am 2b)..but if i feel better will go back up more next week.

Thanks for the great ideas - I have hubby running to the store as we speak.

[jmjm530]

Mikki: hey did say that they have to adhire to the hmg of 10 or less for the procrit but with a strong case my Hepatologist can over ride it.
------------------
Glad you seem to be feeling a little better. Not sure who "they" are, but people get Procrit all the time with hemoglobin over 10 unless things have changed recently. Given your heat issues, not sure what they are waiting for unless they think the Procrit will do more harm then good. If it's simply an insurance guideline thing, it should be able to be easily orveridden with a doctor's note.

BTW many liver specialist, including mine, suggest marijuana (medical of course) as a first line treatment for both significant nausea and to boost appetitite.

-- Jim

[jmjm530]

Depending on how you tolerate the milkshakes, you might want to check out Ensure, or other such formulations designed for nutritionally balanced weight gain, often prescribed to chemo patients: http://ensure.com/products/

[Trish77]

I'm starting to feel better about how you're doing ... things are happening, solutions are coming your way and I'm hoping this continues for you.  Take good care, Mikki.

Trish

[Wassup]

I'm quite relieved that you finally got to see a Dr. Re; your heart, dizziness, extreme fatigue, etc. I know how stoic you are, but you really had me scared. I know how strong you are too, but I'm not sure you do. VERY STRONG but not invincable! I know that you're home alone most days, and some nights, So, if you're gunna wait til you can hardly drag yourself to the loo, maybe you should get one of those First Alert Thingies, (in case you fall and can't get up).  Please take care of yourself, This Tx stuff is difficult at best, but it's not supposed to be lethal to the patient, just the virus.  I think of you every day and hope you're out playing with your horses really soon.  I know how much you must be missing them.  God Speed, Sweetie!!!  Hugs and hugs,  Ant B

[Mikkimoe]

Missed you Bevy - how are you? Guess you know how I'm doing...but I'm actually feeling a little better today...kind of like a miricle...I actually like watered my plants and cut a vase of roses...(then collapsed lol).

My hubby has been canceling trips to take care of me - and totes me over to pet my horsey kids on nights that i can make it - Thank God for Golf carts. I made it through my arthritis walk on Sunday (in a wheelchair with a head rest and an umbrella) but had a great feeling of accomplishment any way - think it put me on the road to recovery...our team collected about 9,0000 - whooopi.

Thanks Trish and Jim and all for getting me through this - the single riba at a time seems to really be healping with the nausia and tinitis - and since I cut the peg a smidge the migrains are subsiding and the heart meds are helping too. Just wish this dizzy, room spinning thing when I stand would mellow out....

Hugs...mikmo

[Trish77]

It's good to hear from you.  What you did with the arthritis walk and it making you feel better, my courses do that for me.  Those things that give you a mental or emotional boost also boost your internal pool of resources somehow and gives you more resolve.  

I'm glad your nausea and tinnitus is subsiding somewhat.  How's drinking those shakes coming along?  Still wondering about the procrit for your anemia ... can't help it!  Has the decrease in the Peg changed your hgb levels or too soon to tell?  

Keep at it, Mikki.  Don't let it get out of hand, get the care you need.  Glad hubby is taking good care of you.  

Stay in touch.

Trish

[Wassup]

Hi Sweetie, I'm soooo glad you're feeling a little better.  If we could just take a few pounds off of me and put em on you, we'd both be in better shape.  I'm sending you mental meals of love and support, topped with hugs.  PS Also delighted to hear that you've been able to see your 4 legged babies.  That is some of the best medicine you get.  I've seen it with my own eyes. Thank your hubby for me, that he's been spending more time with you. It must be hard trying to juggle work, critters, wife w/ medical issues, etc.  Give him a hug from me too,   Bevy

[Mikkimoe]

So bevy you've got some pounds you can loan me - cool....can I get picky and ask for booobs and buns?.. .I feel like a stick person or kind of like a paper doll...get a little nervous on windy days.

Trish - I go back to Doctari Wed - we'll see what happens...just hope he doesn't boost the meds back up....I may self destruct...took my labs today so well see where I stand.

The RA finally raised it ugly demon head...knees feel like someone took a sledge hammer to them and I wish who ever tore my right shoulder off would put it back NOW.

RIBBBBBBBBAAAAAA    RAAAAAAAGGGGGGEEEEE   ROOOOOCKKKKS
I find throwing things helps with the pain....how about you?


OK just kidding...sorta...hugs all around....mikmo

[fuzzy1dar]

Sorry to here you're having such a difficult time...I hope you're feeling better today!  Did you ever get the  procrit?  I read thru this thread but having to cut thru the fog to get there (brain fog very thick lately lol) I don't remember if you started it yet!  
My hgb hit 9.6 and I'm having allot of the symptoms you described above...dizziness,  head pounding, heart palps, etc.  so I can somewhat relate to what you're going thru....it isn't easy.  I'm waiting for procrit to be approved and with the holiday can't get it until mid-wk.  I'm thinking maybe I should cut my riba down to 600 until I get the meds.  My doc isn't much help to me when I get in a bind....I found out recently she has only txed a few hcv patients.  Just my luck!  Any advice would be much appreciated.

Best of luck to ya....Darla

[Mikkimoe]

Not good not having a great doc - I've been on the phone with mine for the last 2 weekends for long spans of time - but kept me outta the ER (hate that place)We  cut my Riba from 4 pills to 3 (I divide them over breakfast - lunch and dinner) then the next day I take 3.5 pills (1.5 at breakfast) I get the generic ribasphere...they are small and break in half.
If I feel real bad on a 3.5 day - i'll stay on 3 for a few days....funny how just 100 mgs can make such a difference.  (I weigh 100lbs - so this should be OK) We cut the Peg to 135 from 180 the first week. 145 the second week and will bump up to 160 tomorrow and see what happens - usually extreme blinding migrains with me. I see the doc Wed we'll see if we need the procrit.  (PS I was UND at 3.5 wks)

[fuzzy1dar]

UND at 3.5 is great..congrats to you!  Are you geno2?  Wow!  you're tiny at 100lbs.  I would think 180mcg would be too much for someone your size. I hope you're feeling better! How did your doc appt go?   Do you need procrit? I've decided to cut my ribavirin to from 800mg to 600mg/day until I get the procrit ~ any day now I hope.  Been feeling better the last few days....except for this allergy or cold I have just won't let up.

[Mikkimoe]

yep cut mine - 600 and 145 prg... brought my hmg etc back up - I am lucky 2B...hope it stays that way :-)

[fuzzy1dar]

Glad to here you're doing well with the reduced meds!  How far are you?  I'm 2b also! 6 more wks to go!

best of everything to you!
Darla

[Mikkimoe]

Did I say i was doing well? Nice thought though....

My brain is on a permanant vacation, my body feels like the goul on night of the living dead, my energy makes the lowliest of slugs look like Big Brown in the horse race. My lungs forget to breath, my heart forgets to beat and my eyes forget to blink, my migrains keep me locked in dark rooms for days and the RA pain is off the 1 to 10 scale....but hey besides that I'm doing really good....really I have not lost my sence of humor completely and I still have hope....this is going to work if I kill myself doing it (whoops not such a far fetched statement)....for a real good time I have listed step by step blows on my profile page....don't want to discourage any newbees - but I knew in my pre-tx condition that things would be rough. Severe RA and low BMI (body mass) don't handle tx with a lot of grace.

How is everyone else doing?

They have cut my meds again and my tx time is now 16 weeks - so 8 more left to go....

I'll do this and so will you,

Take Care,

Mikmo

[IAmTheWalrus]

Hey, I just happened on this thread and wanted to say two things.
1. If it helps, the acute symptoms right after Peg shots became more manageable later in TX than in the early weeks for me. Maybe for you, too I hope.
2. I'm glad you are doing a bit better and haven't given up (nygirl gives great pep talks)
3. It is good that you still show a sense of humor
4. I know... I can't count!

Best to you,
Brent

[Wassup]

Hey cutems,  I was gunna mail you some lead soled boots ( In case of high winds), but then I thought, WHO"S gunna help you lift your feet to walk. Just tie a rope around your waist and attach the other end to the leg of the kitchen table, so you don't blow off the hill on your patio.  Or, you could put some bacon in your pocket so the dog can find you and fetch you home again?  I'll tell you what you're welcome to some of my rump, but the boobs are still new enough that I'm not willing to share them, just yet.  (Maybe when it gets a little hotter).  I weighed 115 LBS, TWO X-MAS' AGO.  The boobs are my consolation prize for having such a big butt.  Somebody stop me!!!!  I'll have more news 2moro, 2 wk.BT's and see dermatologist Re; mole on back. Later Punkin', hugs, Bv

[Mikkimoe]

Bevy - You are always good for a chuckle when I need it most - laying here in the dark in bed with sun glasses on to stand the glare of the computer screen on my lap....mega migrain = AGAIN...to many meds in me - tummy erupting...yi yi yi

Thanks - needed that...

Brian - good to hear from you...I can always count on you (get it....count...like 1,2,3...never mind - I'm fruit loops right now).

Got to make it...got to make it....chug chug chug

[nygirl7]

My hemo dropped six full points in just over one week.  It was literally hell for me. From 15+ down to 9. My doctor STILL didn't think I needed Procrit.

Of course, I insisted that i did and I won. He had wanted to send me for a chest xray to figure out why I was having trouble breathing and why I kept fainting.

Doctors...........................go figure.

Still at 12 that is a very high number and your insurance might refuse to pay for it.  I would start with them...........find out if you can get approval having such a high hemo number.  You've had a very slow decline honestly and I'm not sure why you are feeling the effects that badly...are you sure there is not an underlying issue that could be mimicking anemia?

[nygirl7]

Ps Mikki....if you can try not to reduce your meds please!  Under absolutely no circumstances should we ever allow someone to trick us into doing that. You're already at week 6!  Week 6!  You've only got to go to 24! You were UND at such an EARLY date that you know full well you are going to beat this thing!  If you can just hold on a little bit more...you'll definitely have it.  Don't take a chance and mess around with the meds. If your immune system hasn't had a long enough time to get into the groove and you drop some meds and the virus has a chance to come back in..................next treatmenT you'll have to do 48 weeks MINIMUM!

Hang in there but don't drop your meds.  Just don't you do it no matter how bad you feel! SVR is the goal and it hurts like hell now but.............if you hang in there it's almost all over already you are one of the "lucky" ones that only do 24 weeks...I would have given anything when I was into the 70th+ week of treatment to have stopped so long before!

Look at all the people who have viral breakthrough or relapse that don't even drop any dosages!  it's not worth it...you'd be so upset if you got back a PCR and it had a viral load next to it!

Don't take a chance with it.  Just don't.  YOU CAN DO IT HANG IN THERE!  I'll stay right here and push you along but do NOT drop any of your meds. 12 is a great number you can live with it.........just give your body time to acclimate to it and you'll see - the human body is unbelievable and it can adapt to anything....just give it some time to be ablel to do so!

YOU CAN DO IT!

[nygirl7]

Can they cut them more at this point?

[Mikkimoe]

Hi nygal,

Guess I should elaborate a bit.... I understand what your saying and totally agree with you but my situation is a lot more complex. I have severe RA and am on biogenetic injections that amplify the effects of the Peg. I have also had 2 episodes of autoimmune syndrome - a VERY scary event that only happens to people with RA on tx. Every joint in your body flares at once...it is more pain then anything you can ever concieve. You literallty cannot move. It lasted 8 hours and stopped. There is a 4% chance that the next time it will NEVER stop and I will be that way the rest of my life. My docs were going to pull me off all meds when it happened but I talked one of them into the reduction and am very OK with it. I refuse to end up coming out of this in worse shape then I came in.

I have done a GREAT deal of research and have 2 of the best Hepatologists in Southern California. I know what the ranges are in respect to Body mass and I am in the perfect relationship right now. My weight is 45 kg - the best range for the riba is 13mg per kg - that means I will need 585 and I am taking 600. The Peg is based on a 200 lb person - I am 1/2 that and could do fine on 90 but am staying at 145. I am still UND for now.

I also have RA anemia which is not really seen in your blood test - it is seen in your bone marrow...this complicates things as well and procrit will make it worse...I also have cardiac issues and the list goes on.  

So I'm rather unique and I agree that if I were a normal person I would totally stay the course, especially if I were a geno 1. (I am a 2b and was UND at 3.5 wks - so have a much better success rate). Thanks for your concerns, it really does help when I'm having days like today...mega migrain...laying in bed in the dark with sunglasses on just to handle seeing the computer screen on my lap and having to take that shot tonight (and this is the best day of the week - ha) And knowing it is going to blow my head outta the water and I'll be pucking all night and wanting to do like the doc said and take 90 - but thanks to your pep talk - I'm going to do the 145....ugh

Thanks again,

mikki

[Deb_c430]

I think if were anyone else, I would agree with NYG, to hang in there.

But you are whole nother  kettle of fish, your pre existing  conditions,  (Iam still stressed about your heart btw)  

They change things for you,   i feel your pain, in your joints I have the same way.

Add nerve damage pre existing,  I wanna scream.

Try and relax, do as your Doc says.

Hugs

[Mikkimoe]

Thanks deb - hey can we have a group Scream...kinda like a group hug but maybe more theraputic right now.


AHHHHHHHHHHHHHHRRRRRRRRRRRRRRRRRR

Ok - that's better

now a (((((((((((((((((((hug)))))))))))))))))))))))))

[TeriToo]

Hi. No one knows me here yet, but I wanted to share. Mikki, I had the relentless-take-u-to-your-knees migrain, projectile vomitting, running into walls, totally unable to put a sentence together, burning in my bones, rash all over me-felt and looked like someone threw hot water in my face. I went to the ER, and immediately was given IVs and three pints of blood. I stayed for four days. Everyone had to wear masks around me, even when I went home, so I didn't catch any thing. All of that is a blur..I can't remember..Anyway, they gave me procrit. I go to my hemotologist Tuesday. My number as of yesterday, is 9.6. They plan to start me on Procrit regular. Anyway, one of my points is..Go Get Checked..I am still getting lectures for letting it get that far. Also, if insurance doesn't pay,  do what I did. I am uninsured, and paying for specialists and labs is challenging enough. When I was told the peg/Rib for 48 weeks would cost $48,000, I knew that would burden my family. I called the maker and they agreed to supply it, totally free of charge. Thank God. The Procrit too. It can't hurt to ask. Being insured shouldn't matter..they are nice people and are glad to help. NOONE ASKS! It was hard for me, but I am so grateful. ASK! I am not trying to scare you, but please go get checked. Everyone seems to love you here, and I would like to offer you support also.

[Trish77]

Wise girl.  The goal is to stay alive and not do yourself more harm than good, if you can help it, with the roulette game that tx seems to be sometimes.  I know you're going to give this tx your best shot, no question about that ever entered my mind.  You'll hang in there with what you can tolerate and reduce only where you must, to prevent more harm than is reasonable on this tx.  SVR is the cherry on the ice cream sundae, darlin...but what IS the cherry without the ice cream sundae??  

You have some things in your favour in that you're a geno 2 and you achieved UND early.  So here's hoping that extra bit of magic that none of us can control is also on your side and that this is the one and only time that you ever have to go through this extra-brutal-for-you treatment.

(What is your hgb at these days, btw?  I read up trying to find it and couldn't.  Where's the procrit discussion at with your doc and how do you feel about all that?)

Take good care of yourself....keep advocating for yourself...keep seeing those docs, keep asking those questions, keep researching....and do what is good for you.

And PLEASE....don't wait too long to contact the doc if things take a downturn.  Please take good care of YOU.  

I'm SO rooting for you, Mikmo.

Hugs to you...um... VERY gentle ones.  :)

Trish

[Wassup]

Trish, Darlin', I couldn't have said it better.  So, Mikkimo, Ditto, dontchano!  Love n hugs, Bv

[Mikkimoe]

Hi gals,

Just back from Dr. #3 this week and it seems it's just the autoimmune kicking my butt so bad. Lot's of low's on my labs but the hgl is still at 12. I have autoimune and iron anemia and basically just a high intolerance to the meds due to the Enbrel. But Both the Hepta and the Rhumey say no Procrit - it would make it worse at this point and I'm already taking 3 injections a week as it is...The enbrel seems to be having worse reactions then the Peg these days....so I just have to get get use to the fact that I will be bed ridden pretty much the rest of tx.   But ya know - that's OK - I look at it like having a hard pregnancy....if it's a bouncing healthy baby at the end - who cares right.

How are you all doing?

{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}

Mikkimoe