Early rescue drugs- or not?

[way]

Hello everyone!

I take my 4th shot today... SO FAR SO GOOD!!!NO SX!!!(a little fatigue and a bit of insomnia)

I had a blood test Monday and I'm on my way to the Doctor armed with copies of the studies that you guys provided me to try to get Dr. to order a 4 wk pcr which Ins. will not cover, but I will pay cash for .

I have been reading this forum faithfully and I have one question. Should I try to get Procrit early even if I have no symptoms? My paranoia is the sx. big time. Right now I have none. From what I've read procrit causes alot of pain. Does it do this with everyone??? If not in any discomfort why cause it by adding a new drug?

[bobbyullc]

you may never need procrit and as it $400 - $1,000 a shot it does not make sense. your ins. probably will not cover it as only a small percent need it and you have no symtoms.
i think a 4 week pcr is worth the 300-400$ it may cost. wish i had.
bobby

[can-do-man]

Procrit early? They won't give it till your hgb falls low enough. For some it falls early, i was at 25 weeks before i needed it. Some never need it. Best to you

[52TELE]

Highway (lol) , Your going to know when its time to start working on getting the Procrit .When the time comes , the window of time between the start of the anemia and the point that it starts kicking your butt isn't very long. You weekly CBC/labs  should be a good indicator as to how your HGB/RBC are reacting to the treatment. If you see a downward trend in the numbers without leveling off , its a good chance that its going to continue and its time to start working on getting the rescue drugs. A lot of times insurance companies wont start paying for the procrit until you HGB levels fall to 10 g/dl  , OR , if the drop is so fast that you are becoming disabled because of it.
Now is definatelt the time to start finding out your insurance companies policy and letting them know ahead of time that your HGB is dropping. That way when it is time , you will be ready.

I hope that helps...
Good luck

[NYgirl]

They will never give you Procrit if your hemoglobin is not low enough no matter if you have the worst side effects in the world...so I'd say that asking for it NOW would be a waste of time.

BUT it is important to talk to the doctor NOW about whether or not he will prescribe it when you need it and what his conditions are (ie: hgb under 10, etc).  Then you can start working on making sure the insurance will pay for it (it is $6,000 for a box of only ten ampules....which if you take 2x a week is only 5 weeks of Epogen really and most treatment is 48 weeks long so it's a LOT).

Good luck! I hope that the sides stay kind to you and you don't even need Epogen or Neupogen or anything!

[jmjm530]

Way: Should I try to get Procrit early even if I have no symptoms?
--------------------

If I had to re-treat all over again, I'd start Procrit prophylactively with my first riba pill. Of course, I'd have the benefit of hindsight. Your case is different in that you're asymptomatic at week 3, which I was not.

Still, it makes sense to monitor your hgb as frequently as your insurance or pocketbook will allow for the first 12 weeks or until your hgb stabalizes. That helps to narrow the gap between potentially "needing" Procrit and when the Procrit actually kicks in which is generally 2-4 weeks.

Also, don't assume there's a magic number that the insurance companies use. I got Procrit at hgb 11.4 and there was no problem with insurance. A lot depends on how your doctor approaches the situation. If your hgb drops more than two points in a matter of a few weeks, and your're symptomatic, you have a good case for Procrit. It's in the literature -- wish I could put my finger on it.

As far as pain is concerned, some report joint or bone pain, but I think that's a minority, not to say there aren't some sides. Personally I could never could entirely differentiate Procrit sides from those of the other treatment drugs, although I suspected it may have marginally raised my blood pressure.

Four-week PCR is always a good idea. Try and get as sensitive test as possible such as Quest's Heptimax which goes down to 10 IU/ml.

To expand on the insurance issue again -- do not assume anything about your insurance, including what your doctor or nurse tells you. I was told by my NP that she would have to "fight" for my 4-week PCR. This was not true. In fact, my insurance covered any and all PCRs as long as my doctor ordered one which was weekly at one point. Same with the Procrit -- again, no magic number, my doctor just had to request along with my stats and a diagnosis. Always check with the source -- your insurance company.

All the best luck.

-- Jim

[sfbaygirl]

I agree it would be best to get it set up in advance in case you get anemia. When you have it, it's hard to even make the call. You are smart to be thinking of it now though. It hit me like a mac truck and I didn't see it coming. I am really grateful I had a hemotologist in place before tx.

Jim; I didn't realize you got Procrit at 11 too. You are so right to check with ins. co about when they will allow it. So many here suffer needlessly with anemia for months. I wish we weren't all just a number.

[jmjm530]

A lot really depends on how hard your doctor wants to fight -- be it Procrit or your 4-week PCR. Some doctors -- whether it be personal philosophy, insurance incentives or laziness -- tend to follow the minimal protocols allowed. Others, will make greater efforts to work those protocols to their maxium, which often only requires one xtra call or form to convince the insurance company why this or that is necessary. This is not to say that all insurance companies will play ball, but like I said earlier my first NP was reluctant to even order a 4-week PCR, while my next doctor thought nothing about ordering weekly PCRs.

-- Jim

[can-do-man]

said.....If I had to re-treat all over again, I'd start Procrit prophylactively with my first riba pill. Of course, I'd have the benefit of hindsight................

My hgb was at 17.2 at start of tx. Theres no way my Doctor would have put me on procrit. Wouldn't there be risk concerns there?...Hope all is well

[MissMiss]

Brian Fog told me I was on the right thread but wasn't so am reposting this comment.

Rescue drugs--Yes, find out who will do the prescribing. If it is another doctor, find out how long it will take to get an appointment. Find out if your doctor will choose a reduction of meds first. I had my meds reduced for about a month waiting to get into a Hematologist after asking for several weeks before the reduction about rescue drugs. You sure don't want that to happen.

There is a lot to learn about this craparama but this is a great place to start. Onward and upward!

miss

[jmjm530]

The risk in your case (or potentially anyone's) would be if your hgb decreased from the ribavirin slower than it increased from the Procrit, thereby raising your hgb beyond pre-tx baseline and theoretically putting you at risk with too high hgb.  But like I said, I was giving myself the benefit of hindsight, and I know how my hgb reacts to both riba and Procrit -- that's why frequent monitoring of hgb is so important early-on in tx until hgb stabalizes, so you don't get behind (or ahead) of the hgb curve.

Miss, Wednesday (or was it Tuesday) I reached for wallet to pay my lunch check only to find that Brian Fog had pick-pocketed me early-on in the day. At least he was kind enough to put the wallet back on my bed, cause that's where I found it when I returned home.
Strange fellow.

-- Jim

[friole]

missmiss has a point -- sometimes it is hard to get into a specialist (hemotologist) if the doctor himself does not monitor the bloodwork.  My doctor got me set up with a hemotologist at my first treatment meeting and she was there right along to monitor the blood drops.  

I guess you didn't have any success getting the ins co to pay for the 4 week PCR?  It must be the difference in the plans.  I think I have a BC/BS cadillac plan (at least I sure pay for it).  Sorry the ins co would not pay

[lilmoma]

You sound like me!! I asked my doc before I  started tx if he could just "have the procrit ready for me" LOL he kinda grinned at me and said he wouldnt let me hit the curb, but took a definate "well see your labs first attitude" I knew when "it was happening" man when your outta breath just walkin across the room, I would get real dizzy just from the slightest movements. Doc was fast to get me on procrit!!!!!!! It is slow moving stuff though, took weeks before I could get a handle on things.But the stuff works!!

[sfbaygirl]

If your abs Neuts go below 1.0, that is when they want me to get Neupogen. If my Hemoglobin is 11 or lower your want to call for procrit. It may take time to get into see the Hemo. These are the two lab tests my dr. says they look at for rescue drugs. So keep an eye on those 2 numbers. Your WBC is not bad at all. Mine was above that before tx and it is now at 1.3. It goes up with the Neupogen if you need it. Mine will most likely go up since I had Neulasta Saturday.

Perhaps you could get an appt. with a hemo before you need those drugs, just in case. I am so glad I had my hemo in place before I started tx. When I called him, he said come on in now. I didn't have to wait for that first appt. Sometimes those first appts. take more time to get. Perhaps tell your dr. you would like a consultation with the hemotologist first. At least you will be on their records.

[jmjm530]

Lil,
Your doctor seems to be following normal protocol. My only suggestion is that now you're off Procrit to keep following your hgb on a regular basis (every week or every two weeks) until it stabalizes. A reasonable time to follow this carefully is six weeks because sometimes it takes that long for changes. At some point in my treatment I cut back the Procrit from every 7 days to every 10 days because my hgb got close to 15. Before I knew it I was back to 11 and had to go back on Procrit. You never know how your body will react, we're all different.

Way,

No doctors or professional lab readers here :) but your labs look pretty darn good to me. Less than a 1 point drop in hemoglobin, platelets are outstanding, and absolute neuts at 1400. While it's true some doctors intervene at 750, some (including mine) don't intervene with the helper drug Neupogen until abs neuts drop to around 300. You've got a long way to go in that respect. Congratulations for getting the 4-week PCR and you were smart to ask for it the day before your 5th shot. Just make sure he runs a sensitive test like Heptimax that goes down to 10 IU/ml.

-- Jim

[Mister beagle bailey]

I understand your concren about getting procrit but the norm for getting procrit is a HGB  below 10.  But if I were you I would get it approved by the ins co first so it's ready to go if you do need it, as it takes weeks to work.

I was on procrit since week 2 of tx and I finished tx almost 3 weeks ago and still on procrit.  For me it took almost 5 weeks to kick in.  Glad your sxs are not bad.

Beagle

[way]

Whats the difference between procrit and neupogen? And are they used for different things...

[sfbaygirl]

Procrit is for Hgb (hemoglobin) usually below 11. Red blood cells
Neupogen or Neulasta are for ANC (abs Neutrifils count) when below 1.0. White blood cells

[jmjm530]

I was lucky the doc had some Procrit in the office when my hgb hit the floor, so no delay while waiting for insurance. At one point I thought I might need Neupogen (never did) but made sure they had some in the office in case I needed it. If not, I think I would have pushed them harder to get it pre-approved just in case.

[lilmoma]

I found your post interesting about the hgb numbers. My doc recently too me off procrit, said my hgb levels were abnormally high,...............14.2?
But I noticed where you posted that if hgb goes "higher" than your baseline pre-tx than that is a differrent issue. I am thinking, this must be what the doc is talking about. When I started tx, my hgb level was 12.6  then dropped down to 9.2 now after procrit, Im all the way up to 14.2,....which is pretty high when you do the comparison.

[way]

Just got back from the Doctor and he ordered a 4 week PCR!! He asked if I wanted it now, and I said no - I want it before my 5th shot! So I have an appt next Friday for the lab.

He said my w

[can-do-man]

says.........and she was there right along to monitor the blood drops..........

Man that has to be a boring job.... 1 blood drop, 2 blood drops, 3 blood drops. Whats after 3 blood drops?

[way]

continuing... my labs from Monday showed a wbc drop It is now 3.3. Is that really low? Before tx it was 6.0. My rbc is 3.91 and before tx it was 4.18. My hemoglobin is 12.6 starting from 13.5. The only other thing that are flagged are the monocytes--16. And neutrophils(absolute)-1.4 and before they were 2.9. Other than that it looks like my platelets are dropping a bit from 249 to 196- but everything else is about the same. He checked my THS also and it is not flagged (2.011)either.        

I asked him about the procrit and he said if my blood count drops he will refer to a hemotoligist. He didn't think there was a cut off point when the ins. would cover it--it just depends on the symptoms, age etc.

Thanks to everybody for your answers help and support.

[friole]

Well hip hip hooray, way.  Sooooo glad the doc ordered that 4-week test.  Can't wait for your post on the results -- what is the sensitivity?  My doc would normally order the <50 but since I ask special, he orders the more sensitive for me...

Can-do  -- Yep, watching blood drop must be some boring job.  My hemotologist was a lawyer before she decided to be a hemotologist -- so go figure that one!  Actually I think I pissed her off from day one because I didn't want to start on the Neup at .8 so I wrote her a letter and sent her a study.  Did end up starting a month later when it dropped to .4.  Anyway, I haven't seen her since ---- i see her nurse once a week but not the real doc. My lack of tack is renown....

[sfbaygirl]

That's a great idea to wait to get the neupogen until it's lower than .8. Mine has been, but the sx from the Neulasta are AWFUL, I could easily wait to .4. Now if only the dr. will go along with it...I will have to ask!

[friole]

I understand the Neulasta is really hard on the bones than the Neupogen. Why don't you just ask to change? You don't do your own shot? Sometimes I have pain, and sometimes I don't .  You said you could wait until it goes to .4 and it would be okay.  Problem is, we really can't feel the side effects of low ANC unless we do get an infection.  Most hemotologists are associated with oncology departments and cancer patients are really subject to infections when ANC drops below 1.0. My hemolologist had never treated hepatitis C -- I thought she would be receptive to the info I gave here, but since I haven't seen her since, not sure.  I don't know who is right here, so I just finally caved to the hemotologist.  I have germ-carrying grandkids over all the time and figured better safe than sorry.

I tried googling the research on ANC and hep C treatment but couldn't put my hands on it. Sorry.

[sfbaygirl]

I have germ carrying grandkids all over the place. I have one here now. Of course its' hard to tell them not to come over, so I got the shot at .6 last Sat. and I have had awful bone pain since. Hence the reasoning for not wanting it again too soon.

I don't give myself the shots, my hemo (who knows little about Hep c) wants me to come in to get the shots. I don't mind every few weeks. I asked him about switching due to the sx, but he said I would get the bone pain from neupogen and have to get them a lot more often.

I am going to Jamacia for two weeks. I don't want to have anemia or low neuts, so I am going to have to deal with the long lasting Neulasta and Aranesp for another month. Then perhaps I will switch to Neupogen when I return. I don't have sx that I know of from the Aranesp or procrit.

[sfbaygirl]

I am sure ready to try it, but I figure I need a 2 week dose for Jamacia, then I can change.

Yep, Jamacia is not going to be the same. No partying, sleeping much more. I was thinking that if I am feeling good, doing more exercise, walking, snorkeling, stuff like that.

I know John will be disapointed, but there is nothing I can do to change the fact that I am on tx. He is supportive, just doesn't get the no libido and running around all the time. I am not sure why he signed us up for 2 weeks, we usually only go for a week!

[friole]

I do think walking helps to ease the bone pain.  I really don't get it that much.  I think he is wrong and that Neupogen is not as hard on you as Neulasta.  

Have fun in Jamacia but take it easy.  It will be different this year for you.
frijole