Dr. Now Wants to Put me on Two New Meds, Think Procrit May be One

[LindaC1207]

My doctor called and left a message on my machine last night saying that my blood tests came back and she wants to talk to me about them.  She said she wants to put me on two new types of medication, which baffels me.  I can see one, probably Procrit (which I'm not sure I'm going to take after reading up on it) but what would the other one be?

I called her office this morning but she's at the hospital today and will call me when she checks in and gets my message.  Plus her assistant told me that she's already sent in the authorizations to my insurance company.  I'm not sure I'm even going to take it yet.  I know I'm anemic, I'm feeling more and more tired all the time, I can sleep on a pencil I'm that fatigued and mornings are a real bummer.  I hit the snooze button and before I hit the pillow, I'm out like a light!

Can some of you who are taking procrit now tell me how it's making you feel?  Does it really help with the fatigue?  First off, I'm taking more than enough drugs, I have high blood pressure also and really don't want to chance making it any worse.  I also don't want to have to truck into the hospital every week for blood work, every two weeks is more than enough.  Another thing that concerns me is the side effects and if I'll still be able to work.  I've been doing pretty good so far and I'm past the half way mark of 48 weeks.

I'd love to hear from anyone taking procrit or any other drug used to boost the red blood cells and protect the bone marrow.

Many thanks!
~Linda

[JennyPenny]

Hi Linda, I sure do understand how you feel. I took Procrit and it really helped me feel alive again. My hemoglobin dropped down to 8.0 and with the Procrite I got back up to over 11. There were no side effects at all.

I am wondering if the other drug is neupogen, which is for a low white count (actually a low absolute neutrophil count). That drug is a bit harder to deal with because it can cause some bone pain and headaches. Although once you are used to it, that tends to lessen or even go away. I only had the bone pain with the first neupogen injection. After that I was fine.

Both drugs can help you stay on treatment without lowering your dose of interferon and/or ribavirin which could ultimately cause you not to respond. So please give it some thought before you say no to the rescue drugs. BTW, I have high blood pressure also and neither drug hurt my bp.

Good luck to you.

[LindaC1207]

Thank you for your response, it's was very helpful.  I probably wouldn't say no to Procrit but the Neupogen has me a bit scared, due to the fact that I already have joint pain.  I've also been suffering with Sciatica for about 3-4 years now and lately it's been pretty painful.  I don't think I've ever heard of going on both of these drugs at the same time, I usually read that someone is on one or the other.

Damn, I managed to make it all this way without needing these drugs; I'll be doing shot number 27 tomorrow night.  I found that the first 6 months was a breeze and then once I hit the half way mark, I started getting a lot of fatigue, hair is thinking, kankers in my mouth, joint pain, etc.  Nothing that I really can't handle but I was hoping that the entire 48 weeks would be good.  Oh well, can't win them all!

Just spoke with Doctor and she does want me to take both, my Hemoglobin is at 9.5 and not sure about my white blood count.

Linda

~Linda

[jmjm530]

Hi Linda,

Not to say that's what is happening with you, but from my experience here Neupogen is over-prescribed on treatment and usually that happens if you are treating with a gastroenterologist as opposed to a liver specialist (hepatologist).

While guidelines vary, unless your Absolute Neutrofils (ANC) is less than "500", most hepatologists I'm aware of will not prescribe Neupogen.  You should also keep in mind that ANC can bounce around a lot. For example, one week my ANC was 300 and two weeks later it was over 1000. My medical team didn't prescribe Neupogen because they predicted my ANC would recover and it did.

Here's an article you might want to share with your doctor regarding ANC and infections on the kind of HCV treatment you're on.

The conclusion reads:

"n conclusion, neutropenia is frequent during treatment of hepatitis C with interferon and ribavirin, but it is not commonly associated with infections. These results suggest that patients with constitutional neutropenia probably can be treated safely and may not require dose modification. These findings support a revision of current criteria for exclusion and dose modification based on white blood cell counts in the treatment of hepatitis C. These modifications would expand the proportion of patients who could receive interferon-based therapy for hepatitis C. Because this was a descriptive study of limited sample size, it did not allow for identification of a specific cutoff value for neutrophils that can be considered safe. However, in the absence of other risk factors for bacterial infection, neutrophil counts of as low as 500 cells/µL are likely to be safely tolerated during interferon therapy. These criteria need to be validated in larger, prospective clinical trials."


http://www.hcvadvocate.org/hepatitis/hepC/Neutropenia.html

[merryBe]

the procrit seems to bother very few in here, except for the shot itself. I've started to feel a little more leg cramps the last couple weeks, but this after a YEAR on the stuff.

the literature is a little scary....but you can't go by what one is a million have happen.
If your HGH is a 9.5 you should be fatigued and get breatless easily.

I started out at 15...and got down to 10.5 when they put me on it.
What that meant was that my bloods ability to carry oxygen to the cells had been reduced by 1/3.  1/3 the oxygen can lead to faiting spells or even dizziness while driving.

the procrit will boost your red cell production. As long as you have enough free transferrin for it to work. get this iron level checked and make sure you keep it in a range that your docotr approves of. Once you have the number you'll know whether you will need to eat more iron rich foods to make the procrit work. You DO NOT want to increase your dietary iron unless it is neccessary as too much is toxic to the liver.

the Neupo has more sides than the procrit, and for this reason many docs wait until neutrophils are at .5 to start that....I got down to .9 once, but they didn't put me on it.
the upside to that is you don't get the sides like bone pain....not everyone gets that but some do....the down side is you are more susceptipble to infections.
I have had about 10 minor infections (minor only because antibiotics cleared them up) this year. However, if you have weak lungs or respiratory stuff, the doc may want you on it sooner than at the low .5  because pneumonia can be a real concern for smokers or lung patients. If you don't have lung issues you may be ok without it.
I did get several infections, one in a tooth and then jaw (keep up on dental cleanings, and one kidney, 5 bladder and two ear infections. So without stimulation the white cells at a certain point you can expect things to go awry.
I had not had any similar infections in the 30 years prior so this was definitely weaknesses brought on by the chemo.

shot your procrit warmed up...and in the fattiest part of your body, and slowly press the syringe in...too fast or cold and it will burn.

mb

[nygirl7]

Procrit just ROCKS.  I never had any problem with it (except that it stings a bit when you inject it and I claim to be the world's BIGGEST baby) and I took it for 69 weeks - mostly 2x a week.  All it did was make treatment tolerable again.

My doc had me wait on my whites too and they went back up. Then they went down but then they went back up.

I was glad because who really wants an extra shot even if you don't have any problem with bone pain!  ;)

[MYS]

Hi LindaC1207 -

I took both Neupogen and Procrit while on treatment.  

Regarding Neupogen - I didn't feel any additional side effects from it, I had been suffering from joint pain from about day 3 of treatment until about 9 months after I finished, so I doubt I would have noticed.  Even with the Neupogen, I still came down with pneumonia - probably bacterial - on treatment, also an ear infection and ended up with a permanent partial hearing loss.  I shudder to think what I would have gotten if I hadn't been on Neupogen.  

If you're not going to take this, you're going to have to avoid all germy people - especially children, they are little germ factories, IMHO ;-] , wash your hands constantly and remember that the hot water knob on public sinks and the doors of public restrooms are the 2 germiest places in the world - one due to the people who DO wash their hands, the other due to the people who don't.

Regarding the Procrit - I know that the FDA has now put a 'black box' warning on this, which wasn't on it when I took it.  The trick is to use it to get your hemoglobin up close to 12, but not over it.  I had a friend whose Hgb went down too far when he was on treatment and he had a heart attack, so I would choose Procrit over a riba dose reduction - the other option for stopping your Hgb from dropping too low- any day of the week.

I had to have a big month long fight with my insurance company over the Procrit, during which time I couldn't work and they saved themselves $2,000, but my company paid my salary because I used some sick leave - so I don't understand why they felt they had to fight my doctor about this.  

If you can get Procrit without a big insurance battle and use it to keep your Hgb around 12, I'd say go for it.

All the best to you.  

MYS

[virgocharm]

i am on procrit. was put on when my hemo was 10.9 it is 11.7 now. it helped my wbc go back up. like someone said , before i started taking procrit, its a miracle drug from God. when i took my first shot, the next day i was back to normal. i went to cleaninfg, hanging out at the stores, doing everything. it will not effect your other issues at all. i was severely fatigued, not anymore. i can breath and run. i feel good.i was taking 20,000 cc. once a week.  that was a month ago.

[JennyPenny]

I have had incredible joiknt pain for the last 10 years. The pain from the neupogen, if you do have to take iot, is not like the joint pain. It is deep bone pain. There is some speculation that the neupogen, while causing the immature white cells to grow, causes an inflammation inside the bones where the marrow is and that causes the pain.

Jim's article is what my hematologists have said. The neutropenia is not a problem until it gets below .3 (300 cells). Strangely people who develop neutropenia from interferon do not seem to be at a hgiher risk of infection than do people not on  treatment. That is until the neutropenia gets very close to 0. My hepatologist says that 50 good neutrophils are all someone really needs to fight infection if they are used to living on the low side.)

You might want to ask your doctor if he/she can prescribe aranesp and neulasta instead of procrit and neupogen. They are both long-acting and the injections are only oncde every few weeks. I do think they are more expensive so your insurance might give you trouble, but it's worth a try.

[LindaC1207]

Thank you everyone for your responses, the Procrit sounds great, hopefully my insurance company won't give me any problems.  I get so winded and out of breath just from talking sometimes.  I avoid stairs, even one short flight leaves me so breathless that it takes me a good 5 minutes to get it back again.  So if the Procrit helps that, I'll be very happy.

As far at the Neupogen goes, like I said, I really don't want to take it but when I asked my doctor about this, she said that if I don't, she'll have to stop my treatment.  My wbc goes up and down so much that my doctor has talked about cutting my ribaviran every couple of weeks, it will be low at one draw and then at the next, it's okay again.  I'm hoping that it will go back up again.

I'm not sure what the numbers are, she ran them off to me so quickly that I didn't get it all.  My hemoglobin is at 9.5, she said my hematocrit was 28 but I'm not sure what that means.  Unfortuneatly, I can't tell her what I want to take and what I don't because she's in control.  The one good thing is that I'm past the half way mark and hopefully the next 20 weeks will go by quickly.

Wishing a round of easy sides for everyone who is doing their shot tonight!

~Linda

[JennyPenny]

Cutting your ribavirin will not help your wbc very much if at all. It is the interferon that does a number on the white count.

[jmjm530]

Jenny's correct and unless you're not communicating this correctly, your doctor is mistaken.  Have you thought about going for a second opinion? Best person would be a hepatologist (liver specialist) who can be found at your larger, teaching hospitals.

-- Jim

[LindaC1207]

"Cutting your ribavirin will not help your wbc very much if at all. It is the interferon that does a number on the white count."

That was my mistake, my doctor did say Interferon, not Ribaviran, sorry about that, but I hope most of you knew what I meant. That would have been a huge mistake on my doctor's part and she is quite good, of everyone she has treated to date, they have achieved SVR 6 months after they ended treatment and I'm okay with those odds.  I like her too, she's funny with a great sense of humor and to me, that's important.  

I was first being treated by a Hepatologist a couple of years back who had the bed side manner of a toad, she was abrupt, sarcastic, and when I would ask her to explain something to me, she wouldn't, said I didn't need to know and I'm the type of personal who wants as much information as possible, so I dropped her.  

I don't care how much experience a doctor might have, if I cannot communicate with them, then is doesn't matter.  

Thanks again!
Linda