Why does the Procrit make me feel so bad?

[GreatBird]

Last Wednesday night I took my fifth (??) shot of Procrit because the trial nurse called and my hemoglobin was down again. I hadn't had to take any for a whole month.

My peg-intron shot night is Tuesday and I was feeling particularly good on Wednesday--even went out to lunch and a good walk on the beach, so I know I was not reacting (at least much) to the interferon.

Then, Thursday thru Sunday (and so far today) I've been in bed. Started with achiness all over, off-and-on pain in shin bones, chills, and a profound sense of discomfort--physical and emotional, like things just weren't right. Nausea, lots of gas in stomach. I felt very much like I was coming down with the flu. BTW--the interferon has not been giving me mood issues, but for some strange reason the Procrit does?? What's up with that?

Does anyone else have this problem? Do you think taking smaller amounts more often would make me feel any better? My dose was 40. I know they also do 20's.

[portann]

Hi Enigma!!

GB, hope you don't mind if I sidetrack your thread a bit. It's just that Enigma was the second person I met on the forum and she was fantastic to me. Thank you always.

Enigma, where have you been? Living your life, no doubt. My garden beds are bursting with activity and I'm going to do my scaevola with seeds this year. Wish me luck.

Now back to the Procrit...

[Xenigma]

My first Procrit shot was the worst!  My whole  body ached and my head felt like it was gonna explode!  Not to mention the shot itself isn't that pleasant.  It does the job though.
The other thing is I experienced a double hit from my Peg.  Shot night (Thurs) I got very slight sx's but 2-3 days later (Sat-Sun) I got hit hard from the Peg. Then Monday was Procrit.  I guess we kinda get used to it but a month between Procrit is a long time.
Feel better....
enigma

[GreatBird]

mike--thanks for weighing in. Thank goodness my bone pain isn't that bad, and it's just the shins.

jmjm--I have all the numbers and made a spreadsheet. I think it confirms what I already knew that (at least at this point) I need about 40/every 4 weeks. You see, I did need more when I started at the end of January. I'm not sure how to account for the change except that I'm eating more protein (incl. red meat) and I went UND at about the same time that the hgb did some stabilizing (although how that would affect it, I have no idea). I'm thinking that having 2 shots a month @20/ea. might allow for more constant red-cell production which might help me feel better? Or else I'd feel crummy longer (hope not!). The tiredness doesn't really bother me. For one thing, they aren't letting me get that low. I take the shot when I get down to 10.2 or so, continue to drop (I assume) and then it kicks in.

[jmjm530]

I was warned about bone pain on Procrit but never experienced it. The rest of your symptons could or could not be Procrit related. Never heard of anyone going on and off Procrit the way your nurse seems to be prescribing it. If you need it, you generally should stay on it or your hgb will tank again and you will have to go back on. What you should do if not already is to get copies of all your blood tests and plot hemoglobin values (by date) against your Procrit injections (by date). Factor in the fact that Procrit takes 2-4 week to kick in (and 2-4 weeks to kick out) and you will probably see some sort of pattern that might be useful in working with your medical team.

[mikesimon]

I had horrific pain from Procrit. It was located in my shins, ankles and feet. I couldn't walk 100 feet without stopping and elevating my legs. I know for certain that my pain was caused by Procrit but from my research it is not a common side effect. Unfortunately I found of nothing that helped.
Mike

[GreatBird]

rogieman--good to know I'm not the only one, although I wish neither of us were affected by this.

virgocharm--I did connect with the trial nurse and she's looking into getting the 20's for me to see if it helps. My guess is that I'd be 20 every 2 like you. That would keep me from peaking and crashing, too, which would be a bit easier to deal with. And hopefully I won't get as sick from the 20's--or maybe not at all!

[virgocharm]

i am on procrit. 20 a week. i am also in the bocep trial. my trial nurse and doctor does not want me to go over 12 hemo. so i take my every 2 weeks as needed. i dont  have the sx you say you have. you could be taking to much. talk to your nurse and see where they want you to climb to.i get an instant boost when i take mine.

[rogieman]

I too have to take the procrit and it always makes me feel sick the next day. I do my interferon on fridays and the procrit on tuesday nights. the interferon makes me sick all weekend and always sick on weds from procrit. I do procrit for a month and lay off it for a month. seems to keep my hgb level that way. I hate taking it but have no better choice.

[GreatBird]

I really don't think it's the interferon. I felt great on Wednesday. Took the shot Wednesday night and felt full of yuck on Thursday. Wonder if it could possibly be some agent in the Procrit that is doing this. Each shot has been a bit worse than the last. I took one a week for three weeks, then one a couple weeks later and now one a month later, so that also helps to differentiate from the interferon because the sx went with the Procrit and not the usual Tuesday night peg shot.

Ah well. Thanks for chiming in here. I hope you do much better with the Procrit than me. I think I must be an anomaly.

[IMstacie]

I just started Procrit so I can say much at this point (1st shot).  But, do you think it may be some of the regular sx of the interferon because you hb is so low?  I know I'm feeling worse than usual and it's too soon for the Procrit sxs.

[GreatBird]

Thanks for the good words. Sometimes I wonder if the problem with the Procrit is because my body is just as stubborn as my mind and it doesn't like to be forced to manufacture red blood cells . . .  

[Marcia2202]

I was in bed all the way through tx, most of the time totally debilitated. My hgb always hovering just above 'procrit time'... I would mostly feel a small boost of energy after doing my shot, but mostly short lived. I would also say that it is the meds and not the procrit, but who knows....

I really hope that you will feel better soon. Personally I only started feeling better after stopping tx, but I started feeling better fast and am getting more energy every day.

All the best!!!!!

[GreatBird]

LOL! I *had* to climb the hill to get back to the car else my darling DH would have had to carry me--which would not have been good. Going down was easy.

I am no hero. I have spent so much time in bed it's beginning to feel more like a prison than a refuge, and I am not working. I got laid off last July which was what persuaded me that this would be a good time to treat. I was lucky to get a call about the trial about four months later.

I guess it's just how I react to the Procrit. Hopefully I'll only have to take it once a month, which seems to be where I am now. I haven't been consistent with the hgb, but then again it is the two drugs that are messing with the rbc and not just one.  

[nygirl7]

Sorry GB God knows you don't need to feel extra worse on treatment than regular worse.  I just hope it's something temporary you will get used to because you totally don't want to dose reduce, especially not this close to the beginning.

On another note: you are some kind of hero being able to walk up a steep hill at ALL on treatment...you know it's ok to be like a lazy bum like I was for my 72 - all I did was get up and go to work then collapse on my bed till morning again...I know it's not exciting but I was able to make it through which I guess was the important thing (even though two years later I am tryinhg to rebuild ANY kind of muscles onto my body and let me tell you there was NOTHING left...maybe I should have suffered a bit more and tried for a hill after all but all I did was lift the remote control and the ice cream spoon - that didn't count!)

[GreatBird]

Tippyclub--good luck on your shot! Let's hope this one doesn't pack a wallop. I did notice that I started to feel better when I boosted the protein in my diet. It just seemed to me that since protein is the stuff the cells use to rebuild, that I should make sure they get as much as they need since the inf/riba did feel like it was breaking me down.

jdwithhcv--I'm sure it will boost the hgb. It did before--in fact I think it surprised the nurse how quickly I went back up.

justme53--It could be that you would go better with a different anit-D. I dunno. I havne't really had any mood swings (surprisingly since in my pre-tx life I can get really cranky). My worst so far is a couple of good cries--but I'm a crier anyway.

nygirl7--My hemo didn't drop enough between Weds and Thurs to explain the difference in how I felt. In fact, on Weds I felt great. I climbed a steep hill at the beach, even. Yes, I was a bit breathless, but not badly so. Generally, when I'm being anemic my extremities get very cold and I do the breathless thing, but it doesn't make me fluish. I've had borderline anemia all my life (usu around 13.0--it runs in my family) so getting down to the low 10's isn't the same for me as it is for someone who is usually around 16. I have also felt the results of the boost Procrit gives me (my first three shots brought me up to 12.7), and it is *very* helpful.

I guess I just have to gut it out since a dose reduction would be a bad thing . . . It's both the riba and the boceprevir that creates the anemia which is a bit of a double-whammy.

[nygirl7]

I took extremely high doses of Procrit for 69 weeks and never really had any side effect - of course we are all very different, but I'm wondering if it could be just a total combo of treatment issues (and the low hemoglobin) that are causing you to feel so "yuck".

Procrit is just critical sometimes to keeping that hemo up and if you are not getting enough you WILL feel VERY yuck because you don't have enough red blood cells doing their job. While I had a drastic problem with the anemia I can tell you it was the ONE time during treatment that I just didn't think I was going to be able to do it (that was BEFORE the Procrit started to work - you know it takes from Two to Six weeks.....it isn't an instant acting shot it has a HUGE job to do inside your bone marrow)

Perhaps you just haven't gotten to the point where it is doing anything and your hemo is getting lower and lower and that is what is making you feel so bad?

[justme53]

That's my thought too about the anti-D's. I think it was just one too many meds for me....the nausea, dry (er) moutn, supreme headache and URQ pain to boot. I WAS having some severe mood swings, etc. a couple weeks back that let up when I dropped the Peg dose, but now that it's upped again I wanted to be prepared, but I also like being able to make it to work too........

[jdwithhcv]

Sorry to hear the procrit is making you feel bad.  I had some bone pain with it, but not much else happened that I could blame on the procrit for sure.  I took it for 40 weeks so maybe I just got used to it.  Anyhow, I hope it raises your hgb.  I know I could not have done 48 weeks without it.

jd

[Tippyclubb]

I am not on Procit and I do Pegasys but I had all the sx you described last week, except the gas.  I was so cold down to the bone, and legs cramps that switch to overall body cramps on Thursday.  By Thursday evening I was lying in bed shaking with a fever, then chills.  Felt like the flu and it was awful.  By Saturday I felt a little better but developed severe eye pain.  

Possibly it is the shot and not the procit?  I am taking my shot in 15 minutes and I am praying I don't have a week like last week. I was not prepeared for what happen last week , but I am today.  Bring it on!

[GreatBird]

Several months back someone posted a thread about when the shots were hitting everyone (it's in the archives somewhere) and I noticed that Pegasys took a couple of days and Peg-intron was pretty much right then--which has been my experience.

You know, way back in the beginning they gave me Lexapro, which I wanted to take so that I didn't drive my poor DH crazy through this process. I took it once and was in the bathroom that night feeling really sick. I decided I was probably hitting myself with too many meds all at once and that I should wait. Turns out, I haven't had emotional issues on tx--so far (except with the Procrit). So, I never started it.

[GreatBird]

Yes, I noticed that about the water and the peg too. No dry eyes but very thirsty. Interesting.

I suppose you could describe how I've been feeling as "yuck" (but that takes all the drama out of it ). I'd say it's more VERY yuck. My first few shots I reacted for two days and then it went up to five, which is where I am now.

[justme53]

I'm the opposite of you, first couple months a piece of cake, now two days later post shot, WHAM! I 'm doing Pegasys. Oddly enough, last week I took a Celexa for the first time and was sick for three days, so blamed the Celexa and haven't taken it again. It gets to the point, I don't know which drug to blame for which SX ...

[skersj]

Although Procrit is a great necessity for some of us, I guess it is different for every one. I too had a generally yuck feeling after Procrit. Felt all shakey all over, thighs ached, immediate bad taste in my mouth and did not feel like doing anything for 2 days. It did work well though for upping the Hgb. After a couple of days I felt fine. I haven't had it for 3 weeks. I have no problem with the Peg. I take it and go out and exercise. I do have to drink about 32 oz more of water day of Peg shot and day after though. I get real thirsty and dry eyes.

[GreatBird]

Thanks, Pam.

When I was reacting to the shot (which I did for the first 12 weeks without fail), I got nailed on the following two days. I think peg-intron hits faster than pegasys. Which one are you taking?

I had actually been feeling so much better since week 12 (just did shot #17).

My first Procrit shots were on Thursdays and Fridays and they have followed this pattern, except--as I said--I seem to be feeling a bit worse with each one.