Procrit SX?

I have to admit - I'm a little confused by the protocol/etiquette? on this board.  I hate to start threads but didn't want to jump in on GrandOak's just now either.  So, please bear with me if I'm doing it incorrectly.  Jim, I really appreciated your thread (s) the other day about Procrit.  Now, my question has to do with sides.  I'm getting ready to Google it but wanted to get your experiences as well.  Also wanted to say thank you to everyone who responds to all my numerous questions.  I do post and say thanks but this board moves so fast that I'm not sure anyone gets my responses especially if they're a day or two later.

Generally does anyone have any thoughts on side effects of Procrit?  We're really pushing for it for my hubby (hemoglobin 10.5) He only has 12 weeks left but I feel that if his levels go any longer, he'll be completely out of commission or have to reduce levels as GrandOak did or go in the ER as Jim did.  Do want to be prepared for the worst and/or best with this medicine, as the case may be.

Thank you, Char

[Morgaina]

There always has to be one of us. We use a med called eprex rather than procrit and I had a hard time with it. My hemo stayed at 11.4 which wqas great but some days I couldn't even keep water down and my pain level rose at least 100%. Had a hard time getting covers off in the morning without yelling. My doc said to go without for a week and hemo was down to7.3 within about 3 or4 days. So I had a transfusion etc. and my doc pulled me off meds 2wks. early. Get results from 4 wks pst tx tommorrow. Seems these bad sides are not common so your hubby will probably only benefit! Lots of luck!!

[cuteus]

I don't recall any in the 13 months I took it.

[jmjm530]

Since I started Procrit at week 2 of treatment, it was very difficult for me to differntiate the sides from Procrit from the sides from peg and riba and all the other problems/infections I was having. At one point I stopped taking Procrit for a few weeks and can't say I felt significantly better. Think it may have raised my bp a little but again not sure. I do get the sense here however that the sides of Procrit are minimal compared to Neupogen for example but I've never taken Neupogen so just an impression. What you have weigh with any drug are whether potential sides outweigh potential benefits, which in your husband's case is raising his hgb. Sorry I couldn't be of any more help.

[52TELE]

Procrit has definitely been the easiest part and the most helpful aspect of my treatment.
No sides that I can attribute to Procrit. Just the way I like it.

[Mister beagle bailey]

I was on procrit from week 2 of tx until 3 weeks post tx.  The sx I had from procrit was bone pain, mainly in the legs and feet.  Dealing with the pain was better then dealing with the anemia and it's breathing roblems.
However, not every one have sxs from procrit.  Hope this helps.

Beagle

[MissMiss]

I have similiar sx's as Beagle.  Bone pain.  I think maybe that taking Neupogen with it makes it worse but Neup gives more bone pain, my opinion only.  I also take a lot, 120, right now.  Previously on 80 since last December.  

Like Beagle says, it's better than the anemia.  

miss

[sfbaygirl]

How are you doing? Last I read, you were having a really hard time. You were going for a transfusion? Hope you are getting better!

The procrit (aranesp) I took for anemia only seemed to help. Sx (bone pain) didn't seem to hit me until I took the neulasta. I recently bit the bullet and took steriods for 4 days to relieve the bone pain on vacation. It worked wonders! I am not sure how much the steriods will effect tx, but my hemo/ong says the QOL is VERY important and I believe it. Hopefully, tomorrow when I get my next Neulasta the steriods will still be working.

[GrandOak]

My experience has been more nausea and light headedness the morning after my Procrit than I experience from the Pegasys.  It seems to wear off by mid-day.  It's not bad enough to prevent me from driving to work and toughing it out there, although I do try to avoid mid-rush hour traffic so as not to push it.

[jmjm530]

Briefly, I have rosacea, sebopsoriasis and maybe something called  Poikiloderma.

The laser would be primarily for the rosacea and possibly the poikiloderma -- both for the erythema (redness)as well as the papules and pustules which is fancy talk for pimples. Besides the short-term cosmetic effect, the idea is to diminish the underlying blood vessels so future flares would be less frequent. Also, although not common, untreated rosacea can become disfiguring, especially with men, and treatments help prevent this. Right now I'm on topicals and am considering oral doxycycline.

When I say "laser", I'm referring to IPL (intense pulse light) which technically isn't a laser. My research tells me it's the way to go as opposed to the older Pulse Dye Lasers, but maybe just a marketing thing. The IPL used by the doctor I'm considering treating with is made by Aurora. Yes, he wants me to sign up for six treatments ($750 per) at buy five and get the sixth for free -- no kidding LOL) -- but the catch is you have to pay for all in advance with no refunds, only a credit -- so like what do I do with the credit -- get a nose job. LOL. And then their are maintance treatments every 4-6 months. I probably should have been a derm with this racket.

Any and all information from your files is appreciated. BTW what skin conditions did you have to get you interested in lasers?

[prettydamscared]

I'm pleasantly surprised to hear your responses.  It sounds, preliminariy anyway, easier than the Peg or reba.  That'll work for me.

Jim, can I ask what kinds of skin problems you are experiencing.  FWIW, I've had 1 treatment with IPL laser (intense pulsed light laser) and 1 or 2 with the other one that you mentioned today or yesterday.  Name is escaping me but it's the one that's considered the gold standard.  They work in limited ways in my experience and only for very specific ailments. I find, and I think this is considered universal among people that have used them widely, that you have to have realistic expectations.  And, imho, docs want you to sign up for 5 and 6 treatments when many times, that's not necessary.  I spent a lot of time researching countless lasers a few years back.  They, of course, fall into the general realm of cosmetic procedures (even though I'm fairly sure that's not your objective) and with that comes almost a mindset that maybe they'll work and maybe they won't and doctors seem to get away with that.  But anyway, it's late and I'm babbling.  If I knew what your problems were, I could pull out my old info, which is still current and get you some relevant links.  I will say when it comes to lasers, the FDA has approved some doozies, i.e. N-lite.  Absolutely useless.  Many of them are approved for procedures which they do not seem to do much, if anything, for.  Smoothbeam for acne scars, for instance and I could go on an on. Let me know if you want some info.  Bobbyulc did post today that one did wonders for him so if you find the right laser for the right problem and take what the doctor or technician says with a major grain of salt, you may do well.  Do your legwork though and I don't mean through the doctors sites.  There are a lot of forums for "cosmetic procedures" similiar to ours here, where you can hear from real patients. Lasers are expensive....need I say more.

Thanks, Char

[FlGuy]

Not bummed out by the relapse. Someone's got to make up the 17% for the rest of the 3a's in the world.  I was und at tx end (but really not clear i guess). The relapse pcr was a surprise and sometimes I pretend it was a false positive sort of like when I pretend that I'm young again. I'd rather not have hcv, but I feel great right now and I'm not about to jump off any bridges.

[NYgirl]

Said: Generally does anyone have any thoughts on side effects of Procrit?

Yes I have DEFINITE thoughts.  The side effect of Procrit (Epogen) to me was DRASTIC!!!!!!!!!!!

It enabled me to be able to complete treatment!  I have a horrible time with my anemia dropping out of nowhere extremely low.  It's happened at different periods during tx.  Without the Epogen I would have NOT been able to continue and best case scenario it kept me from reducing my meds

I was so overcome by the severity of the anemia ... that when the Procrit started to kick in I could simply not BELIEVE how great it was.

It is truly a MIRACLE DRUG and if your hubby is feeling bad being in the 10s...go for it.  I have had ZERO real sides from it at all.  It SAVED treatment for me - no doubt in my mind.

Debby

[mikesimon]

I experienced extreme bone pain when my Eopen dose was at 40,000 units 2x per week. It was excruciating but I think it is an uncommon side effect. Mike

[MissMiss]

Good morning, my friend.  Thanks for asking.

I won't do a transfusion for many reasons.  After my hgb dropped from 9 to 7.4 in a week, my Procrit was raised from 80 to 120.  HGB went up to 7.7 and I get the vampire stick today to see where it is this week.  Also going to finally do a RF test to determine the kind of cryo I have.  Most of my time is now in bed or laying down.  My legs just won't hold me long. I don't remember ever feeling quite this bad.  I did reduce my Riba to 800 last Sunday on my own.

There is no doctor who will let me extend in my neck of the woods so I guess a week from tomorrow I will finish my last Peg.  The way I feel now it is probably for the best.  If I relapse, I'll have to deal with it but so far und since week 24.  It's the positive cryo that has me concerned since the only reason they are there is because of the virus.  

Miracles do happen and I am hoping it happens for me (and a few others).  Strator stopped two weeks early too because the sx's were too hard.   Sometimes ya just gotta do what ya gotta do.

I hope you and hubby get rid of that bug that caught a ride home.  Best of luck with your Neulasta.  He must not be too concerned about 18 hours instead of 24.  Too bad you can't do it yourself so you can time it.  Have a great day!

miss

[prettydamscared]

Yep you hit the nail on the head.  He's slogging out the last 12 and I'm starting Monday a.m. bright and early. So, you think if he dips into my vertex, they'd believe the dog ate it?????

Jim, where are you located?  West coast, right? I used IPL for  rosacea and telegantitis (little tiny broken veins and capillaries that contribute to the redness) and pulsed dye for..I don't remember now, just general vanity, I guess. lol  You're right it can get much worse in men.  I will pull my old files and depending on where you are, perhaps even be able to give you a name.  I'm very leery of a doctor charging in advance for that many treatments.  None of the doctors that I saw for laser treatments did that and, imo, that's unusual, unless things have really changed in the past few years.  I actually used to follow those boards like we follow this one.  I don't remember all that info off the top of my head, but I will follow up.  Some of the posters on those boards were as knowledgeable as you are on this one, incredible as that may be.  lol  And, they knew docs all over the country.  Boy, have my priorities changed.

I'll get back to you, for whatever it's worth.  Can't hurt, right? Char

[FlGuy]

They'd probably want to test the dog.  I imagine they probably run a pretty tight inventory process for the meds disbursed, used and remaining.  Make up a placebo at home and give it to hubby.  Heck, he was an early responder - he''l never know the diff.  By the way, is he a geno 2 or 3.  Hope the anser is 2.

[prettydamscared]

You're full of amazing ideas.  Placebo to hubby.  I must be slacking....don't know why I didn't think of that. It's almost as good as mremeet's idea about the glucose pill testing thing.  Sometimes I think someone should do a study on productiviy in the work force among heppers who actually make it into work.  I've barely done one thing today except be on this board.  Are you in rare form today or are you always this funny?

Hubby is 2B.  What are your stats, if you don't mind me asking, although I think I remember.  Hope I'm wrong though.

CHar

[FlGuy]

I'm a relapsed 3a.  Treated 6/05 - 12/05 and got the news 5/06. I'm tuned into things vx because I hope to be considered for the relapser trial.  I have an appointment next week at a Univ clinic where they do VX trials and hope to jump up and down and wave my arms to them until I get their attention. The slight rub is cirrhosis. If not vx, will ask the liverheads to recommend the approach that my tx doc will take on Act II with traditional combo.

[prettydamscared]

Dam, that sucks.  Doesn't it usualy work that if you're svr at 6 mos., you're pretty much home free. So, you were almost there.  I seriously can't even imagine that disappointment.  I'm not gonna dwell on that because you've accepted it and known it for over a year, right?  I'm just getting acclimated to disappointments like that.  It just blows me away sometimes. Anyway, moving on, do you have any idea what your chances may be of getting into the study.  I know for the study that I'm in, bx had to be recent, 1 yr. or 2, can't remember, stage of liver damage had to be mild to moderate, but with non-responders that parameter couldn't be the same, correct?

[FlGuy]

I just put it together.  Your hubby is slogging out the final 12 weeks and you will be starting VX950 soon. Now that sounds like an interesting household. I guess there will be many weeks of overlap.  Good luck to you both.  I got to tell you, if I was your hubby, nearing the end of tx, and I knew there was VX in the house.....

[prettydamscared]

Good for you.  Here's hoping that you get into a non responder trial, that there's no placebo in your study and that you achieve svr.  Oh and that you regress a stage or 2.  I think all that's possible, with the possible exception of the placebo part.  That's wishful thinking.

I'll be looking forward to hearing about your consult next week.  Is it you that's being charged $600. for that consultation or am I mixing you up with someone else?

[FlGuy]

The consult is about $550. The cirrhosis/biopsy/trial exclusion stuff has me a little pessimistic about vx participation. Current doc says I have cirrhosis and have a bunch of observable indicators of cirrhosis.  The bx report says 'evolution towards cirrhosis'. The clinic I'm going to does not want me to bring slides. So the most I may get is a very experienced liver doc telling me how next to do traditional combo.  With time marching on, I need to do something in the next few months. But Schering, with another protease inhibitor is still out there - don't know those specifics though. Had last bx about a year and a half ago. So, if I had another - even with 6 months of tx in between, I have no idea what it would show in the way of progression or regression.