Dropped my Riba yet again

Took my second procrit shot today...  Not so sure I like this it makes me feel wierd.  But right after that my specialist called and tuesday's bloodwork came back at 9.6 while that is low, last week it was 8.7 and they dropped my riba from 1200 to 1000 now they want me to drop it to 800 and I'm not so sure I want to do that.   I was told it takes a couple weeks for procrit to start really working. And I just feel like they need to give the procrit a chance to do it's job before lowering again.  I just don't want to take the chance of messing up my treatment and not becomming UND. And I feel like they are jumping the gun.  I have heard sometinmes it takes a long time to get back up to even 1000 mg of riba, and that may mean longer treatment and I really donm't want to do that. Am I wrong or should I stand up for what I think.

[Mister beagle bailey]

If I remeber right, your a 2 right?  If so the normal dose for riba for 2's is 800.  That's what I was on durning my tx treatment.  However, being your HGB has come up a lot and shows the procrit is kicking in fast, I don't know why he would drop it down.

Beagle

[sfbaygirl]

Yuck! I have such brain fog I have forgotten, are you in a trial? If I were you I would NOT drop the Riba and go for a transfusion first. Yes, it takes time for the procrit to work. You are doing this in your first 12 weeks, right? It is important that first 12 weeks to keep full dose. I doubt one Riba will make a difference, but going to 800 is a big drop.

Since you went to 9.8 this week, a jump, I would fight them on this new drop. Just my opinion!

What geno are you? I need to keep a notebook to remember everyones stats. I feel so dumb, when I keep having to ask!

Be well! I'll be thinking of you!
Linda

[Pauly Boy]

Wow... Listening to you takes me right back to how I felt when I went thru the early stages of my drop in HMGB. I dropped more than 3 points in a week. Everything you are feeling is normal. So I hope that this will help relieve your anxiety a bit. I had never felt like that before and my fear was that regardless of what could be done I'd never get back to the way I felt pre-tx. I was wrong so far! I went on procrit. Within a week I no longer was out of breathe walking thru the house. I was still fatigued but at least I was not panting like a dog. The next good thing was that my HMGB nubers stopped going down and very slowly ( a couple of tenths each test) they rose. My doc also suggested doing a transfusion, I said no thanks but others here have had a good experience with that. At about the same time my doc suggested that I take the riba down to 1000 from 1200. Others have been advised to do this as well, so I felt comfortable doing it. My reasoning was at least this way I'll have a shot at getting thru tx. If I was you, I'd have a pow-woo with the docs, talk about it, get it all on the table and then make the decision you feel is the right one, after listening to the input. Sorry I do not have any other experience regarding the riba thing, but I'm sure others here will and so will the pro's. Good luck. Hoping you get the answers you need.     Keep killing those bugs!!!      Pauly

[GrandOak]

Based upon my own personal experience, I would say you are perfectly right to stand upon what you think is right for you based upon qualified information.

For me, Procrit, or increased dosages of Procrit, have taken about 3 wks to fully kick in and have the desired effect.  Their PI claims that studies show it can take anywhere from 2 to 6 wks to become fully effective.  The fact that you're already showing an increase after a couple should be encouraging and I too would be reluctant to cut Riba at this point.

But then again, I've been through the fire of having Riba cut prematurely and perhaps unnecessarily within the first 12 wks of tx and then struggling for months to regain proper dosage.  I only pray that it has not compromised my chances of attaining UND and eventually becoming SVR on this extended round of tx.

[GrandOak]

I forgot to add that I'm on yet another round of tanking Hgb, and associated anemia sx's, and this weeks lab following Neupogen tx should that it seems to have leveled out as it was only down to 9.5 from 9.8 last week since I increased my weekly dosage of Procrit from 80,000 U to 100,000 U. That was even before I took my first full 100,000 U injections at same time Monday evening and only had the extra 20,000 U increase I took last Thursday when prescription increase was filled.

[painterlady13]

I am a 1, can't remember if it a or b, and I am not in a trial... I was ok dropping riba to 1000 but I really don't want to go yet again to 800.  I still feel a little fatigued but I have made it to work all week at the 9.6 level and that is better than I did all last week.I only made it to work 1 1/2 days out of 5 and I see the hgb going up not down.  The CC that called me about dropping my meds was not even my reg CC and I didn't feel good arguing with her but I think I will try to get ahiold of my reg CC today or tomorrow.

[painterlady13]

And I am only taking 40,000 a week of the procrit. No I don't think I will drop it till I talk to the Doc. personally.

[MissMiss]

My goodness, you are on 100 Procrit?  Ouch.  How is your bone pain?  Can you remind me of your stats, which week?  I still can't remember details like that much, sorry.  

miss

[NYgirl]

PROCRIT CAN TAKE FROM 2 - 6 WEEKS TO WORK!

They shouldn't be dropping you anymore until it's had time to get those good red bloods growing in your bone marrow again.  If it's only your second shot....it's not had nearly enough time to do the job and you WENT UP!

I'd definitely positively ask the doctor THAT before I let him drop the meds any further.  I'm serious!

My first shots didn't raise my hgb one bit (just kept it from falling more). After a full MONTH we increased to 2x a week and that did it.  The body needs TIME to produce what you need, it's NOT a  miracle fix it shot that acts in an hour.

BLAH!

[GrandOak]

painter:  NYGirl is both 1 A and B, I'm 1A.  My experience has been that the first time bottoming out is the worst.  Haven been on a Hgb rollercoaster ride for a few months now, I've found that subsequent drops were not as bad.  Although recent drop back into 9's was a bitt rougher than others, probably because it's been awhile since I been down to this level of the basement (hmmm, could use a good dusting down here too ;-).

missmiss:

They wanted me on 110,000 this last time but felt it might be too hard to properly dose given how med is distributed and trying to minimize how many injections I'm taking at one sitting (Probably worried that I might become like an ol' can full of bullet holes that would have serum leaking from other injection sites before I got done with all the shots).

As for tx, I'm either at wk 30 or 4, depending upon how one looks at it.  Total tx is 30 wks, but it's only been 4 wks since attaining 1400 mg of Riba.  So for tx orders we are now considering it 4 wks with target of another 68 wks (98 total) if VL shows 2 log drop from initial 72 mil baseline.

As wk 8 was 2.4 mil, wk 12 1.8 mil, and wk 24 2.9 mil, I'm keeping faith that in another 8 wks that I should reach the 720,000 (or 2 log drop from 72 mil).  If not, well we could be in for an interesting discussion with doc as I'm not prepared to throw in the towel nor wait around for Vx950 and such since I was already beginning stage 4 when bx was done last Dec..

[Mister beagle bailey]

Being your a 1, I would fight to keep your riba up as you are a fast responder to procrit.

Beagle

[NYgirl]

GrandOak is totally right the first time was horriblle - but this time I went down to 9 again and didn't even KNOW I was that low. No fainting - nothing.

If I wasn't having the blood tests I would never have known. That would have been bad.

It's unbelievable how after a year = you get so USED to feeling poorly that it just is every day life and in a way...it doesn't feel that BAD anymore, just NORMAL.

I can't wait to see someday what I really feel like again.  My God it will be like the best "drug" in the world.  Health.

Here I had this gift all of my life and never, ever knew it and just b*tched and complainned all of the time.

LOL.

[Gonna beat it]

Isn't that the truth, you don't realize (not to age us or anything), but your health is the greatest gift, and thinking back on the different abuses I have done, boy if I knew then, OHOH another old lady comment LOL....Actually I posted earlier this week how good I felt, day three I'm still feel great....
tomorrow is my seventh shot..whooopeee

[Morgaina]

I guess duct taping him was the last straw! I wish it was more of a humorous situation but it just never is. Great idea not to react and fight, it takes SO much out of a person. If he ever makes the mistake of hitting the wrong button, he'll begin to understand Riba and it's rage. I guess there are a few ways to help others understand thehorrible drugs and their effects. I hope things get easier for you, Peace to you!

[MissMiss]

Painterlady:  I gotta agree with the rest, try to keep your riba where it is.

Grandoak:  I thought I remembered you were "extending" but wasn't sure.  Praying this works for you in the end.  I'm curious why they would up your Procrit so high when you are in the 9's and have so far to go yet.  Hopefully, you will get above 10 and they will reduce it back down.  I'm sure you have, but if not, I would suggest you read the online pdf file that is the same as the small print one in the package so you are aware of the pitfalls of Procrit.  Also wondering how much bone pain you are having, if any.  You said you also take Neupogen?  

I'm still on 120 a week and last hgb was at 8.8.  We won't check again until next week and I am hoping he reduces it and my hgb is up.  Based on how I feel I think it is coming up but still get so breathless and my legs still hurt real bad.  

Best to you both!

miss

[Gonna beat it]

Laying low, no energy draining fights, I just need peace...so for the time being I'm keeping my mouth shut..How are thing with you?

[sfbaygirl]

Yuck, sorry to hear things haven't improved at home, that must be hard on tx. Tx is hard enough. Thankfully John is very supportive and has now decided he needs to go the my dr appts so my brain fog doesnt' kick in. The shrink wouldn't let him in and he was furious when he didn't give me anti-anxiety meds. He called him up and the dr. relented. It's nice to have an advocate. The shrink did give me Lunesta, which kept me asleep last night. Problem is, those dang butterflies are still roaming around in my head and it's 1PM! It could be the shot I took yesterday. I don't seem to have any sx until a day or so later. I was down for a few days. Just so tired of dealing with all this stuff. This has to be the hardest thing I have ever done. My spirits are better now. When I do something about what's going on ie; seeing dr's etc. I feel alot better, even if nothing has changed much.

[GrandOak]

As nygirl pointed out, after feeling lousy from anemia for so long it begins to feel normal.  I've found the same with the neutropenia, bone aches are occurring all the time and I only seem to temporarily notice when they begin shooting from a different location.

The worst is when the joint strength weakens, particularily the hip joints.  When that happens, it seems like others look oddly at me like I'm drunk or something.  Kind of hard to accept since it's been 16 months since I've even touched anything (i.e. even cough, cold, & flu medications) with a drop of alcohol in it.

Oh, and the aches when I try to sit, kneel, or stand can be very uncomfortable too.

[Gonna beat it]

Just to sleep throught the night is such a blessing, We haven't been fighting much, I think he's shopping for my replacement, poor foolish man, he doesn't realize I can't be replaced...

[Kalio1]

you got it girl. they don't know what they've got til it's gone. You stay strong.

[sfbaygirl]

No fighting is good. The ol' silent tx works, but sux. I don't have the energy to fight and am glad John will take that on for me. I still bite his head off at times during Riba rage, but he now recognizes it in me. Fighting with others is just outta the question, I am too fragile and can't handle the stress. I am now a real whimp and will hide under the bed when any conflict arises.

If yours is off shopping for a replacement, you probably get a little more time at home alone. That is good, huh?

[iceboy]

my two pennys are; depends on how you feel, if you have any hart condition or other factors to consider. Anemia can be very serious condition. The treatment is not worth it at "any cost" Of cause it is uttermost important to try to keep the full dosage, but unfortunately some people can

[mycoldfeet]

Ya know, I really liked your post, it hit home, after tx I had a year and a half to get right again, then relapse and back on the meds but IT FEELS GREAT to get to know yourself again.

[mycoldfeet]

When you said you dropped you dropped your riba once again, I thought of me two days in a row dropping a riba pill on the floor and chasing the cat and dog away from it on my hands and knees, Don't mean to make light of your situation, thought you would get a laugh from mine

[sfbaygirl]

Shot 7, WOW! How come your shots seem to go faster in pace than mine? I did 18 yesterday and am still waiting for the sx to hit. Tanking blood counts again, so I am in for some rescue shots next week. I am glad to hear you feel good. Hopefully, the shot will be a little blip and you will feel great next week too!

How's everything at home?

[Gonna beat it]

Thanks kiddo, I don't get it but I've kinda been in this Zen Place so to speak, this week I have felt so good, and calm if that makes since. To quote the late great John Lennon "All We are Saying, is give Peace a Chance" But don't get disappointed, I still have that case of 3M duct tape under the bed:)

[Gonna beat it]

Still waiting for the patent LOL.

[sfbaygirl]

So you're Zen, huh? Just wait 'till that Riba Rage hits! I think we could use a virtual version of that fan around here sometimes. LOL

Shot day today for you? Hope this week as good as your last(not the weekend)! I'm actually feeling pretty good too. I even got an old computer out to work on, fixed my step daughters and am looking at the other 13 in the closet. Hope it lasts!

[sfbaygirl]

How about that fan you were building?