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procrit question

Hello- I've been following this forum for awhile. I'n on 16/24 not detected by qualatative on #11.   I have an appointment with a hemotologist on Tues. who can start me on procrit that day. But, my injection day is also Tues. and I read here that it's not good to do them both close together. If the hemoglobim doesn't fall too much in 6 days I can probably wait for proccrit till next Thurs. or do it on Tues. and following ones on Thurs. Any opinions to help me out?  Is it dangerous to do them both on the same day? Thanks
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Avatar universal
Advice very well taken.  I have cut my "power" out of the walk for a moment....until I can get these counts up a bit. Did go from my 1.5 mile walk tonight but took out the momentum!  My increased dizzy spells and blurry occasional vision is a challenge although I still feel fairly good.....My freinds/family think I'm too busy all the time but I would go crazy NOT being busy and doing! I've always been one to keep active and will keep busy as long as my "blood" allows me to.
Your food story was hilarious!!!  I laughed out loud.  I've never had that combo of shrimp and cherries but I guarantee I won't be trying it anytime soon after your story! (although I just love both....but maybe not together?) Congratulations on you negative cryoglobulin test.....Getting sick on celebration food still was worth getting that WONDERFUL news. I'm so happy for you.
Got news from the last labs yesterday...Hemoglobin took another dive and is now 7.5.....but the doctor still tells me he is not too terribly concerned as I'm functioning fairly well.....I guess I am adapting but at what point does my body just say enough is enough?....time will tell I guess.  I asked the doctor to raise my Procrit to 60,000units and they refused until my WBC counts get addressed. I now have to see a hemotologist for my WBC count problem this tues.  I dipped to 1.8 and the doctor told me I need a plan of dealing with both the hemo and the WBC from a hemotologist at this point. I don't know what my ANC is as I was kind of rushed off the phone and didn't get the full lab results.  I'm getting a copy tomorrow.  I'm very pleased to go see the new doctor....I'm hoping for a new plan of attack with these issues.  Iron issue is yet to be resolved....waiting on results. So now that my stomach issue is feeling so much better (thanks to YOU), it has been replaced by this new issue of blood counts.  Never a dull moment on tx as you well know......I think I'll get up early and go for a "NON" power walk and get motivated for this blood count battle ahead......Promise......walks will be less "assertive"...another piece of good advice from you!
Thanks for sharing your food story.......still chuckling here! You have a way with words!......and food.
Best to you Ina, Scott
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Avatar universal
Were they Rainier cherries?  Those beautiful, luscious yellow ones?    Once I start with those, I can't stop.

Susan
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When we get beyond this tx and Hep C we will never take a day for granted will we. .......oh, yes, breakfast for me is what I look forward to most.....the other meals I could take or leave!  Before tx I hardly ever ate breakfast.....it is odd how I've adapted to tx and now find the rewards in the samll things in life! In so many ways this Hep C was a great "wake up call" as I have a new appreciation for the smallest things around me and those I love.
Keep us posted on the staff results..in the meantime good luck with all that faces you.  As always my best to you,
Scott
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Avatar universal
As always so good to hear from you!  I'm so glad you seem to be doing a bit better with the stomach issue....In a way I'm hoping that your recent staff infection was contributing to the stomach problems.....maybe now that will have a chance to ease up for you now that the staff infection is under control.  You are certainly correct....never a dull moment...it keeps us on our toes and in my humble opinion has made me a much stronger person ready to face anything put before me!
Speaking of putting things before me I have signed up for the next trek up mnt. Everest when this is finished and I move on with my life!!!  I just loved your idea!......well..... maybe not Everest but I do have some plans for some serious hiking in the Sierra Mountains next year when I get beyond this tx. That I've promised myself as it is one of my favorite places to hike!  For now I'm doing hiking on my "good" weekends in the Blue Ridge Mountains which I've been enjoying but can't do too much due to my anemia.
Thanks for your continued support.  I'm not letting this anemia get to me......although it has it's challenges.  Iron store test I had done yesterday thanks to your suggestion....I'll see what the results are next week along with my dreaded Hemoglobin and WBC counts.
Thanks again jmjm....you are always so very helpful.
Scott
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Avatar universal
Scott,

Whether Everest or a smaller hill, you seem to have the genetics to adapt/function at a low hemoglobin level. Hopefully, this fact, along with possibly some more Procrit and iron if indicated will keep you crusing right through tx. In fact, the way you function, you may not need anything but let us know how all your tests work out. (If you haven't already, you might read "K2, the 1939 Tragedy..." by Andrew kaufman and William Putnam"...now here are a bunch of guys who could have used some Procrit if only it had been invented. LOL.)

Re my gastro stuff...also kinda hoping for the staph infection -- something to hang a lot of my symptons on and then cure with some antibiotics. Tests will be back early next week, but regardless, I'm gonna suggest to my docs a round of antibiotics anyway. Just not sure I can take them until I finish my UVB therapy for the psoriasis flare up. It's never simple. LOL.

The good news is that even though somethings still going on with the reflux, for the first time in months I've actually been able to sit down and enjoy a real breakfast. It's been so long that it's actually the highlight of my day now. Amazing the simple things in life you take for granted when you're not sick.
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Avatar universal
Sorry, the correct spelling is "guttate" psoriasis.
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Avatar universal
It was so good to hear from you BOTH.  

jmjm:  Thank you for suggesting I check out my iron stores.  This is important as I re-read the Procrit insert and it confirmed what you just told me. In the beginning of treatment I was told to take a multi vitamin without iron which I've done for the past 26 weeks but maybe now given my low counts the doctor would allow iron in my vitamins.  I'll make a call to him tomorrow on this issue and HOPE I hear back.....one never knows even as I've become a professional squeeky wheel!  I spoke today with the Roche nurse whom checks in on me and she discussed a possible transfusion as well.  She however did say that if I'm functioning at those very low levels, which she found hard to believe, that I may be able to buy more time before a transfusion.....so for now hopefully I don't have to go down that road.  I'll keep you posted on the iron issue and that mey be a way of helping with the counts.  Thank you....as always you are so very helpful and caring. Best to you and how are YOU? I hope your stomach is cooperating.....are you taking low doses of Xanax when you eat and is it helping you?....I hope so.  Scott

Artgal:  I am so happy to hear from you...you have been on my mind and I've wondered how you were holding up.  I did actually find your thread about feeling emotional more than usual perhaps and I'm sure you found some peace knowing you are not alone.  I too have become very emotional....but this isn't somthing new for me so I can't blame tx totally for it (although it is heightened).....I've always cried at the drop of a hat......yes, unusual for a man but I like to think I'm just a very sensitive one...not a sappy one!?  I cry when I read cards in stores as I'm picking them out for those I love....very embarrasing in public but it is uncontrolable at times....and those commercials on t.v. get me too!...maybe I am sappy?!  I'm so glad you are hanging in there ......I KNOW this tx is difficult at times but it still has been easier than my fears before I started.  I also really appreciated your kind words regarding my hemoglobin problems.  I guess I'm mystifying my doctor and nurses as they think at my levels I would be "living" in bed.....but I refuse to give into this and I'm remaining as close to normal as possible.  I feel so much better if I do my "power walks" every day and I'm still working every day as a free lance artist as I'm a textile designer....so I remain busy which I personally think helps. But , this anemia is a huge drag and I'm getting more nervous about it.  I appreciate your thoughts and kind words.  I know I can get through the remaining 5 months of tx!....I have remained in a positive frame of mind which gets me through it.
I am so glad to see you posting...I was worried for a bit as I hadn't seen your name pop up and I was HOPING you were well and hanging on through your tx journey. How many weeks do you have remaining?  I know you are enjoying marking each week off that calender as I do!  
Did you ever find the particular materials you were looking for for your jewelry designing/lamp designing?(was it a particular glass?)  I know you were searching for it a couple months ago.  Hope you are holding up in good spirits....even with your lucky surfer "dude" son away in Ca!  He is a lucky young man.....surfing in Ca AND having such a loving, intelligent, and compasionate mom as YOU! My best to you and thank you for your support as always.
Scott
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Avatar universal
Thanks for your kind words.

It IS amazing how you function at those low hemoglobin levels. After you finish treatment, you might consider climbing Everest. Seems you have the genetics for thin air work!

Regarding the iron, just make sure your iron stores are low and try to find someone knowlegeable to guide you. But it seems a good option before having a transfusion if you have the time.

For what it's worth -- and it's not an exact comparison -- in the Swedish High Dose Ribavirin study, everyone was put on both Procrit and supplemental iron and they had like a 90% SVR. So apparently, iron will not hurt your SVR chances.

Regarding my sx, the Xanax helped my stomach but I was stumbling around the house like a drunken sailor so I switched to Lexipro which screwed up my stomach worse than before.

I'm doing a little better this week with relaxation exercises and was able to gain back a few pounds. Since I just had a Cutea psoriasis flare up, the literature suggests I may have had a recent staph infection. One of my doctors thinks this may be the cause of my gastro problems as well. Waiting for some tests to come back. Never a dull moment on treatment. LOL.




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Avatar universal
I have been wondering how you have been -- I am glad some of your issues are improving. Your hemoglobin is so low -- it is amazing you are able to do the power-walking and function as well as you seem to be. I know when I was at 9 (and as a female that is nowhere near where you are) life was very tough. Just want you to know I'm thinking of you and hope you reach a positive resolution for the anemia.
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Avatar universal
Sorry about the anemia. 7.7 is very low and you may need a transfusion if they can't pump the hemo up soon. The good news I believe is that the transfusion gives very quick results both in hemo change and energy levels.

Have you checked your iron stores?

Procrit doesn't work very well if your iron stores are getting depleted. So while iron supplements generally aren't recommended for people on treatment, they are indicated in some cases.

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Avatar universal
Good to hear from you....nice surprise!  Thank you for asking about my other "issues" as you know my diet in's and out's so well!!  I am so HAPPY to report that I took alot of your advice from our thread previously and have dropped all vinegars, tomato sauce, orange juice, spices, garlic and onion, and my stomach has rewarded me with a wonderful reduction of pain and discomfort and nausea!!!  I am so pleased!  I still have boughts of stomach discomfort but it has improved so much!  I am still taking about 2-3 Ranitadine a day but the best part is the nausea is SO much better.  It has been about 4 months of stomach horrors and this is the first break I've had.  I don't know if this also has anything to do with the lesser discomfort but I recently decided to get more active like I was many months ago at the beginning of treatment.  When my blood counts dropped I slowed down on excercise as I got too dizzy....but now even with my low counts I am forcing myself to get out and "power walk" which may be helping with my digestion and stomach pain?  What do you think. It seems the more active I am the less stomach problems I have. I've also tried Califia's suggestion for peppermint oil which may also be a factor... Thank you so very very much Ina for all your help with this.....I am finally feeling some relief!  Are you a nutritionist? ....if not you certainly have ME as a patient in your care!
As for my neutropenia I am still hovering at about 1.8 +-...I'm getting another blood draw this friday for my hemoglobin as well as WBC. Doctor didn't send me as threatened a couple weeks ago as it raised to 2.0. The doctor told me if it stays where it is much longer and if my ANC goes any lower he is sending me to get help from a hemotologist.  I'll know more by monday.  Hoping to avoid more shots but I'll do whatever I have to.  SVR is within my reach and I don't want my blood counts to interfere with my goal!  My blood sure has taken a beating however with Hemoglobin at 7.7 and WBC at 1.8 but I still feel surprisingly "human" and am still very active in my day.  The doctor keeps asking me if I'm functioning at these levels ..and I am....so maybe I'll be able to get through this at these low levels for the remaining 5 months of tx without compromising the outcome?  Time will tell.
Thanks again Ina for all your support and wonderful suggestions.  You REALLY helped me when my stomach issue was getting the best of me! I'll keep you posted.  In the meantime I hope you are doing well and you are enjoying life.
Best to you Ina,
Scott
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Avatar universal
the Procrit can be upped more, some people on dialisys take up to 80,000 a wk.

I don't see how the shots should be spaced, since it is not the interferon that is causing the anemia. maybe the dr wants to differentiate between side effects and is hard to tell which med is acting up when taken at the same time.

I was lowered to 800mg for about 3 months, the idiot PA forgot to up it again after the Procrit worked. That was another reason I chose to extend.

THe insert for Procrit has dosages that are recomended for stubborn anemia, check it out, some people get transfusions with hgb that low.
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Avatar universal
Thank you for your response.  I'm going to the Procrit insert right now to see what they recommend for stubborn anemia as per your suggestion. It has been suggested by my doctor a while ago (but not recently) about a possible transfusion to help if it doesn't improve as my low numbers over a long period can be dangerous. He is concerned but seems to not be making new decisions as of yet.  I get my blood drawn every two weeks as this has been an ongoing problem.  I was told this friday's blood draw is critical but not sure what is going to be decided if it is still too low. Of course I'll do anything I can in my power to avoid getting transfusions. I will suggest raising the Procrit dose per week.
Cuteus that you again for your input....you ALWAYS are there when I needed.....I thank you for that so much.
Best to you and hope you are well.
Scott
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Avatar universal
I hope I don't confuse the issue but my doctor specifically told me I should NOT take the Procrit shot within two days of the interferon shot. He was very sure of his stance on this issue.  It was explained it will work but not nearly as effectively if it is within two days before or two days after the interferon.  It seems like so many above who have posted didn't get this same "story" so I'm at a loss which approach is correct.  In the meantime I'm happy taking Procrit as directed by my doctor as I want to definately give it the best possible chance to help me as much as possible.
All this said I must admit that my Procrit seems to not be helping me as much as the doctors had hoped..even taking it WHEN they told me to.  My hemoglobin for well over a couple months has been hovering about 7.7 which is very low for a male.  I'm at a loss as to what I should do as I just refuse to lower my dose of Riba. So far my doctor is being patient and working with me by not suggesting dosage reduction but that may be around the corner.  Any advice on HOW MUCH Procrit I could be on is appreciated. So far my doctor hasn't suggested upping the units per week. I am presently on 40,000 units 1x a week.  So I'm not sure I'm giving great advice here on WHEN to take your Procrit as it seems to be stubborn in helping me. (although about 3 weeks after taking it I felt like a differnet person...initially it worked so wonderfully!...but not now for some reason unknown to my doctor.)
Lifeisgood: In any event I certainly hope for you that Procrit gives you the relief you need from the anemia.....Anemia is my most major challenge on tx and it isn't a picnic.
Best to you, Scott
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Avatar universal
Sorry to hear about your thyroid.  The interferon can cause failure.  Usually one goes hyper then hypo and you start on thyroid replacement hormone.  I can relate to showering then having to sit and catch my breath before I could dry my hair.  My red cell count never got quite low enough for procrit, but once I started on thyroid meds I felt much better, in fact, the H&H actually rose for a month.  The thyroid meds take a while to get adjusted, but if you need them they will make you feel much better.  Good luck to you.
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Neupogen is the one to space away from a weekly shot of pegylated interferon: 2 days before or after.
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I'm on daily Infergen and Procrit.  If I'm injecting Infergen every day, then there would not ever be a day that I could do the Procrit when I wasn't also injecting Infergen.  Soooooo

Susan
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Avatar universal
I would like to know about the neupogen shot timing as well, it looks like that the next step for me as well, ughhh! I just started Procrit 4 weeks ago, I'm on 22/48 right now. It has really made a difference in my QOL, I can shower from start to finish without a shower chair and I can make my bed again without having to take rest in the middle of it all.  I was just at a HCV support group earlier today and the RN's confirmed that the Peg and procrit shot can be taken at the same time, I do mine on Thurs and Peg on Sunday anyway.

This forum sure does crack me up at times, it's great, just when I'm feeling the doldrums about everything, I come on here and find myself laughing out loud and feeling so much better! Thanks again to all you wonderful people, your experience and knowledge are priceless and have guided me in my TX tremendously.

One question to throw in here, I was just told I also have hyperthryoidism and have more lab work to get specific info.  Whats this all about now? What kind of TX am I looking at for this condition. I was pretty schocked just hearing the info and didn't hang around long enough to ask more info.  Any help in this area will be so appreciated.
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good info about the procrit. how about the neupogen?  to space or not....that's coming up for me, i'm afraid
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I've actually just explored this very question this week as I seemed to have received a bad batch of procrit (foamy and just a bit weird). I usually do my procrit on Saturday and my pegasys on Wednesday as I was under the impression it was best to spread them out. BUT after this procrit problem, my schedule was messed up. When I spoke with my doctor's office regarding the timing issue, I was told it is no problem to do the two close together and in fact very often patients go to the doctor's office to have the nurse do their shots and she does them both on the same day.
I agree about getting the procrit into you as soon as you can. It took me a good 2-3 weeks to feel the effects on my hemoglobin. I was having a hard time walking up the stairs or making a bed without needing to lie on it afterwards!
Also, I have never felt any side effects from the procrit -- I didn't think it had any sides (maybe this was helpful -- power of suggestion and all that...) other than the initial burning upon injecting. I try to minimize the burning by iceing the area prior to injecting, doing the injection very slowly and iceing the area afterwards.
Best to you.
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Maybe you could move your peg shot one day forward or back? frank
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Avatar universal
I've never heard of that but maybe someone has different info.

Procrit takes a couple of weeks to kick in so I'd take it the day you can get your hands on it.

In my case, depending on my changing hemoglobin level, I've taken Procrit on shot days, as well as non-shot days. Shot days are more convenient because you can set up everything at the same time.

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Avatar universal
I was told to space mine out whenever possible, but I have injected both Pegasys and Procrit on the same day.  I wasn't told that it was dangerous, but I don't think it's advisable.  I was under the impression it was better for your tummy (if that's where you inject) to give it a break.

Has anyone else heard about any contraindications to injecting EPO and interferon too closely together?
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Avatar universal
I don't know of any medical reason why you shouldn't do both injections on the same day.   Both shots can cause "flu-like symptoms," however, and you might want to avoid a doubling up of the effects.  That's the only reason I can think of to space the shots.
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