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  • Question on EPO injections?

    Hi everyone,

    I'm teetering between Stage 3 and 4 CKD and just started EPO injections to raise my Hemacrit and Hemoglobin levels. Has anyone else had these shots and if so, how long was it before you noticed an improvement in how you felt? Did you feel better after a few weeks or did it take months? I guess I'm impatient but would like to know what to expect. I won't see the doctor for 8 weeks when I have my levels checked again. In the meantime, I feel like a useless human being and my life is ticking away.

    Carol

  • #2
    Re: Question on EPO injections?

    Carol, it takes one to two months to really see a difference from Epo injections, but the difference is dramatic. You will have a lot more energy and your hemoglobin and hematocrit levels will rise. When I started the injections my hemoglobin was so low (4.5) that the doctors were amazed that I was able to stand up. It took about 2 months of injections 3x/week to get me up to 8.0 and at that point I felt like I had been given new life. Now I get them as a part of my dialysis routine and they adjust the dosage to maintain me at a hemoglobin of 11.5 to 12. You don't want to get any higher than that or you will run the risk of blood clots. That is why they test you frequently. You will also probably have frequent adjustments in your dosages.
    To the stars through difficulty!

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    • #3
      Re: Question on EPO injections?

      Anybody on EPO injections suffering from heart problems? A friend of mine who has polycystic kidney disease has been on the EPO injections for two years. She told me that the side effects can cause heart attacks and just three weeks ago she ended up in the hospital with a racing heart - the docs told her it was due to the fact that her anemia went through the basement and she had to stop the EPO injections.

      What are the side effects of these injections and do they pan out better for you in the long run or are you stuck suffering the side effects down the road?

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      • #4
        Re: Question on EPO injections?

        Hi Bikerchick,

        I've just started the EPO injections and I also have heart disease. I had quadruple bypass surgery back in 1999 and have been on disability ever since due to severe, diffuse coronary artery disease. My heart was my main concern with the EPO injections but my hematologist assured me they were safe. He said as long as they don't allow the Hemaglobin level to go above 12 I'd be okay. EPO raises the hemaglobin level and helps to get rid of the anemia so I'm a little confused as to why your friend's anemia got worse with the injections. Maybe I misunderstood your question? Hopefully, someone with more experience can answer you.

        As for side effects... the only thing I've experienced was a mild headache for about a half hour after the injection and I can't really say that it was the injection that caused it. After all, I'd been sitting in the doctor's office all afternoon and the headache may have been stress-related. I'd also like to hear from others who have heart problems and are on EPO injections. I definitely don't need additional risk of blood clots or heart attack... my risks are high enough as is!

        Thanks Chefnancy... I guess I wanted to hear that I'd feel better a little sooner but now I can look forward to it and plan all the things I want to do again once I've got my energy back.

        Carol

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        • #5
          Re: Question on EPO injections?

          I think I posted the last post as a bit confusing..so I will retype it here.

          The lady I am talking about has polycystic kidney disease. She has been on the injections for a while and told me that the bad side effects to taking the shots was heart attacks. She believes that her hospital visit was as a result of taking the shots for a long period of time which affected her cardiovascular system. At the same time she experienced this situation and ended up in the hospital, her hemoglobin and hemocrit was very, very low.

          So, I guess my question is, if you have to be on the EPO shots, are they worth the side effects down the road? I guess in some respects, everything we have to deal with in conjunction with kidney disease has it's side effects.

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          • #6
            Re: Question on EPO injections?

            For me the decision was based on my "quality of life" and I chose to take the risk since I was so exhausted and having so much trouble breathing that it was worth it in order to feel better. I don't want to spend each and every day feeling like warmed over doodoo to put it nicely. I think each person has to choose what's best for them. I hope your friend improves soon. Hopefully, her doctor will monitor her more closely in the future to avoid future heart complications.

            Carol

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            • #7
              Re: Question on EPO injections?

              I guess if it was me and I was feeling run down all the time, I probably would shoot for it also. I'm borderline and I'm up and down all the time so the doc won't give me the shots until it drops below 30. I have mostly good days, but still hate being cold all the time.

              Summer is coming and the back porch is calling...sitting in the sun with a cold glass of Ice Tea !

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              • #8
                Re: Question on EPO injections?

                Bikerchick... if I didn't know you were from Maryland... I'd swear you were a southern belle like me, only we usually drink sweet tea. Being a diabetic... mine is sweetened with Splenda! It's cold here in NC too...we had 6 inches of snow this week and it's been so cold that I've not ventured out at all. I also hate being cold but that's one of the pitfalls of anemia. I'll warm up just in time for spring I guess. So much for saving on the heating bill.

                I'm having a pretty good day... the sun is out and it's beginning to warm up a bit. My energy levels were pretty good this morning but are dwindling as the day goes on.

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                • #9
                  Re: Question on EPO injections?

                  Carol - no I'm more south than just NC. I'm more the carribean person - love Mexico and the water. Yeah, we had 3 inches of snow on Monday and temps in the morning are averaging 16 to 20 degrees. Today we had 31 - gosh, it's a heat wave!

                  I'll be a happy and content individual when the Baltimore summer gets here. Everyone complains the humidity is horrible, but I simply l-o-v-e it ! And I'll be happy to get my motorcycle out of the garage and cruise to work....

                  I often dream that when I decide to retire, I'm moving as far south as I can. I simply won't be able to tolerate the winters here in Maryland by then. I'm going squirrelly already!

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                  • #10
                    Re: Question on EPO injections?

                    I took Aranesp then ProCrit for 1 1/2 years until I started on Walser's diet. For some strange reason my hemoglobin jumped from 10.2 or 10.4, I've forgotten, to 12.0, then 12.9 in 7 weeks. They stopped the injections and I'll find out tomorrow how my hemoglobin is doing.

                    I think it is interesting that I had an injection on Nov. 3, 2007 and on the way home started having chest pain, went into ER that night having a heart attack (my 3rd over a 10 year period) and had a triple by-pass the following morning. But it was due to blockages, I don't believe it was the Aranesp. I had known for months what was coming. And no one ever said that the injection had anything to do with the attack. My hemoglobin had been about 11 -11.3 prior to the attack, but after surgery it was so low they had to give me transfusions.

                    I'm not sure how it all works, but if you are put on EPO injections and your hemoglobin got over 12 I'm sure they would stop them and in that case you should be perfectly safe.
                    My Writings

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                    • #11
                      Re: Question on EPO injections?

                      Oh Cassie... so you too know what it feels like to be in the "zipper" club! Heart surgery is no fun either so I suggest anyone that can avoid it should do so! I guess it's better than the alternative but still not fun. I worry that my hemaglobin will go above 12 before they check it again. I mean waiting 9 weeks total since the start of the injections seems a bit long to me but hey, I didn't go to medical school. He (the doc) seemed fine with it. I guess if I get so energetic that I can't sit still that might be a clue, huh? I'll let you all know if that happens. I'm not sure what the Walser involves but I'm already on a heart/diabetic diet and feel like the only things I'm supposed to eat are roots and shoots! Maybe I should add some cardboard to that?

                      Carol

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                      • #12
                        Re: Question on EPO injections?

                        My main side effect from the Pro-Crit injections was temporary joint swelling and pain. The results from the injections were well worth this side effect. My nephrologist keeps a tight watch on my hemoglobin and hematocrit and adjusts my dosage just about weekly. However, in the beginning it is not unreasonable to wait a couple of months for testing because the shots don't act that quickly. As my neph explained it to me, the closer my hemoglobin gets to 12, the more often they test and adjust dosages. Right now that is weekly because my hemoglobin sits consistently in the 11.5 to 12 area. Right now with getting small doses 3x/week I don't have the extreme joint pain that I did with the bigger, less frequent doses.
                        Bikerchick, if your friend had a drop in her hemoglobin/hematocrit it couldn't be due to the injections as their effect is just the opposite. Maybe she had an ulcer or an aortic bleed or something to make her counts bottom out.
                        To the stars through difficulty!

                        Comment


                        • #13
                          Re: Question on EPO injections?

                          Originally posted by Legswilson View Post
                          Oh Cassie... so you too know what it feels like to be in the "zipper" club! Heart surgery is no fun either so I suggest anyone that can avoid it should do so! I guess it's better than the alternative but still not fun. I worry that my hemaglobin will go above 12 before they check it again. I mean waiting 9 weeks total since the start of the injections seems a bit long to me but hey, I didn't go to medical school. He (the doc) seemed fine with it. I guess if I get so energetic that I can't sit still that might be a clue, huh? I'll let you all know if that happens. I'm not sure what the Walser involves but I'm already on a heart/diabetic diet and feel like the only things I'm supposed to eat are roots and shoots! Maybe I should add some cardboard to that?Carol
                          Zipper club for sure, Legswilson, and a few others too. LOL! Insuln receptor cell shock after the heart surgery that they said no one survives, Neuropathy, no balance due to nerve damage, charcot arthropathy, braces on both legs, near ovarian cancer, diabetes, CKD, retinopathy, now today I was given an inhaler and told I might have asthma as I'm having trouble breathing especially in the cold weather....uhhh....LOL! I just keep going! I'm an Energizer bunny! I just don't hop any more!

                          Chefnancy assured you that you will be fine for those 9 weeks, as she rightly said, it'll take that long to build your hemoglobin up. Once they get it up to a comfortable level your doc will most probably order monthly labs, or that has been my experience.

                          Walser's diet is prescribed in his book, Coping with Kidney Disease....Help you Avoid Dialysis. It is a diet of extremely low protein (20 to 21 grams per day) supplemented with only essential amino acids. My GFR increased 11 points in 7 weeks on the diet. I'll find out tomorrow how I'm doing this month.

                          I found out today that my mom's BUN is 33 and her GFR is 48. She does not understand what those figures mean--right now they mean nothing to her. She was reading me her lab test results over the phone. She will be 79 next week. What would any of you do? Would you tell her what those numbers mean or just let it slide? Her PCP, a family practitioner, has said nothing to her about it. Just wondering what others would do. BTW, this is why many don't find out they have CKD until in stage 4 or 5!
                          My Writings

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                          • #14
                            Re: Question on EPO injections?

                            Cassie,

                            I'm not sure that I would tell her right now. It's my understanding that GFR typically drops with age and at 79 you have to wonder if that's not considered normal. Maybe that's why her doctors didn't say anything. Does she have underlying health conditions that would warrant immediate attention? If not, she may go on for years with her GFR only making a gradual decline. Just my thoughts. I don't know her medical history. You know better than anyone else whether or not she would benefit by knowing or if it might only upset her.

                            Carol

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                            • #15
                              Re: Question on EPO injections?

                              Originally posted by Cassie View Post
                              I found out today that my mom's BUN is 33 and her GFR is 48. She does not understand what those figures mean--right now they mean nothing to her. She was reading me her lab test results over the phone. She will be 79 next week. What would any of you do? Would you tell her what those numbers mean or just let it slide?
                              Hi Cassie,

                              This is a tough one! I would say that it all depends on how much she takes care of herself. If it were my mom, I would tell her what I know as she does not take care of herself. Actually, she may not listen to me. When I was in HK, she was forcing me to eat meat and seafood everyday. I was trying to explain to her about the limited protein intake. She then said that she is a Chinese and would not believe the western way of handling CKD.

                              pal

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