I am CKD Stage 3 (tumor/cancer related) I am on a medication that reduces Hemaglobin and my hemaglobin baseline was 12. It has now become 9.4. They want to give me an EPO shot. I am rather concerned with this due to serious life threatening side effects. I would prefer lowering my dose of medication instead.
Do all CKD/Dialysis/Transplant patients take EPO shots?
At what level does EPO normally get given?
they say it’s given to majority kidney patients with no issues?
Concern I have is cancer risk, stroke, blood clot etc..
Thanks!
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Boxing
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Hi Boxing, I had the exact same concerns as you. I am CKD stage 5, not yet on dialysis and have been getting EPO shots since June 2023 with no problems at all. I believe my dose is 25 mcg. They give you the lowest dose they can to get your hemoglobin back up. At least that is what I was told. Unfortunately it doesn’t last very long and you need more EPO injections. I believe all dialysis patients need it. As for CKD and transplant, it would depend if your hemoglobin was low. I’ve been as low as 8.5. When I started getting EPO injections, I was CKD stage 3B. That is my experience with it. Hope this helps. Best wishes to you,
thanks! What is yours called? How often do you get it? And what level Hemaglobin do they target? Sorry for the questions.. just gathering my info! At some point I guess we have no option but to take it as kidney patients.. esp if your on dialysis I am just curious to know the actual stroke risk etc..
I take Aranesp. I get the EPO injections whenever my hemoglobin falls below 11.5. After I get to 11.5 they are stopped. I get the EPO once a week for 5 weeks. I’m usually only good for about six weeks before it falls below the threshold and I have to start another round of EPO injections. I just finished this latest round of EPO two weeks ago. I would follow what your doctor tells you to do.
I took Epo injections for a few years while on dialysis, they like to keep your hemoglobin between 11 and 12. Unfortunately when I only started them they weren’t checking my levels often enough and it got to 16 and I did have a mini stroke. I continued to take them because my levels dropped quite quickly again. So my advice is get your bloods checked and hopefully it will be short term use. I had no other side effects at all.
Yes , hemoglobin should never get that high but it could have been prevented if they had checked my bloods more often . The epo injections is raising the hemoglobin artificially if that makes sense and that’s why there’s a risk of stroke using them .
ah ok thanks for the reply. I have tumor condition so I gave benign tumors in the brain and spine and then renal lesions too! So that’s why my worry because EPO your causing cell profilaration..
Hopefully your doctors know what they’re doing and the benefit of using them outweigh the risk . And it might only be for short term use , once your hemoglobin gets back up to around 12 you could maybe stop them. Always ask questions , knowledge is power .
I have had EPO injections for some time. Currently I take 20 microgrammes twice monthly. that is the second smallest amount Aranesp make. The smallest is 10 microgrammes but it is not a retracting needle which I find much harder to administer. I have been having injections on and off for several years now. I had hoped that transplant would mean my haemoglobin would get back to normal, but that has not happened. My dosage has not yet settled down. I am not very anaemic but, as a competitive swimmer, I need a more 'normal' blood count or I can't train (my coach is very clear about this). I think transplant clinics like to see readings of 112, with normal being 120 - 140. My clinic understands my need to be able to train and allows me injections up to about 130. My blood is regularly checked.
You’re so lucky . No one will give me epogen injections after my transplant. I’ve been to two hematologists and practically begged my nephrologist who said it’s up to them.
I’m also on aranesp. They started talking about it when I dropped below 11. At the lowest it’s been 8 something. It’s been a pain with my insurance to get approved bc they denied saying I need iron injections - my iron levels are fine. It’s solely kidney related. But it’s helped a lot, no issues and I inject myself 2x monthly.
ah ok thanks for the reply. I have tumor condition so I gave benign tumors in the brain and spine and then renal lesions too! So that’s why my worry because EPO your causing cell profilaration..
It's 10.8 and I've been getting them every month but it's not raised it. I think part of the problem is every time I have a treatment when I take my bandages off I bleed due to taking blood thinners. Luckily I get to stop taking them Feb 9th so maybe my hemoglobin will go up. I also have low RBC and have had that for months.
Please ask your doctor about this next time you see him or her. I was injecting procrit for years with a good response. It worked when I went on dialysis at DaVita. Then I changed dialysis centers companies to US Renal Care, who used Mircera on their patients . Mircera did not work for me!!! It had no effect. Not all brands work for all bodies. I went back to DaVita and started their procrit shots again, and they worked.
Risk for stroke goes up the higher your hemoglobin is before the injection. My hematologist had me hold off when my hemoglobin was above 11.0
Every single dialysis patient I’ve known gets epo shots yes. That’s because their kidneys aren’t working. Working kidneys make a substance known as erythropoietin which cause your bone marrow to make red blood cells.
As your kidneys start to fail, stage 3B, stage 4, they make less erythropoietin so yes they become candidates for epogen shots.
When your level gets into the 8s they start talking about blood transfusion. If you ever want to get a kidney transplant, you do not want a blood transfusion because then your body will make antibodies to someone else’s cells.
I have been told personally by my transplant doctors that they do not give Epogen to transplant patients however, I suppose there were always exceptions.
thanks for the response! Is there a reason they don’t give EPO to transplant patients. I am not a transplant patient yet. My kidney function at the moment hovers between 3b/3a but at some point I know it’s going to need to come out due to the kidney tumors.
Transplant patients have one working kidney which should be producing all the erythropoietin that person needs. However several of the transplant ant-rejection medicines cause anemia. They don’t want you taking a drug with a risk of stroke to treat the side effect of another drug. Plenty of transplant patients stay in the 10 range and never get any higher.
The whole “I have so much energy after a transplant!” is NOT something that is true for all of us. I’m 18 months out and post transplant quality of life is not as good as what I expected. It is a “treatment not a cure.” A new kidney doesn’t just replace what your old ones did and you ride off happily into the sunset.
The anti-rejection drugs come at a high price.
I don’t feel as good as I did in stage 3A. I never will. I still realize I am incredibly lucky to get a kidney that works well, and no longer have to go to dialysis, or restrict fluid, or foods with phosphorus , etc. But I will not lie and say I am not disappointed, because I am. Transplant for a lot of us, is not what it’s cracked up to be. However I am grateful to have this second chance at a better life.
thanks for your reply! Interesting to hear.. so with the anti rejection medications are side effects stroke etc? What risk come with the anti rejection medications?
I do hope your kidney transplant last you for as long as possible! What is your egfr with the transplant?
I don’t know that you really, really want to go down the post transplant rabbit hole but here are few side effects.
No, they do not cause stroke. But.
Transplant drugs make you more likely to get lymphoma and melanoma, the deadliest form of skin cancer.
Some give you very high, difficult to control blood pressure, known as malignant hypertension. High cholesterol. Low magnesium.
Awful mouth sores.
May cause your hair to fall out, or hair to grow in places you do not want it to grow if you’re a woman, such as on your face.
Most patients are put on 5 mg prednisone and gain 15-20 pounds in the first year. Some keep gaining.
Fully 20% of all post transplant patients become diabetic post transplant. Surprise!
Hand tremors, very common.
Anemia.
Fatigue.
Doctors do not talk much about this because they figure you’re so desperate to get a transplant, why scare you? HOWEVER, pre-transplant you do sign a piece of paper acknowledging they have told you. They just don’t focus on it.
Creatnine is used to calculate GFR and is more accurate, according to my doctor. My creatinine is about 0.95. So my GFR is 69. Plenty of transplant patients are in the 50s. Normal is 0.6 to 1.2, slightly different for men and women. Transplant centers are happy with 1.5.
oh wow thanks for the response. My dad is a kidney transplant recipient he’s had it for 15 years now.. he’s doing ok. So with a kidney transplant you have yo perms you live on steroid medication? I assume this is to keep the immune system from attacking the new kidney.
Most though not all transplant patients are on steroids for life, yes. It helps keep you from rejecting the kidney, otherwise known as graft or solid organ transplant. Some transplant centers use a “steroid free protocol” because they believe the harms of steroids (diabetes, weight gain) out weigh the benefits. I “did my own research” reading reliable sites and studies as from the Cleveland Clinic, Mayo Clinic, etc, and your chances of not rejection are much better if you take steroids vs not taking them. I was going to be listed at one center that had a steroid free protocol but decided not to.
Also steroids “eat your bones” - cause bone loss.
The “medication dance” never stops. Few patients are on the same exact dose of drugs year after year. Everyone needs adjustments, as side effects pop up, you get sick so they have to lower the immune suppressants to help your body fight it off, etc.
Transplant is hard. It’s somewhat common to have to be re-hospitalized for a complication shortly after getting one. 1 in 100 patients dies within the first either month or three months, I can’t remember which.
You are fully informed of the risks when you are being evaluated for transplant. You will have to watch educational videos, read materials, sign forms acknowledging that you know. The transplant staff go over it with you. Only then will you be added to their list.
It’s not always easy to get on the list. It usually takes months typically though depends on the center. I had to wait three months to be evaluated, then another four before they would accept me on their list.
Transplant is very very complex and most don’t realize it until it becomes either that or dialysis.
About 40% experience some form of neurotoxicity.
So when you talk about taking a “dangerous” drug like Epogen…if you get a transplant, Epogen is far less toxic than those meds. Wtih Epogen the key is staying on top of your hemoglobin levels. It’s dangerous to inject above 11. Your risk of stroke increases. Centers don’t always do frequent blood tests. I once saw my hemoglobin was 13 and I said No you are not allowed to inject me until I speak to my doctor.
I do well on hemo. Work full time, appetite is good. Like others have said a transplant is a treatment not a cure and not everyone does well especially with the meds. I've talked to others who say the first year is especially hard. It's a choice. I'll continue to work towards getting back on the list but keep in mind I might stay on hemo.
Definitely get on the list so if you change your mind, you can get a transplant and will have time on the wait list. You can be on the list and always pass up any kidney they offer.
Transplant is NOT for everyone.
The fact is, however, on average, people who get a transplant live longer than those on dialysis. The minute you go on dialysis , your life expectancy is shortened.
I started with PD in Feb 2023 after 6 months it failed and put me in the hospital for 2 months and I was dying, that's what made me inactive. I've been on hemo since Sept 2023, I've had a few setbacks but after I stop Plavix Feb 9th I hope to start the reevaluation again. So far hemo is going well but I understand not everyone does and it could maybe not last. I've talked to a few people who have done hemo for 18+ years and others with a transplant for 20+ years. It's kind of a crapshoot with anything once you are end stage. Biggest issue for me is not being able to travel to visit my mom in MS or my daughter in ID. I live in OK. I tried once to visit my mom by finding a center close and it didn't work out.
I'll be going to KU Med in MO which is 3 hours away but the one my insurance will pay for. So I expect to stay near there for about a month. Luckily my employer is understanding and I can do FMLA. I love my job and the idea of going on SSDI makes me unhappy. Pretty much it's in Gods hands as to how this works out.
The meds I take were for other things before dialysis. There aren't any like the anti rejection meds.
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