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Author Topic: No More EPO From Fresenius?  (Read 11234 times)
PrimeTimer
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« on: August 24, 2015, 01:20:48 PM »

My husband does home-hemo and was trained to give himself EPO injections. He was told today by Fresenius that they are no longer going to use EPO and instead, will be giving him a new drug. Anyone being told the same thing and know what this new drug is? If so, have you noticed any side effects or changes to your hemoglobin (Hb) count? 
« Last Edit: August 24, 2015, 01:22:49 PM by PrimeTimer » Logged

Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
justagirl2325
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« Reply #1 on: August 24, 2015, 01:46:16 PM »

It might be what we use here in Canada - Aranesp.   

A quote I found on the Multiple Myeloma Research Foundation website:

There are several different types of erythropoietins. Procrit® and Epogen® are two brands of epoetin alfa. Aranesp® (darbepoetin alfa) is another type of erythropoietin. The major difference between Procrit/Epogen and Aranesp is that Aranesp is given less often than Procrit. Otherwise, all three agents work equally well in the treatment of anemia.

My husband receives Aranesp during dialysis once a month.
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noahvale
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« Reply #2 on: August 24, 2015, 04:27:21 PM »

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« Last Edit: September 23, 2015, 08:54:22 AM by noahvale » Logged
PrimeTimer
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« Reply #3 on: August 24, 2015, 06:04:16 PM »

justagirl2325 and noahvale:  Thank you very much for replying! Either his nurse doesn't yet know what they (Fresenius) are replacing the EPO with or, she was too busy to go over it with him on the phone. She said they will go over it with him later this week at his monthly appt with his Neph. In addition to having ESRD, my husband has Diabetes and is very good about giving himself insulin injections. Whatever they are replacing the EPO with, hopefully it will be something that he can continue injecting himself with (opposed to me having to administer it via his venous line on the cycler). As soon as we know more, I will post it here. Meanwhile, I will read up on Aranesp.
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
casper2636
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« Reply #4 on: August 24, 2015, 06:34:29 PM »

I just switched from Davita (they were giving me Aranesp) to Fresenius (they didn't want continue Aranesp - I'm allergic to Epogen) so they give me Marsella. My be that's what they (Fresenius) prefer? It seems to be doing the trick.
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PrimeTimer
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« Reply #5 on: August 24, 2015, 07:43:10 PM »

I just switched from Davita (they were giving me Aranesp) to Fresenius (they didn't want continue Aranesp - I'm allergic to Epogen) so they give me Marsella. My be that's what they (Fresenius) prefer? It seems to be doing the trick.
casper2636: Thanks for telling me about the Marsella. I will read up on that one, too. I was just reading about Aranesp and saw that it can be dangerous if a person's Hb target is 11 or higher. My husband's Hb is usually between 11-12 (he and his Neph like it that way) so the warning I read about Aranesp concerns me. I'm also concerned that Aranesp cannot be adjusted for "quick results" like EPO can. Guess we will have to wait and see what his Neph says but as with everything else, changes to anything are always a little stressful, especially when it involves medications.   
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
noahvale
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« Reply #6 on: August 24, 2015, 08:21:42 PM »

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« Last Edit: September 23, 2015, 08:53:42 AM by noahvale » Logged
Vt Big Rig
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« Reply #7 on: August 25, 2015, 05:08:56 AM »

We were also told (from Fresenius) that there would be no more EPO and they were changing to Micera. I do not recall why but I have monthly clinic coming up and will find out.
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
Simon Dog
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« Reply #8 on: August 25, 2015, 07:00:21 AM »

I just heard from my RN.   She told me that in-center is already using Micera, but no word on home patients yet.  She also mentioned this was a 1-2 time/month injection, and done in center for home patients (which I assume is for inventory control of the drug and not for medical reasons).

Micera appears to be a new generation, longer half life, ESA that has been around for a while (longer overseas).   It looks promising, however, I have a bit of skepticism since Fresenius has a habit of making decisions based on financial factors, so I want to learn how this drug's history of side effects compares to EPO.

I've emailed the head hematology for one of the big Boston teaching hospitals to find out if my reaction to a change should be WTF? or "thank you"

Quote
I do not recall why

They will no doubt tell you it is for the convenience of fewer injections, however, I bet the real reason is cost.   CVS list the price of a one ml vial of EPO at close to $300.
« Last Edit: August 25, 2015, 07:02:39 AM by Simon Dog » Logged
justagirl2325
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« Reply #9 on: August 25, 2015, 07:22:38 AM »

This won't mean anything to you Americans, but just to demonstrate the difference for drug costs in countries...

Aranesp is the one and only drug in this process that is given to us by our local hospital (which runs the home-hemo program...we don't have private dialysis centres like Fresenius or Davita).   We get a box of four injections at a time a four month supply.

My sister works at a pharmacy and says if we had to buy it the cost would be $4,000.
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Alex C.
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« Reply #10 on: August 25, 2015, 01:09:40 PM »

I've been on Micera for about a month now-only need it once every 2 weeks. Probably it is a cost-saver for in-center treatments, since only a nurse is allowed to administer drugs.
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PrimeTimer
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« Reply #11 on: August 27, 2015, 08:54:43 PM »

Thanks, everyone for the replies. Please keep us posted as to what your Fresenius clinic is doing or if you were switched from EPO to Aranesp or Micera and any side-effects or even benefits for that matter that you would like people to know about.

Meanwhile, husband's Neph at Fresenius told him they are still "testing" out Micera in their centers so they sent him home with his usual EPO (for self-injections). Gee, are they using in-center patients as guinea pigs?? They said if/when they switch him to the Micera, he will have to go to the clinic for the injection 1-2 times a month, depending on his Hemoglobin level. We are hoping he will get to stay on EPO so he can continue injecting himself (for the convenience) and the biggie, so that his dose can be quickly adjusted when needed to increase/decrease his Hb level, opposed to waiting for the apparently slower-acting Micera to kick in.
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Simon Dog
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« Reply #12 on: August 28, 2015, 06:00:11 AM »

The hot shot hematologist I spoke to advised he has no objections to Micera.  He sent me a paper from tin International Journal of Nephrology and Renovascular disease that quotes a study showing Micrea has a much smaller risk of AVF complications.   Just when I was excited about that, I read the info from the next study it summarized that showed just the opposite.   I'm convinced the difference was likely random but have long forgotten how to do a proper T test.

I suspect the reason for in-center injections is that Micera comes in 9 different pre-filled syringe dosages.   It would be wasting a very expensive drug giving patients an inventory of the various doses.

A more sensible solution would be to give the patient an injection at his/her monthly.   If an injection is needed in 2 weeks, that will be known at the time of the monthly (based on the lab cycle), so the clinic could be given one syringe with that particular dose to take home for the next dose.     I do know there are no medical contraindications to home administration of Micera.

If I get switched to Micera, I will be pushing my MD for this protocol.   He's very good at listening to patients, so I would not be surprised at a positive outcome.  The trick will be getting it pushed up the food chain and made FMC policy.
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Vt Big Rig
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« Reply #13 on: August 28, 2015, 08:10:09 AM »

I just came form Clinic and spoke with neph about this. He runs two different clinics and has all patients on the other clinic on Micera and all the albumin labs have gone up so he is very happy with it.

Your iron level must be a certain amount before you start so I was given an iron short and will probably start next month on the Micera.
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
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« Reply #14 on: September 06, 2015, 10:47:17 AM »

Our clinic (London UK)  dis a switch from NeoRormon to Aranesp.  As mentioned Aranesp has a different absorbtion rate, so in theiory is 'cheaper'.

However, I reacted badly after taking it, headache, palpitations and chest pain.  After taking 2 doses I called my doctor.. He's keeping me on NeoRecormon and has made a note in my records.
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PrimeTimer
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« Reply #15 on: September 06, 2015, 07:37:59 PM »

Our clinic (London UK)  dis a switch from NeoRormon to Aranesp.  As mentioned Aranesp has a different absorbtion rate, so in theiory is 'cheaper'.

However, I reacted badly after taking it, headache, palpitations and chest pain.  After taking 2 doses I called my doctor.. He's keeping me on NeoRecormon and has made a note in my records.

Thanks for sharing your experience. My husband is still on EPO but if/when they change things on him, hopefully he will not suffer side effects. If he does, I don't think his Neph would hesitate to put him back on the EPO. Well, we hope anyway..
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
micron
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« Reply #16 on: November 04, 2015, 12:04:30 PM »

Husband got switched to mircera last week at clinic.  Been having body aches and tiredness since then, they are listed as side effects, but can't be sure it's what is causing them since we recently had a cold.
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PrimeTimer
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« Reply #17 on: November 05, 2015, 11:29:33 PM »

Husband got switched to mircera last week at clinic.  Been having body aches and tiredness since then, they are listed as side effects, but can't be sure it's what is causing them since we recently had a cold.
Hopefully as the cold bug eases up on him so will the aches and tiredness. I'd keep tabs tho just in case so that he can report these to his Neph. Sometimes side effects from meds go away after time but sometimes not. Keep tabs to see if it eases up or gets worse and then you will have something to show the Neph. My husband is still on Epo and I hope they continue giving him Epo. He's been thru so much lately that I'd hate for him to experience any side effects of a new drug while he's still trying to recover from the last crisis.
« Last Edit: November 05, 2015, 11:30:53 PM by PrimeTimer » Logged

Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Vt Big Rig
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« Reply #18 on: November 06, 2015, 04:35:15 AM »

I got my first shot of Micera last  Monday.

I started having really bad spasmodic pain in head, on the right side, Tuesday afternoon. I also have a bad case of the shingles  :( but that started before the shot.  Two doctors do not believe the head pain is related to the shingles. One does.

But I have said I do not want any more micera and they have ordered me more EPO. :yahoo;

I can't say I am any more tired or achy than usual ...... but the pain of the shingles may be hiding that!!! :urcrazy; :urcrazy;
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
Simon Dog
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« Reply #19 on: November 06, 2015, 10:59:27 AM »

Micera is just PEGged epo - epo bound to polyethylene gyclol to increase the half life.  While this wasa obviously done for cost reasons, I did consult with a hemo specialist who told me he thought it was a good idea even absent cost considerations.
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okarol
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« Reply #20 on: November 06, 2015, 09:19:41 PM »

I got my first shot of Micera last  Monday.

I started having really bad spasmodic pain in head, on the right side, Tuesday afternoon. I also have a bad case of the shingles  :( but that started before the shot.  Two doctors do not believe the head pain is related to the shingles. One does.

But I have said I do not want any more micera and they have ordered me more EPO. :yahoo;

I can't say I am any more tired or achy than usual ...... but the pain of the shingles may be hiding that!!! :urcrazy; :urcrazy;

Have you gotten the shingles vaccine?
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
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She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
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« Reply #21 on: November 06, 2015, 09:43:12 PM »

Jenna's Fresenius center also said they will change to Mircera soon.
Mircera (made by Roche) was not available in the US due to Roche violating Amgen patents for their drugs Epogen/Aranesp. The patent has now expired.
Mircera belongs to a category of drugs called Continuous Erythropoeitin Receptor Activators or CERA because it continuously interacts with the EPO receptor producing longer lasting effects. Only 1-2 monthly injections of Mircera have similar results to 2-3 times weekly injections of Epogen.

Common side effects of Mircera include stuffy nose, sore throat, cough, headache, muscle aches or spasms, back pain, pain in the arms or legs, nausea, vomiting, diarrhea, constipation, injection site reactions (itching, redness, bruising, or swelling), high or low blood pressure, or urinary tract infections. Adverse reaction rates did not importantly differ between patients receiving Mircera or another ESA.

Common side effects of Procrit/Epogen may include: cold symptoms such as stuffy nose, sneezing, cough, sore throat; joint pain, bone pain; muscle pain, muscle spasm; dizziness, depression, mild headache; weight loss; sleep problems (insomnia); nausea, vomiting, trouble swallowing; or pain or tenderness where you injected the medication.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Vt Big Rig
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« Reply #22 on: November 07, 2015, 06:25:26 AM »

I got my first shot of Micera last  Monday.

I started having really bad spasmodic pain in head, on the right side, Tuesday afternoon. I also have a bad case of the shingles  :( but that started before the shot.  Two doctors do not believe the head pain is related to the shingles. One does.

But I have said I do not want any more micera and they have ordered me more EPO. :yahoo;

I can't say I am any more tired or achy than usual ...... but the pain of the shingles may be hiding that!!! :urcrazy; :urcrazy;

Have you gotten the shingles vaccine?

Yes, I DID.
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
Simon Dog
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« Reply #23 on: November 07, 2015, 07:41:56 AM »

Shingles is a live vaccine.   I don't think you can get it post xplant, so do it while you can.
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PrimeTimer
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« Reply #24 on: January 11, 2016, 06:17:25 PM »

Husband had his first Micera shot late last month. He hasn't experienced any side effects that I'm aware of, I asked, he says no. He goes for a 2nd Micera shot and iron at the end of this week. Despite having had to give himself EPO injections 1x a week, it was easier on him because now he has to leave work to drive over to the clinic 1-2 times a month so that the nurse can give him Micera shots. Guess it saves Fresenius money but not the patient (time and travel). It also seems to be slow-acting compared to EPO...last month (after Micera) his hemoglobin was 9.2 and this month only 9.8. Boo. 
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
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