I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: PrimeTimer 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?
-
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.
-
*
-
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.
-
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.
-
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.
-
*
-
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.
-
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"
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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..
-
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.
-
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.
-
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;
-
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.
-
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?
-
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.
-
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.
-
Shingles is a live vaccine. I don't think you can get it post xplant, so do it while you can.
-
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.
-
I agree PT in the UK I can still take EPO (i.s.o. Neorecormon it's now Eprex ) but still EPO and I can still give it myself, however iron has changed from Venofer which I could put through the machine into Interject which I have to go to hosp for. Completely weird I agree. Boo all the way back
Love and luck Cas
-
So far, so good with Micera. No side effects; HGB responding as expected; no wait at the clinic when I go in for puncturing.
-
Yes, I DID.
I keep asking my Primary Dr for the Shingles Vaccine, she somehow manages to put me off, again, and again.
My Wife had them around her left side just above the belt line, from spine to navel. She was miserable.
I would describe them a looking like some mid-evil curse.
Don't remember the name of the anti-viral they gave her, but I was very glad we had great health and pharmacy coverage then as our co-pay was only IIRC $15. Pharmacist told me they were charged something like $800 per pill !!!!!!! Times 4 a day. Damn Drug Companies.
I developed a 3 inch spot on the inside of my L calf. Dr claimed it was shingnles. No pain, just blisters and a mess so I kept it covered. Wasn't too long, healed. Lucky?
-
So far I have had no push back from the clinic for demanding EPO. Recall the Micera (I Believe) gave me severe headaches.
The neph had told me at two clinics he was getting good results from the Micera so I am surprised but thankfully he seems willing to treat us all as needed, not "per procedure".
-
Damn Drug Companies.
Time to buy stock.
-
And shares (?)
-
And shares (?)
Same thing.