What is out there for insurance coverage for envarsus xr for HEART transplants - even Veloxis shines me on. I am about out, Mass General has no clue what to do, and that is that. POW
No, I'm in a relatively big city in Ohio. My next shipment just said it sent, so I should get it this week. Yay! I think it's my online pharmacy that's having trouble keeping it stocked. 🤷♀️
Pleased to hear that some good benefits come to those in Uniform! Do you get Mycophenolic Rx'd as well - that is pricey but it is on most Formularies. POW
I'm coming up for Medicare and it is not covered as you know. I called Veloxis and they said they will continue to kidney free medication but not heart patients. I'm not sure what to do, I'll get my coordinator involved but that may be a waste of time. Looks like I gotta do some charity searching here.
If you are pre-Medicare age, you can get it for free, Veloxis gives out an 'insurance' card with the necessary Rx numbers for the pharmacy. Just go to their website. If your team uses a 'house' pharmacy, get him/her to get the card. Specialty pharmacies always carry it. I've been using it free of charge for 4 years at least. I always have a month in reserve in case of some problem. if I can swing this, I do it with all my meds.
Montreal, I think I've found the work-around. I got my Medicare Part B to declare both Envarsus XR and mycophenloic as 'medical necessities' as the transplant was, also. With this, I by-pass Part D medicare; it appears that CVS Specialty will deliver both, as they had done with Envarsus XR for two years. Another 'discovery' - Wallmart Specialty was totally aware of this, said they deal with such matters all the time, and were far, far more efficient as well as effective. "Send your Rx here; we'll get it out next day." How about that? Best in bureaucracy. POW
Excellent. I will have to make sure of this before I sign up. I talked about tacro (which is not expensive with Medicare) and my team said under no circumstances was I to change from Envarsus. Now at the risk of being computer slang illiterate, what the hell does POW stand for.
HaHA! Peter Owen Whitmer. Where did you have your transplant - mine at MGH? I changed from Tacro to Envarsus because I couldn't stand the nausea, equilibrium issues, and shaking hands. It is not 'fine' now, but after two years, I can sleep pretty well, and use the computer without every word being a misspelling. Walking a straight line is still something that people in the immediate area place bets on. Best, POW
Ha, a bit the same here. I had my transplant at Montefiore in da Bronx. Might know him, Dr. D'Alessandro, he moved to Mass. General, now head of transplant/LVAD department-2015 I think. I'm pretty sure we changed over to Envarsus because of the hand tremors, which now has adventured into other parts. (my jaw for one) Well, after years, my shakes have become worse but with Envarsus my levels are steady. Much better than with Tacro. I hear you with typing, at times my handwriting is worthless (getting better) and yes, I find myself banging off the walls when walking. Right on Brother! I was put on Propranolol to help with the shakes which helped at first, now I'm at 180 mg which is way too high. Better living through chemistry, right. It sure bangs my brain about.
Interesting - Dr. DAN, as he is known at MGH, also did mine. He's a good guy, told me funny stories about his Peleton and trying to row crew at Cornell. A patient in my room, after Dr. DAN had visited, complained snarkily about his $3k suit. I gave some feedback about how many people start med school, v how many end up as cardio surgeons. He might have understood.
I do the Envarsus stumble constantly, never know which day it is really going to whack me, leave me with anxiety, nausea, and apathetic with a fuzzy brain. The s.e.'s are one thing that was clearly underplayed or overlooked when the pre-op stuff was being told me. And when I complain at the rare face to face meetings, they say, 'oh, yes.' I finally got them to watch me try and walk a straight line in the hall. They looked, and said, 'oh, yes.' And life goes on. POW
Interesting discussion @montreal and @Sawbuu23 - I have yet to switch to envarsus because I worry about the transition - how did you do it? Also - I did not realize AEs were the reason my writing has worsened! I have always had a hard to read signature but now my writing is very shaky! The walking too / shaky is the word! The brain fuzzies worse at certain times during the day for sure. Most likely when conc is the highest!
Karin, I changed from Tacrolimus to Envarsus XR, as the former side effects nearly bowled me over with high anxiety and a constant wave of nausea. Now it is a little better - going on 2+ years - always shaky, less nausea, but a WORLD away from what I expected. Also - NO prior warning about the S.E.'s. Perhaps that is what to expect at a Teaching Hospital (MGH) with annual staff turnover. Keep the faith - as Winston Churchill said, "If you find yourself walking through Hell ... keep on walking." Peter
Karin, I can't remember the transition from Tacro to Envarsus so it must not have been that bad but then again, I have to say I 'suffer' from neuropathy/migraines/ tremors/vertigo which now come as one, so I probably wouldn't noticed anyway. The thing is that my numbers have been steady, hardly any change once my body acclimated to it in the beginning. I also like the idea of it being more steady than tacro. The extended release make it smoother than tacro which has peaks and needs to be taken twice a day. Read up on it and go for it, it's geared for kidney. I do 'keep on walking' though. Hey Swede. Much of my folk come from Sweden. They were one tight group when they came over. @Sawbuu23 . I can remember when not only did I have hand tremors but also leg jerks. That scared me, I didn't dare go on a bar stool; that was danger. Did you ever have those?
Monreal, Leg jerks, sure thing. But then, I was a kicker, so perhaps my past is haunting me. More startling are the sudden and sometimes prolonged shooting pain in my toes. I have been Dx'd with Peripheral Neuropathy, but not sure if it is from Envarsus or secondary to a staph infection that messed with my R leg. I am curious about your Vertigo - was it part of the Envarsus deal? I have equilibrium issues, and my Neuro guy chalked it up to Peripheral Neuro - I am not buying it. Best in Symptoms and in Spirit. POW
That Neuro is taking the easy way out. The one thing I have come to learn is that Dr.'s make **** up if they don't have a good answer. Not from Neuropathy, it's 2 different issues. I looked it up and infections can cause P Neuropathy but never assume anything though google (It was from Mayo Clinic-good source). I've had neuropathy for years, way before my transplant. Incredible pain, almost like phantom pain. I've been to at least a dozen doctors about it, like I said, all different answers. I heard diabetes which is common to trauma such as surgery to the real diagnosis-idiopathic disease. It means they don't know. My equilibrium issues have become bad also; I could write a book of jokes about it. I attribute a lot of it from my surgeries. especially from anesthesia, whoever wrote that anesthesia goes away after 2 weeks has read too many medical books. Months is better said. One Dr. I went to for tremors wanted to give me Botox shots for the hands, I assume a nerve or muscle? Insurance said no. My wife works in a children's hospital, they use it all of the time. Maybe something you can look into. You too @Karin, you never know. Later on Kicker.
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I'm so sorry. I hope you figure it out soon! I keep having trouble getting my 4mg Envarsus in stock as a kidney transplant recipient.
shelby, are you in a rural area? I have to wait on a retail CVS; now CVS Specialty is giving me the "it's not on our formulary" line. Argghhh POW
No, I'm in a relatively big city in Ohio. My next shipment just said it sent, so I should get it this week. Yay! I think it's my online pharmacy that's having trouble keeping it stocked. 🤷♀️
I am glad you're getting it delivered. Is it covered by MediCare or private insurance? That's the rub for me; MediCsre won't touch it. POW
Mine is Express Scripts from Tricare. My spouse is active duty Air Force.
Pleased to hear that some good benefits come to those in Uniform! Do you get Mycophenolic Rx'd as well - that is pricey but it is on most Formularies. POW
I'm coming up for Medicare and it is not covered as you know. I called Veloxis and they said they will continue to kidney free medication but not heart patients. I'm not sure what to do, I'll get my coordinator involved but that may be a waste of time. Looks like I gotta do some charity searching here.
If you are pre-Medicare age, you can get it for free, Veloxis gives out an 'insurance' card with the necessary Rx numbers for the pharmacy. Just go to their website. If your team uses a 'house' pharmacy, get him/her to get the card. Specialty pharmacies always carry it. I've been using it free of charge for 4 years at least. I always have a month in reserve in case of some problem. if I can swing this, I do it with all my meds.
Montreal, I think I've found the work-around. I got my Medicare Part B to declare both Envarsus XR and mycophenloic as 'medical necessities' as the transplant was, also. With this, I by-pass Part D medicare; it appears that CVS Specialty will deliver both, as they had done with Envarsus XR for two years. Another 'discovery' - Wallmart Specialty was totally aware of this, said they deal with such matters all the time, and were far, far more efficient as well as effective. "Send your Rx here; we'll get it out next day." How about that? Best in bureaucracy. POW
Excellent. I will have to make sure of this before I sign up. I talked about tacro (which is not expensive with Medicare) and my team said under no circumstances was I to change from Envarsus. Now at the risk of being computer slang illiterate, what the hell does POW stand for.
HaHA! Peter Owen Whitmer. Where did you have your transplant - mine at MGH? I changed from Tacro to Envarsus because I couldn't stand the nausea, equilibrium issues, and shaking hands. It is not 'fine' now, but after two years, I can sleep pretty well, and use the computer without every word being a misspelling. Walking a straight line is still something that people in the immediate area place bets on. Best, POW
Ha, a bit the same here. I had my transplant at Montefiore in da Bronx. Might know him, Dr. D'Alessandro, he moved to Mass. General, now head of transplant/LVAD department-2015 I think. I'm pretty sure we changed over to Envarsus because of the hand tremors, which now has adventured into other parts. (my jaw for one) Well, after years, my shakes have become worse but with Envarsus my levels are steady. Much better than with Tacro. I hear you with typing, at times my handwriting is worthless (getting better) and yes, I find myself banging off the walls when walking. Right on Brother! I was put on Propranolol to help with the shakes which helped at first, now I'm at 180 mg which is way too high. Better living through chemistry, right. It sure bangs my brain about.
Interesting - Dr. DAN, as he is known at MGH, also did mine. He's a good guy, told me funny stories about his Peleton and trying to row crew at Cornell. A patient in my room, after Dr. DAN had visited, complained snarkily about his $3k suit. I gave some feedback about how many people start med school, v how many end up as cardio surgeons. He might have understood.
I do the Envarsus stumble constantly, never know which day it is really going to whack me, leave me with anxiety, nausea, and apathetic with a fuzzy brain. The s.e.'s are one thing that was clearly underplayed or overlooked when the pre-op stuff was being told me. And when I complain at the rare face to face meetings, they say, 'oh, yes.' I finally got them to watch me try and walk a straight line in the hall. They looked, and said, 'oh, yes.' And life goes on. POW
Transplant Patient
Interesting discussion @montreal and @Sawbuu23 - I have yet to switch to envarsus because I worry about the transition - how did you do it? Also - I did not realize AEs were the reason my writing has worsened! I have always had a hard to read signature but now my writing is very shaky! The walking too / shaky is the word! The brain fuzzies worse at certain times during the day for sure. Most likely when conc is the highest!
Karin, I changed from Tacrolimus to Envarsus XR, as the former side effects nearly bowled me over with high anxiety and a constant wave of nausea. Now it is a little better - going on 2+ years - always shaky, less nausea, but a WORLD away from what I expected. Also - NO prior warning about the S.E.'s. Perhaps that is what to expect at a Teaching Hospital (MGH) with annual staff turnover. Keep the faith - as Winston Churchill said, "If you find yourself walking through Hell ... keep on walking." Peter
Karin, I can't remember the transition from Tacro to Envarsus so it must not have been that bad but then again, I have to say I 'suffer' from neuropathy/migraines/ tremors/vertigo which now come as one, so I probably wouldn't noticed anyway. The thing is that my numbers have been steady, hardly any change once my body acclimated to it in the beginning. I also like the idea of it being more steady than tacro. The extended release make it smoother than tacro which has peaks and needs to be taken twice a day. Read up on it and go for it, it's geared for kidney. I do 'keep on walking' though. Hey Swede. Much of my folk come from Sweden. They were one tight group when they came over. @Sawbuu23 . I can remember when not only did I have hand tremors but also leg jerks. That scared me, I didn't dare go on a bar stool; that was danger. Did you ever have those?
Monreal, Leg jerks, sure thing. But then, I was a kicker, so perhaps my past is haunting me. More startling are the sudden and sometimes prolonged shooting pain in my toes. I have been Dx'd with Peripheral Neuropathy, but not sure if it is from Envarsus or secondary to a staph infection that messed with my R leg. I am curious about your Vertigo - was it part of the Envarsus deal? I have equilibrium issues, and my Neuro guy chalked it up to Peripheral Neuro - I am not buying it. Best in Symptoms and in Spirit. POW
That Neuro is taking the easy way out. The one thing I have come to learn is that Dr.'s make **** up if they don't have a good answer. Not from Neuropathy, it's 2 different issues. I looked it up and infections can cause P Neuropathy but never assume anything though google (It was from Mayo Clinic-good source). I've had neuropathy for years, way before my transplant. Incredible pain, almost like phantom pain. I've been to at least a dozen doctors about it, like I said, all different answers. I heard diabetes which is common to trauma such as surgery to the real diagnosis-idiopathic disease. It means they don't know. My equilibrium issues have become bad also; I could write a book of jokes about it. I attribute a lot of it from my surgeries. especially from anesthesia, whoever wrote that anesthesia goes away after 2 weeks has read too many medical books. Months is better said. One Dr. I went to for tremors wanted to give me Botox shots for the hands, I assume a nerve or muscle? Insurance said no. My wife works in a children's hospital, they use it all of the time. Maybe something you can look into. You too @Karin, you never know. Later on Kicker.
Back to original post, did part B work out fine.?