Non medicare/remicade infusion question

[Dotneko]

Any Crohns/rhuematoid arthritis sufferers who get Remicade infusions - can you offer me some advice?
I am moving from MA and need to find a new health plan. I am getting lost in the choices and calling and being put on hold has just gotten old. I thought I would eliminate the middle man. If you currently get a Remicade infusion, could you share with me your medical plan and gastroenterologist? Oh, and where you get it done.
Thanks in advance - feel free to pm me.

[Catfishjeff]

I was on Remicade infusion for over 15 years in California. Every 5 weeks, 900 units. Here in TV my rheumatologist gave me the choice of going back on it or trying Xeljanz XR (tofacitinib) which is a pill taken once a day. The results have been identical and I’m no longer locked into living around an infusion schedule. The co-payments can be pretty big but there are ways to get it waved. I highly recommend Dr. Morris who is a rheumatologist with The Villages health system.

[Dotneko]

I was on Remicade infusion for over 15 years in California. Every 5 weeks, 900 units. Here in TV my rheumatologist gave me the choice of going back on it or trying Xeljanz XR (tofacitinib) which is a pill taken once a day. The results have been identical and I’m no longer locked into living around an infusion schedule. The co-payments can be pretty big but there are ways to get it waved. I highly recommend Dr. Morris who is a rheumatologist with The Villages health system.

Thanks - my current gastro wants to keep that as a reserve treatment. I have been on remicade since clinical trials in the 90s. If i go off it, and the other doesnt work, there is no guarantee going back on remicade will work again. So, trying to remain with what works for now.

[villagetinker]

OP, Florida SHINE (Google it) Florida Senior Health Information Network, will provide a lot of unbiased information. The villages health system can be very confusing, IF you want a primary care doctor in the villages health system you MUST have one of 3 or 4 ADVANTAGE plans as they do not accept medicare and supplemental plans. If you do not mind having a primary care doctor outside the VHCS, then you can use medicare and supplemental, IMHO this is what I suggest. You can still use specialist in VHCS with medicare. I believe there is a way to search the medicare system to find who handles the care you need and the specific drugs. Hope this helps.

[Dotneko]

OP, Florida SHINE (Google it) Florida Senior Health Information Network, will provide a lot of unbiased information. The villages health system can be very confusing, IF you want a primary care doctor in the villages health system you MUST have one of 3 or 4 ADVANTAGE plans as they do not accept medicare and supplemental plans. If you do not mind having a primary care doctor outside the VHCS, then you can use medicare and supplemental, IMHO this is what I suggest. You can still use specialist in VHCS with medicare. I believe there is a way to search the medicare system to find who handles the care you need and the specific drugs. Hope this helps.

Thanks, but isnt SHINE for over 65s? I am under the medicare age, so need to purchase some kind of insurance for the next 3 years.

[villagetinker]

Sorry, I made a bad assumption, I would still call SHINE they may still be able to help.

[KDW9966]

As I’m like you, not 65 yet, so the insurance plan I have is FL Blue Select Silver (HSA) 1442. It costs about $725.00 a month. My plan was to continue to see my specialist up north as all my family is there. However as the saying goes “ we plan, God laughs”. I also did remicade infusions in the late 90’s. But stopped when my crohns went into remission. Probably shouldn’t have.

So After a year of not being able to return to my doctors up north do to the pandemic, and having a my first major flair of Crohns in almost 15years ,the GI that I was referred to here in the Villages, was not able/willing to help me. After he did a colonoscopy! So I had to do my own research a find a new GI doctor.on So I’m going to try a GI in Tampa at USF. Have an appointment on at end of April! Praying relief of pain and return to better health.

[ithos]

Both Crohn's and Rheumatoid diseases are auto immune diseases. Most doctors only discuss expensive therapy, drug and surgery options. There is substantial research of reversing RA with diet.

Nutrition Interventions in Rheumatoid Arthritis: The Potential Use of Plant-Based Diets. A Review (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6746966/)

But less so on Crohn's but enough to be promising.

from American Gastroenterological Association (AGA)
DEFINE_ME (https://www.gastrojournal.org/article/S0016-5085(16)35281-7/pdf)

and from Kings College in London
What is the best diet for Crohn’s disease? - YouTube (https://www.youtube.com/watch?v=vtUnTX93Wlc)

[Villages Kahuna]

Be careful with the choice between and injection or infusion or an oral medication. The injection/infusion is paid by Medicare Part B, where your supplement has a maximum annual out-of-pocket limit. Oral medications are paid by Medicare Part D prescription drug plan which has no maximum annual limit!

Do the arithmetic before you make a quick and uninformed choice!

[DonnaNi4os]

I was on Remicade infusions in NJ, for complications from my lupus. Switched several times from Remicade to Orencia to Actemra. My rheumatologist here said I would be hard pressed to find anyone here to give me infusions. The good news that I have done fine without them. Good luck to you. I hope you find someone who will help you.

[NancyLee]

I was on Remicade infusion for over 15 years in California. Every 5 weeks, 900 units. Here in TV my rheumatologist gave me the choice of going back on it or trying Xeljanz XR (tofacitinib) which is a pill taken once a day. The results have been identical and I’m no longer locked into living around an infusion schedule. The co-payments can be pretty big but there are ways to get it waved. I highly recommend Dr. Morris who is a rheumatologist with The Villages health system.
I had a lot of trouble getting set up with a rheumatologist here in The Villages. I was trying to get my Evenity osteoporosis shots here instead of in Maryland. With Dr. Morris's system, be sure to fill out all the paper work first. You have to be in their system before they will accept any paper work from your previous doctor. If you are not in their system, your medical records from your previous doctor will be dumped. Also, make sure the doctor is familiar with the drug you want. My prescription was sent to the mail order Optum Rx system. My experience when down hill from there. Nobody appeared to know what was happening.
After spending more than a month pulling my hair out, I decided to try another rheumatology who was at least familiar with Evenity. Dr. Stephen Bookbinder is in Ocala. But, be sure to only send the referral to him and make sure the office receives it before sending any paperwork. Or, your paperwork will be dumped. Good luck!

[FredJacobs]

I am a user of Remicade since 2005. Your infusions are covered by Medicare Part B with the balance picked up by your insurance company. Be careful about your provider requesting that you purchase the Remicade vials from your pharmacy. If so, the Remicade comes under your prescription plan and they cost a bit over $1,000 per vial. However, if the doctor or infusion facility provides the Remicade, the cost of the Remicade is included as part of your medical treatment.

Finding a good Rheumatologist here is difficult. For Crohns, your Gastroenterologist could prescribe the Remicade. To my knowledge, the only location for these infusions is Florida Cancer Specialists with two locations here - one in Lady Lake and the other in the Brownwood section - both excellent facilities.

[Dotneko]

Sorry I was not clear - I am too young for medicare. Thats why i need non-medicare answers. Thanks

[johnojames]

Call me on Monday and I’ll share my experience. 732-742-9113
Had similar situation