Re: Help with cost of Remicade

[Guest guest]

Ruth, thanks for sharing this information.

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Help with cost of RemicadeDate: Sun, 12 Aug 2007 05:35:27 -0000

I am not sure if anyone has posted this information about Remicade. I hope this will be helpful. My Insurance turned me down for Remicade 18 months ago. I wrote Centocor, the company who makes it. They have a patient assistance program which I applied to and was approved for. For once being broke was helpful Cenocor's Remicade Patient Assistance Program phone number is . The mailing address is Remicade Patient Assistance ProgramP.O. Box 221709Charlotte, NC 28222-1709My insurance covers the cost of the infusion, however all the cost of Remicade has been paid for Cenocor. A Patient Counselor calls me once a month the ask if everything went well with my last infusion. They even call me to remind me a couple of days before my next infusion...and hey I need all the help I can get with that!! Of course I had to sign that they can use my case history. And I have to reapply every six months. My doctors have been appreciative when I have shared this information with them...the eye specialist in Indy even sent me a handwritten thank you note ...even more surprising I could read it.Ruth>> I have a question.> > If you don't have insurance, how much does a months supply of remicade,> prednisone, etc. cost?>

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[Guest guest]

Ruth, thanks for sharing this information.

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Help with cost of RemicadeDate: Sun, 12 Aug 2007 05:35:27 -0000

I am not sure if anyone has posted this information about Remicade. I hope this will be helpful. My Insurance turned me down for Remicade 18 months ago. I wrote Centocor, the company who makes it. They have a patient assistance program which I applied to and was approved for. For once being broke was helpful Cenocor's Remicade Patient Assistance Program phone number is . The mailing address is Remicade Patient Assistance ProgramP.O. Box 221709Charlotte, NC 28222-1709My insurance covers the cost of the infusion, however all the cost of Remicade has been paid for Cenocor. A Patient Counselor calls me once a month the ask if everything went well with my last infusion. They even call me to remind me a couple of days before my next infusion...and hey I need all the help I can get with that!! Of course I had to sign that they can use my case history. And I have to reapply every six months. My doctors have been appreciative when I have shared this information with them...the eye specialist in Indy even sent me a handwritten thank you note ...even more surprising I could read it.Ruth>> I have a question.> > If you don't have insurance, how much does a months supply of remicade,> prednisone, etc. cost?>

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[Guest guest]

Ruth, thank you!I don't know if we would qualify.. (we feel poor but I get the feeling that because we are still living on one income, we are still not poor enough for these programs- ) but who knows, maybe I could talk them into it. (Remicade looks very promising and I do have substantial - and worstening neuropathy, and reasons why I may not be able to take steroids.)

Before I got sick, my wife and I had decent income.. we were both computer programmers and doing fairly well, relative to many.. but now we are struggling and without getting better, I don't see a loght at the end of the tunnel. But $4000 a pop.. that is ridiculous..

How long does one have to keep on taking it.. Do one or two treatments cure anything?We'll see...

[Guest guest]

Ruth, thank you!I don't know if we would qualify.. (we feel poor but I get the feeling that because we are still living on one income, we are still not poor enough for these programs- ) but who knows, maybe I could talk them into it. (Remicade looks very promising and I do have substantial - and worstening neuropathy, and reasons why I may not be able to take steroids.)

Before I got sick, my wife and I had decent income.. we were both computer programmers and doing fairly well, relative to many.. but now we are struggling and without getting better, I don't see a loght at the end of the tunnel. But $4000 a pop.. that is ridiculous..

How long does one have to keep on taking it.. Do one or two treatments cure anything?We'll see...

[Guest guest]

>.the eye specialist in Indy even sent me a handwritten thank you note ...even more surprising I could read it.You know, I've also had this major deterioration in eyesight when my illness flares up.. I don't take a lot of supplements but there are two I take pretty consistantly and they are N-acetylcysteine and l-carnosine..

Both seem to have improved my eyesight.. The carnosine definitely improves your eyesight.. they also make (expensive) carnosine eye drops that have been proven to recerse some of the effects of cataracts....

Oral carnosine is a glycation inhibitor.. Glycation is the reaction of flesh with sugars to produce advanced glycation end products (AGEs) which results in things like nearsightedness and your connective tissue stiffens with age.. Its also responsible for a lot of hypertension..

Carnosine definteley reduces inflammatory biomarkers.. My C-reactive protein shot up a few years ago and was in the stratosphere for a long time, but the NAC and the carnosine has gotten it down into the normal range..

And getting out of the mold - that was the biggie...

[Guest guest]

How long does one have to keep on taking it.. Do one or two treatments cure anything?Currently, there is no documented cure for sarcoidosis. Remicade can help with many of the symptoms, but like any drug, it has its own set of side effects, including allergic reactions in at least 10% of those who take it. It's a long-term course of treatment, with the dosage & intervals adjusted for each individual. If it's stopped, a rebound effect is common, with symptoms worse than before the Remicade was started. Some people with sarc do go into remission, even for years. But many of those folks have a resurgence of the disease, in the same organ systems or in new ones. I have been declared in remission for the past 6 months, and haven't been on any treatment for active sarc for over one year. It's believed that I am now dealing with the residual damage. I had originally been on Pred & Imuran for over two years; tapered off due to the usual assortment of Pred effects, then took oral Methotrexate for about 18 mos. I was coming up on the maximum total MTX dosage recommended before a liver biopsy, and after discussing it with my docs, I stopped the MTX. My symptoms didn't worsen & my ACE level was 22 6 months after the last dose of MTX. I still feel like I'm waiting for a big combat boot to fall on me, but I also know that any of the treatments for sarc carry risk, especially with long-term use. And like a pharmacologist once told me, the more powerful the drug, the more serious the potential complications & side effects.

My understanding is that you haven't yet been diagnosed with sarc; am I mistaken about that? Are you near a major medical center? If you can get to Cincinnati, Dr. Baughman will see you, talk with you about a plan for diagnosis & treatment & work with your local docs. The first time I saw him, I had no health insurance because I had forgotten to pay my COBRA premium. I kept waiting for a good-size bill, and after a few months I called his office & was told that he had waived the fee. Obviously, I can't guarantee that for anyone, but I'm sure that they would try to work out something. I'm also sure that there are other doctors or clinics that will work with you.

Another issue with Remicade is that it hasn't been approved by the FDA for treatment of sarcoidosis, although the work is in the pipeline. So most insurance companies & Medicare won't pay for it to treat sarc. Some on this list have stated that their doctor used rheumatoid arthritis for coding purposes, or even sarcoid-induced arthritis. Obviously, this is a touchy area for docs, who can't afford to be charged with fraud.

But I think you need to get some kind of diagnosis before you worry too much about the cost of Remicade. Let us know where you live & we can try to give you information about doctors who are knowledgeable about sarc.

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

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