Re: Remicade for the treatment of Neurosarcoidosis

[Guest guest]

,

I have been on Remicade for the last 18 months. I too have found that I can think more clearly, and communicate more effectively than prior to the Remicade. At that point, I had lost all ability to problem solve, multi-task (still have problems with that)- but at least now with the Remicade, I can follow through and complete small projects.

I've also had fantastic results with getting relief from the horrendous "inside" the bone pain that I was having. My sarcoidosis-induced arthritis in my spine and hips is so much better, and I find that my breathing is improved.

I have been able to get off my pain medications for the most part (I still need anti-inflammatories and muscle relaxants) but at least I'm not living off of OxyContin.

I have the added benefit of being able to be off my oxygen (I was on it 24/7 prior to the Remicade) and at this point, we are no longer looking at the need for me to have lung transplants.

Like you, I had been on high-dose prednisone and IV solumedrol-- and it caused diabetes, weight gain (40# in one month) as well as hardening of the arteries and severe clinical depression. My physcians tried me on lmuran, and my liver pitched a fit. Then we went to Arava, and my gut couldn't handle that. From there we tried Plaquenil, Methotrexate, and a variety of other immunosuppresants.

I ended up being prescribed Remicade, and my insurance did not want to cover it. I was able to enroll in a Stage II clinical trial down at USC LA, and I did get the Remicade. After the very first infusion, my thumbs (which had been frozen into the palm of my hands for almost a year prior) straightened out and I regained the use of my thumbs. The pain in my spine, my hips, my hands and feet was gone!

Like you, my insurance company tried to deny covering my Remicade, and the alternative would have been to put me on a lung transplant list.

Fortunately, since we had tried so many of the other immunosuppresants without results-- or at best minimal results-- (I am now on Plaquenil, Methotrexate and Remicade) the insurance company found it in their best interest to cover my Remicade. It is truly less expensive and so much more an enhancement to the Quality of my Life that I totally understand your frustration in having your insurance carrier try to deny covering it.

Do they realize that if they discontinue your treatment, that your sarcoidosis will come back, and the next flare will more than likely disable you? To stop treatment is paramount to issuing you a life in a wheelchair, with the need for progressive longterm care just for the Activiities of Daily Living. (ADL's.)

Most Sincerely,

Tracie Feldhaus

Magalia, CA See AOL's top rated recipes and easy ways to stay in shape for winter.

[Guest guest]

,

I have been on Remicade for the last 18 months. I too have found that I can think more clearly, and communicate more effectively than prior to the Remicade. At that point, I had lost all ability to problem solve, multi-task (still have problems with that)- but at least now with the Remicade, I can follow through and complete small projects.

I've also had fantastic results with getting relief from the horrendous "inside" the bone pain that I was having. My sarcoidosis-induced arthritis in my spine and hips is so much better, and I find that my breathing is improved.

I have been able to get off my pain medications for the most part (I still need anti-inflammatories and muscle relaxants) but at least I'm not living off of OxyContin.

I have the added benefit of being able to be off my oxygen (I was on it 24/7 prior to the Remicade) and at this point, we are no longer looking at the need for me to have lung transplants.

Like you, I had been on high-dose prednisone and IV solumedrol-- and it caused diabetes, weight gain (40# in one month) as well as hardening of the arteries and severe clinical depression. My physcians tried me on lmuran, and my liver pitched a fit. Then we went to Arava, and my gut couldn't handle that. From there we tried Plaquenil, Methotrexate, and a variety of other immunosuppresants.

I ended up being prescribed Remicade, and my insurance did not want to cover it. I was able to enroll in a Stage II clinical trial down at USC LA, and I did get the Remicade. After the very first infusion, my thumbs (which had been frozen into the palm of my hands for almost a year prior) straightened out and I regained the use of my thumbs. The pain in my spine, my hips, my hands and feet was gone!

Like you, my insurance company tried to deny covering my Remicade, and the alternative would have been to put me on a lung transplant list.

Fortunately, since we had tried so many of the other immunosuppresants without results-- or at best minimal results-- (I am now on Plaquenil, Methotrexate and Remicade) the insurance company found it in their best interest to cover my Remicade. It is truly less expensive and so much more an enhancement to the Quality of my Life that I totally understand your frustration in having your insurance carrier try to deny covering it.

Do they realize that if they discontinue your treatment, that your sarcoidosis will come back, and the next flare will more than likely disable you? To stop treatment is paramount to issuing you a life in a wheelchair, with the need for progressive longterm care just for the Activiities of Daily Living. (ADL's.)

Most Sincerely,

Tracie Feldhaus

Magalia, CA See AOL's top rated recipes and easy ways to stay in shape for winter.

[Guest guest]

,

Go to our LINKS and ARCHIVES AND PULL UP THE ARTICLES ON REMICADE AND SARC. They will be under the name of INFLIZIMABE ALSO.

The other issue is this:

You are on it now, to take it away, is to be totally negligent. Your body will REALLY start attacking itself, and you will be back where you started-- if not further disabled.

This is not a "stop and go" drug. (Unless you can't tolerate it.) To get the infusions every 28 days, and increase the dosage )I'm at the top- 10mg/kg-- so I get a 900mg infusion each 28 days. You have to be on a 2nd immunosupressant so you don't build antibodies against the Remicade, and Folic Acid- so you don't develop pernicious anemia.

The fact that you lose your vision when you aren't on it-- should also be mentioned. Have your MD write a letter that states he's had you on (whatever meds) and that they've not been effective. He needs also to document how well you are doing with it-- and that they will be negligent to discontinue it.

Print out the articles and case studies in the LINKS-- and add them to your appeal letter.

Sincerely,

Tracie

NS Co-owner/moderatorSee AOL's top rated recipes and easy ways to stay in shape for winter.

[Guest guest]

,

Go to our LINKS and ARCHIVES AND PULL UP THE ARTICLES ON REMICADE AND SARC. They will be under the name of INFLIZIMABE ALSO.

The other issue is this:

You are on it now, to take it away, is to be totally negligent. Your body will REALLY start attacking itself, and you will be back where you started-- if not further disabled.

This is not a "stop and go" drug. (Unless you can't tolerate it.) To get the infusions every 28 days, and increase the dosage )I'm at the top- 10mg/kg-- so I get a 900mg infusion each 28 days. You have to be on a 2nd immunosupressant so you don't build antibodies against the Remicade, and Folic Acid- so you don't develop pernicious anemia.

The fact that you lose your vision when you aren't on it-- should also be mentioned. Have your MD write a letter that states he's had you on (whatever meds) and that they've not been effective. He needs also to document how well you are doing with it-- and that they will be negligent to discontinue it.

Print out the articles and case studies in the LINKS-- and add them to your appeal letter.

Sincerely,

Tracie

NS Co-owner/moderatorSee AOL's top rated recipes and easy ways to stay in shape for winter.