Re: new to group 1 month ago

[Guest guest]

Here is a post I did on Remicade many months back--

Let me share this with you. Back in 2001-I was part of the ACCESS study, along with the clinical trial for Remicade. It was a double blind placebo, and I was lucky-- I got the medication. After my first infusion, my hands, which had become contracted into my thumbs being up against the palm of my hands, opened up for the first time in years. I had been fortunate in that the only way I could handle the pain caused by the contractures was to constantly massage the ligaments in the thumbs and my hands. (I'd also worked for a physical therapist whose speciality was hand rehabilitation, and he had shown me how to keep some of the use of the hands).

I was able to get the Remicade for the first 6 months of the clinical trial, then they withdrew the meds--- and at 6 wk intervals for that full year-- I flew too and from USC-LA for follow-up. My insurance company denied me the Remicade (as we know, FDA hasn't approved it for sarc) so they managed to keep me off it for the next year. Dr. Sharma sent them a letter explaining that I had tried all the others-- Imuran, Plaquenil, Methotrexate, Arava, Prednisone, Solu-medrol, and so many others-- and that the side effects of the prednisone had caused diabetes, rapid heart rate, depression, suicidal idiology, cataracts, hardening of the arteries and osteoarthritis- - the Imuran sent my liver enzymes through the roof, the Arava ate my gut up, and low and behold, the Methotrexate and Plaquenil had helped with my lung issues and my dementia issues, however, they weren't controlling all the problems-- I was still losing my

ability to walk, I was still having serious progression of the short term memory loss, and my body and bone pain was requiring more and more Opiate and narcotics drugs to control. Since I had a history of pain control drug addiction -- this was not a good thing. (Actually, it was drug dependency with the need to self-medicate as I wasn't being prescribed meds strong enough to control my pain issues.*see my story in the ARCHIVES.)

I've now been on the Remicade for the last 3 years, and although I am at maximum dose and 28 day intervals--it has helped tremendously with the bone and body pain-- my thinking and speech is much more clear, and only during this last couple of days prior to my next infusion-- does the lymph pain and inside the bone pain come back with such vengence that I may take a couple of Oramorph tablets over the next 2-3 days.

What I have noticed is that my immune system is not totally blown out-- and that is the beauty of Remicade. It is selective in taking down the TNF-a and TNF-b blood cells, instead of the entire immune system.

Yes, I did for the first time, have pneumonia in August. It was nasty-- very nasty. I do have less energy overall, as it seems the longer that I am on the Remicade it takes longer for me to bounce back after my infusions (a week now instead of 3 days or so) but then my pain and my functioning is so much higher for a couple of weeks-- as compared to not functioning and needing constant help prior to this medication. So yes, for me-- it was a good choice.

I don't know the statistics-- - but Remicade has been around for 10 yrs or so and 10's of thousands of people are on it for Rheumatoid Arthritis, Psoritic Arthritis and Chrohns. They have used it with kids with juvenile RA-- but I haven't spent my energy looking up what the success rate is. I have a group with over 530 members with various stages of sarcoidoisis- - and that is too much of a non-paying volunteer job.

When we suggest any form of treatment-- it's because we have experience, good and bad. Darlene, the other owner-- can tell you that her experience with Remicade was that it kicked up a histoplasmosis infection that landed her in the hospital for the better part of a year. Kim, another of our moderators-- had a severe allergic reaction--- and had to get off it. Debbie, another moderator, can tell you that she saw improvement in her pain levels after the first infusion, but built up an allergy to the Remicade-- and had to give up on it. Marla is having to undergo liver tests-- and whether it is the Remicade or the fact that they've waited so long to treat her NS that her liver is not happy with all the meds she's had to take-- unsuccessfully.

Others will tell you what I have-- that it's been a godsend.

One of the MD's that was with the group had great success with the Enbrel, but couldn't handle the added exhaustion and fatigue that comes with immunosuppressants.

Steroid treatment-- Prednisone and Solumedrol-- seem to add a tremendous amount of energy to our program, but the current research shows that when they take them away, not only does the sarc seem to relapse, but so does the severity.

We all have different stories to tell, it wasn't until I started the Remicade that my brain fog lifted, I knew I was in a brain fog, but had no idea how bad it was until I started the Remicade,

Hope this helps,

Tracie

NS Co-owner/moderator

-___

To: Neurosarcoidosis Sent: Tuesday, October 20, 2009 3:10:31 PMSubject: new to group 1 month ago

Hi everyone! I first signed up for Group about 1 month ago and waslooking for NS Dr in St. Louis MO area. No luck in this area so far.But have spent hours on this website. You are all great including co-owners-moderator s. You help improve our life's daily, not expecting any return. THANK YOU!! Marla, when you have time, I would like to talk to you about Remicaide. Did ins have a list of different RX to try first? I may need to travel to Indinia for a Dr knowledgable of NS. Pred helped a firsted in April. Added MXT about 2 months ago with not much change. As with most of us, I have a love-hate relationship with Pred. Take care and would like to communicate our shared info with all you regarding our experinces living with NS.HNew Member

[Guest guest]

How much pred is everyone on. I have been on 20 mg daily for over 3 years now?? Cellcept, Remicad, MXT, topaz none of it worked for me. At times my pred has spiked to 125 daily for a week or two and then back down to 60 and tapered from 60 down to 20, but never below 20....Bob To: Neurosarcoidosis Sent: Tue, October 20, 2009 3:10:30 PMSubject: new to group 1 month ago

Hi everyone! I first signed up for Group about 1 month ago and was

looking for NS Dr in St. Louis MO area. No luck in this area so far.

But have spent hours on this website. You are all great including co-owners-moderator s. You help improve our life's daily, not expecting any return. THANK YOU!! Marla, when you have time, I would like to talk to you about Remicaide. Did ins have a list of different RX to try first? I may need to travel to Indinia for a Dr knowledgable of NS. Pred helped a firsted in April. Added MXT about 2 months ago with not much change. As with most of us, I have a love-hate relationship with Pred. Take care and would like to communicate our shared info with all you regarding our experinces living with NS.

H

New Member

[Guest guest]



I am at 5 for prednisone. I also take mxt, and plaqanil mmmm good!!!! lol\Jackie

new to group 1 month ago

Hi everyone! I first signed up for Group about 1 month ago and waslooking for NS Dr in St. Louis MO area. No luck in this area so far.But have spent hours on this website. You are all great including co-owners-moderator s. You help improve our life's daily, not expecting any return. THANK YOU!! Marla, when you have time, I would like to talk to you about Remicaide. Did ins have a list of different RX to try first? I may need to travel to Indinia for a Dr knowledgable of NS. Pred helped a firsted in April. Added MXT about 2 months ago with not much change. As with most of us, I have a love-hate relationship with Pred. Take care and would like to communicate our shared info with all you regarding our experinces living with NS.HNew Member

[Guest guest]

I've been on between 10-80mg (average 30-40mg) for the past 3 years. Just got the ok for Remicad, I know what the PDR has as side effects but what is everyone's experience's.

thanks

Mitch

Sorry to piggy back my answer with your question Bob, Prednisone has so far been my least favorite of them all

new to group 1 month ago

Hi everyone! I first signed up for Group about 1 month ago and was

looking for NS Dr in St. Louis MO area. No luck in this area so far.

But have spent hours on this website. You are all great including co-owners-moderator s. You help improve our life's daily, not expecting any return. THANK YOU!! Marla, when you have time, I would like to talk to you about Remicaide. Did ins have a list of different RX to try first? I may need to travel to Indinia for a Dr knowledgable of NS. Pred helped a firsted in April. Added MXT about 2 months ago with not much change. As with most of us, I have a love-hate relationship with Pred. Take care and would like to communicate our shared info with all you regarding our experinces living with NS.

H

New Member

[Guest guest]

Hello, Bob;

I thank God that I have finally been lowered to 5.0 mg daily after being on from 20 to 60 mg per day! Your time is coming, too! Be blessed!!

Baltimore MD

To: Neurosarcoidosis Sent: Thu, November 12, 2009 9:37:06 PMSubject: Re: new to group 1 month ago

How much pred is everyone on. I have been on 20 mg daily for over 3 years now?? Cellcept, Remicad, MXT, topaz none of it worked for me. At times my pred has spiked to 125 daily for a week or two and then back down to 60 and tapered from 60 down to 20, but never below 20....Bob

From: chrislhorrell <chrislhorrell@ yahoo.com>To: Neurosarcoidosis@ yahoogroups. comSent: Tue, October 20, 2009 3:10:30 PMSubject: new to group 1 month ago

Hi everyone! I first signed up for Group about 1 month ago and waslooking for NS Dr in St. Louis MO area. No luck in this area so far.But have spent hours on this website. You are all great including co-owners-moderator s. You help improve our life's daily, not expecting any return. THANK YOU!! Marla, when you have time, I would like to talk to you about Remicaide. Did ins have a list of different RX to try first? I may need to travel to Indinia for a Dr knowledgable of NS. Pred helped a firsted in April. Added MXT about 2 months ago with not much change. As with most of us, I have a love-hate relationship with Pred. Take care and would like to communicate our shared info with all you regarding our experinces living with NS.HNew Member

[Guest guest]

I am currently on 20mg of pred every other day and 25mg of methotrexate once a week followed by 5mg of folic acid the next day and 1mg folic acid daily the rest of the week. Methotrexate has helped by decreasing the severity of my foot drop in my right foot enough that I no longer wear the AFO to correct the foot drop I only wear a lite weight ankle brace. Fortunately I have not had any side effects from the methotrexate. in Iowa

Subject: Re: new to group 1 month agoTo: Neurosarcoidosis Date: Thursday, November 12, 2009, 6:37 PM

How much pride is everyone on. I have been on 20 mg daily for over 3 years now?? Cellcept, Remicade, MXT, topaz none of it worked for me. At times my period has spiked to 125 daily for a week or two and then back down to 60 and tapered from 60 down to 20, but never below 20....Bob

To: Neurosarcoidosis Sent: Tue, October 20, 2009 3:10:30 PMSubject: new to group 1 month ago

Hi everyone! I first signed up for Group about 1 month ago and waslooking for NS Dr in St. Louis MO area. No luck in this area so far.But have spent hours on this website. You are all great including co-owners-moderator s. You help improve our life's daily, not expecting any return. THANK YOU!! Marla, when you have time, I would like to talk to you about Remicade. Did ins have a list of different RX to try first? I may need to travel to Indinia for a Dr knowledgeable of NS. Pred helped a firsted in April. Added MXT about 2 months ago with not much change. As with most of us, I have a love-hate relationship with Pred. Take care and would like to communicate our shared info with all you regarding our experiences living with NS.HNew Member

[Guest guest]

is on 5 mg of pred now, but there was a time when she was on 60 mg a day along with methotrexate...noe on cellcept.MattSubject: Re: new to group 1 month agoTo: Neurosarcoidosis Date: Friday, November 13, 2009, 12:21 AM



I am at 5 for prednisone. I also take mxt, and plaqanil mmmm good!!!! lol\Jackie

new to group 1 month ago

Hi everyone! I first signed up for Group about 1 month ago and waslooking for NS Dr in St. Louis MO area. No luck in this area so far.But have spent hours on this website. You are all great including co-owners-moderator s. You help improve our life's daily, not expecting any return. THANK YOU!! Marla, when you have time, I would like to talk to you about Remicaide. Did ins have a list of different RX to try first? I may need to travel to Indinia for a Dr knowledgable of NS. Pred helped a firsted in April. Added MXT about 2 months ago with not much change. As with most of us, I have a love-hate relationship with Pred. Take care and would like to communicate our shared info with all you regarding our experinces living with NS.HNew Member

[Guest guest]

I was started on 60 mg of prednisone and IV solumedrol 3 years ago. I had the IV once a month for 1 1/2 years and got off the IV and lowered prednisone dosage to 12 mg gradually. Two months ago my eye checkup revealed that my optic neuritis was starting to return so they had to give me another IV of solumedrol to nip it in the bud and increased my prednisone to 30 mg temporarily to ensure the optic neuritis is kept at bay.

Kind of discouraging when you try so long to get to a lower dosage only to have to increase. If I can get below 10 mg they believe I can get off the insulin which was my goal.

Kathy