Re: Remicade and the moderators

[Guest guest]

LOL! No the moderators are all on disability, and none of is working-- for anyone. We are just like you --- looking for answers for a rotten disability that has taken our careers, our health and our independence.

Are we encouraging the use of BRM's-- Biological Response Modifiers--ENbrel, Humira and Remicade.

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.

One of my biggest concerns is that so much in the way of autoimmune disease seems to be related to diets deficienct in nutrients and minerals that I wonder how much better we'd be if we went to diets like the SCHWARZBEIN PRINCIPAL where we eat more raw fruits and veges-- organics, and get away from all the processed junk we've been fed, would we see these diseases become less prevalent and self-sabotaging.

I truly believe that nutrition is going to be a key factor. As long as we add back in just the 3 primary nutrients into our soils, as long as we continue to use the same fields years after year to plant the same crops, as long as fertilizers and pesticides and high fructose corn syrups and the main ingredients in the foods we consume are chemicals to preserve them for longer shelf-life--- how sick are we going to become.

For too many of us, it is bed and wheelchair bound. I'm 51, have been fighting pulmonary and ocular sarcoidosis since 1991, and had it progress to systemic sarcoidosis with severe sarc-induced arthritis and dementias in 1999--- and I've found a way to get a few more years out of this body. Back in 2001-- they gave me 5-7 years with the pulmonary sarc and pulmonary hypertension and fibrosis of my lungs-- and I'm starting my 8th year. I know i wouldn't have had this time at all if I hadn't chosen the path I'm on-- but in no way do I expect any of you to take the same path-- it's your choice. In with your kids-- I thank God daily that I don't have to make this choice for a child.

We are not doctors, we have alot of medical RN's in our group, and a couple of docs-- that are too sick themselves to participate-- and they came here because the moderators and owners were one of the first groups that was actively doing research into this ugly beast. You can take the info we share-- and carry it into your MD's office--and talk it over.

As far as contacting members offline-- be careful-- yes, these are nasty drugs-- and we've had some major misinformation given from people offline that was more life threatening than anything we share here.

In our welcome letter-- we state that we are not Doctors--- and any info shared has to be discussed with your MD. Our LINKS and ARCHIVES give you alot of info to take with you to the guys with the degrees.

Sincerely,

Tracie

NS Co-owner/moderator

pain question> > > My son (10 in a few weeks) may have sarcoid... still waiting on definitive dx. He has > recently developed a new type of pain. On his arm (inside part) from elbow to wrist, he > feels real pain. He thinks he has burnt himslef (he hasn't) and needed pain meds last > night just for that.> > He says, "when did I burn my arm?" There is no discoloration. Does this sound like > sarcoid pain to anyone. I hate when he develops a new symptom. Most of the sarcoid > stuff has been neurological -- dizziness, loss of balance, loss of arm strength... he does > have pains but a lot are associated with his arthritis. (or headaches) This is definitely skin > pain. Thanks for any answers,>

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