Re: Remicade and arthritis

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Tracie, My neurologist admits that he doesn't know a lot about Sarcoid. However, he diagnosed me right off the bat after the first round of tests. Then he sent me to see a specialist and from there I was sent from one to another. All saying it couldn't be Sarcoid. I was diagnosed as I have said before with several different things before they finally biopsied the nerves and found the sarcoid. Mine was thought to be strictly peripheral neurosarcoidosis. They didn't think about the Asthma that was diagnosed out of the blue. But, my lungs only show one or two granulomas on x-ray and that can be normal. Only now are they considering that perhaps the sarcoid is in the bronchioles. I am lucky though that it hasn't progressed in the lungs. I have an exacerbation about once a year of the Asthma and we manage to get that under control. I also had shingles in the facial nerve and developed meningitis. The side of my face has been numb for the last fifteen years

but they attributed that to shingles. I have numbness across the left side of my midriff. all in all though it has remained that type of thing. The MRI of my back showed lots of problems with the disks. They did surgery on my neck thinking that would help my arms and legs. (it didn't) Of course they have told me that I have severe degenerative arthritis in my knees, hips, hands, back and neck. I don't have rheunatoid Arthritis. The specialist that I am seeing isn't doing what my neuroligist thinks he should be doing. He keeps messing around with prednisone. I have been on prednisone for a few years. (My neurologist prescribed Neurontin as high as 3600 mg a day to no avail. I now take Lyrica. He also gave me Immuran, IVIG, Plasmapheresis, and something else that I cannot remember. This was all while they thought I had something else.) Now my neuro thinks that at the very least I should be on something to help cover my immune system if the prednisone is going to be

messed with. He also thinks that if we are going to a specialist we should be doing some other things such as Methotrexate and something else he mentioned. I brought up the Remicade to him. He had not heard of using that for sarcoid. He is sending me to see a rheumatologist now. I am also having problems with my vision so he is having me see a neuroopthalmalogist. I do drink a lot. I too have diabetes now and if my electrolytes get out of whack I end up in the hospital. I have a really hard time keeping my potassium up. I know this is a long email, but I appreciate your input. I don't know how you know so much about this stuff. The first thing it took from me was my memory. Thanks, Barb tiodaat@... wrote: In a

message dated 7/5/06 7:05:03 PM Pacific Daylight Time, statpdq@... writes: When you receive Remicade for Arthritis is it because the Sarcoid is producing symptoms of Rheumatoid Arthritis or Degenerative Arthritis? Do you know if anyone is using Human Growth Hormone? What is the best combination of drugs for neurosarcoid that is affecting the peripheral nerves? I am having more and more difficulting wallking.Thanks,Barb,I'm on Remicade because of my pulmonary sarcoidosis. I'm in Stage III pulm sarc-- and am developing pulmonary hypertension. I have only 48% functioning lung--and yeah, my sats are at 95% +-- which is up from 84% without the Remicade.The best part is that it has helped with the Sarcoid Induced Arthritis--which is in the full length of my spine, neck, and extremities. My thumbs had been "frozen" to the palms of my hands, and after the first infusion-- within one hour, I was able to straighten my thumbs out! Fortunately, I'd never stopped massaging the ligaments for my thumbs so that they could still function. Remicade is FDA approved for Rheumatoid Arthritis and for Psoriatic Arthritis--with over 750,000 people on it. It's been around for 7 or 8 yrs now. The sarcoidosis produces granulomas that are like calcium deposits in the joints and ligaments-- so we end up with both degenerative effects along with

rheumatic like symptoms. It's like having bone spurs at every nerve point. and many of us have been diagnosed with bone spurs- only to find out that it is sarc granulomas. (My carpal tunnel was not ct- it is sarcoidosis in my wrists.) With ct- my neurologist decided not to do surgery as the granulomas wouldn't have responded and releasing the tendon there in my wrist wasn't going to help.For the neuropathy-- many of us are on Neurontin. It's good to start with a low dose and work up-- as to start off high too many people give up on it before they find out what helps. Plaquenil, Methotrexate, Imuran, Motrin and Flexeril are all good at helping with the inflammation processes. I'm on a combination of Plaquenil for lung inflammation, Methotrexate for immunosuppression and to make sure i don't develop antibodies against the Remicade-- it also helps with the systemic inflammation. The Remicade has helped with my lungs,

eyes, and bone and arthritic pains. I use 800mg of Motrin up to 3x day, and Flexeril 10mg at night--so that the hard muscles of my back (which is a sign of NS and for years was dx'd as fibromyalgia) can relax a bit so that I can sleep for a while anyhow. I also take Effexor XR so that both the depression as well as the seratonin levels stay level-- and that helps keep my pain down. As I've said many times-- watching my blood sugar (I am diabetic- thank you prednisone) and watching my water intake--drink more!-- has made a huge difference in my neuropathy.MSM powder (there's a bunch of stuff in the ARCHIVES) will explain this stuff. But it's a natural mineral we should have--and has been engineered out of our foods- and what a difference it makes. Hope this helps,TracieNS Co-owner//moderator

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