Guest guest Posted April 16, 2004 Report Share Posted April 16, 2004 Kay, Thanks for responding. I didn't know if you were still on the list. I was wondering how you are? How is your heart doing? That is too bad about your allergic reaction from the Remicade. I'm so frustrated with my new Rheum. But my IM Dr. retired and I need her to prescribe my pred. If I tell her I want one of the nodules biopsied she will think I have gone over the deep end. She was wanting to give me muscle relaxers and Lidocaine patches for my back pain and it has only responded to pred and MTX in the past. i don't think she takes me seriously. The nodules are on the inside of both shins and then one above the knee. I have 2 large hard nodules about marble sized in my left arm that I have had since I was a child. I don't know if they are anything. The granuloma in my lung was 3 mm and behind the sternum on the side. Good to hear from you Kay. Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2004 Report Share Posted April 16, 2004 Jane, I've dealt with nodules in and around my eyelids. One started out pea size and within weeks grew to the size of my thumb. Biopsy was positive for sarc. If you want more details, I'll be glad to provide them. It developed into a major ordeal. I continued to have small ones for a couple years. When I began Remicade, they just melted away after 3 treatments. I've had to discontinue the Remicade for a severe allergic reaction after the 4th one and they are starting to come back, but tiny so far. I am getting pencil eraser size whitish/red places on my arms and legs now. I'm sure they are skin sarc., but they really don't bother me yet. We'll see. Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Jane, Who cares if she thinks you're nuts......You and your health are more important than what this doctor thinks. If she won't biopsy it then go to a dermatologist and just ask...with authority...cuz, hey, it is your body! I've had those nodules and I still have them but I got my diagnosis before they developed. Other than the fact that my legs look horrid...they don't bother me. But if they did...I'd be up and about and demanding some biopsy or treatment. I know it's a bother but you've got to do the work on this one cuz doctors are just overloaded and we often get lost in the shuffle. hugs S.donstewblo@... wrote: I don't have a diagnosis of sarc at this time but I have developed hard pea sized nodules on my legs. Could these be granulomas and could I have one biopsied to see if it shows sarc? I have a routine appt. with my Rheum in 2 weeks. I do have a granuloma in my lung but thought it might be easier to biopsy one in the leg. I think the Rheum thinks I am nuts but if I get nowhere with her maybe I should ask for a pulmonologist since my xray definitely showed old granulomatous disease.Jane ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Jane, Who cares if she thinks you're nuts......You and your health are more important than what this doctor thinks. If she won't biopsy it then go to a dermatologist and just ask...with authority...cuz, hey, it is your body! I've had those nodules and I still have them but I got my diagnosis before they developed. Other than the fact that my legs look horrid...they don't bother me. But if they did...I'd be up and about and demanding some biopsy or treatment. I know it's a bother but you've got to do the work on this one cuz doctors are just overloaded and we often get lost in the shuffle. hugs S.donstewblo@... wrote: I don't have a diagnosis of sarc at this time but I have developed hard pea sized nodules on my legs. Could these be granulomas and could I have one biopsied to see if it shows sarc? I have a routine appt. with my Rheum in 2 weeks. I do have a granuloma in my lung but thought it might be easier to biopsy one in the leg. I think the Rheum thinks I am nuts but if I get nowhere with her maybe I should ask for a pulmonologist since my xray definitely showed old granulomatous disease.Jane ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Kay, is the Remicade supposed to help with all types of sarcoidosis? Does it do anything for the fatigue & muscle weakness? I'm trying to get into the study at IU. I talked to Sheryl Lynch back in December, but I was on Trental, another antiTNF drug, which didn't do anything. She said I would have to be off the Trental for 3 months before being considered for the Remicade study. I called her back last week to tell her I had been off it for over 3 months and she said that she thought ever taking it would exclude me from the trial, and that she must have told me wrong in December. However, she said that she would check with the doctors to be sure. I haven't heard back from her. If I can't be in the study, I'm going to ask my neuro about it & see if my insurance will cover it. I will still have the hospital insurance, for the same premium, until October. Then, if I'm still unable to work, I don't know if I would qualify for Medicaid or keep my insurance at a much higher cost. Do you know if Medicaid covers Remicade for sarc? Re: skin nodules. I'm getting these weird painful bumps just on my left hand. It started out last year with what looked a plantar wart on the tip of my middle finger. I used OTC wart treatment & TCA (used for venereal warts), and it just kept getting bigger & more painful, until I had trouble typing & other daily activities. I saw a dermatologist, who froze it 3 times without response & finally cut out a big divot in my finger. My insurance won't cover treatment for this kind of wart and I've had to pay about $400 out of pocket. Now the thing is starting back! I also have a similar lesion on my first finger that started out as a small bump with a hole in the center; It's getting bigger & more painful and a couple of weeks ago another one appeared in the palm of my hand! I can't afford the dermatologist if they are warts, but I'm a little concerned that they might be sarc. Has anyone had lesions like this? They are flesh-colored and tender to touch. The one on my palm is about the size of a BB, the others have gotten bigger. Kay, I hope to see you again sometime. Did you enjoy your retreat awhile back? Rose Re: Skin Nodules Jane, I've dealt with nodules in and around my eyelids. One started out pea size and within weeks grew to the size of my thumb. Biopsy was positive for sarc. If you want more details, I'll be glad to provide them. It developed into a major ordeal. I continued to have small ones for a couple years. When I began Remicade, they just melted away after 3 treatments. I've had to discontinue the Remicade for a severe allergic reaction after the 4th one and they are starting to come back, but tiny so far. I am getting pencil eraser size whitish/red places on my arms and legs now. I'm sure they are skin sarc., but they really don't bother me yet. We'll see. Kay ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.