Guest guest Posted November 17, 2010 Report Share Posted November 17, 2010 , I had skin lesions biopsied and they came back as granulomas, not like my lymph node that came back as Sarcoid. But that's what Sarcoid does it forms granulomas, I have many skin lesions and they only settle down, they don't go away anymore. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) Just back from seeing the dermatologist - i don't have any active rashes at the moment (especially not on 40 mg pred!) but did have photos - she says it looks very very like sarcoid ... so there's some hope of getting a tissue biopsy / clearer dx once I get lesions again (which may be some time, as I only tend to get them in summer, and I'm likely to be on prednisolone for all of this summer, which we're just coming in to now in Australia). Cheers, ........................................................................................................ http://sutherland-studios.com.au Dummies author : http://tinyurl.com/CodesandCryptograms http://tinyurl.com/WordSearches ........................................................................................................ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2010 Report Share Posted November 17, 2010 , we have some photos of skin sarc on the NS website, although there are many manifestations. I have a weird rash just above both elbows. It appeared several years ago, has never itched or spread, just stays the same. I had just stopped Methotrexate when it started (docs felt I was in remission) & I was worried that this might be another visit from the sarc monster. My dermatologist biopsied it--came back indeterminate, possibly scar tissue. I didn't have any scars there. Since it didn't worsen, we just decided to watch it & it's never changed. The sarc guy I see at Indiana Univ. thinks it probably is sarc & so do I, but I'm not concerned about it. If it ever starts changing, I'll try another biopsy. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Wed, 17 Nov 2010 15:31:07 +1100> Subject: Skin lesions> > Just back from seeing the dermatologist - i don't have any active rashes at the moment (especially not on 40 mg pred!) but did have photos - she says it looks very very like sarcoid ... so there's some hope of getting a tissue biopsy / clearer dx once I get lesions again (which may be some time, as I only tend to get them in summer, and I'm likely to be on prednisolone for all of this summer, which we're just coming in to now in Australia).> > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members 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 November 17, 2010 Report Share Posted November 17, 2010 Hmmm, I've got some photos to upload, to the skin sarc section, but I'm not seeing the " Add Photos " link at all (have checked the FAQs etc) ... Rose, can you check my membership and see whether I'm allowed to upload photos to the group or not, please? What I get on my shins certainly looks similar to what the other gets too .... maybe it's something to do with the name, LOL Cheers, .................................................................................\ ........................ http://sutherland-studios.com.au Dummies author : http://tinyurl.com/CodesandCryptograms http://tinyurl.com/WordSearches .................................................................................\ ........................ > , we have some photos of skin sarc on the NS website, although there are many manifestations. I have a weird rash just above both elbows. It appeared several years ago, has never itched or spread, just stays the same. I had just stopped Methotrexate when it started (docs felt I was in remission) & I was worried that this might be another visit from the sarc monster. My dermatologist biopsied it--came back indeterminate, possibly scar tissue. I didn't have any scars there. Since it didn't worsen, we just decided to watch it & it's never changed. The sarc guy I see at Indiana Univ. thinks it probably is sarc & so do I, but I'm not concerned about it. If it ever starts changing, I'll try another biopsy. > > Ramblin' Rose > Moderator > > A merry heart is good medicine. Proverbs 17:22 > > > > > > > > > To: Neurosarcoidosis > > From: denise@... > > Date: Wed, 17 Nov 2010 15:31:07 +1100 > > Subject: Skin lesions > > > > Just back from seeing the dermatologist - i don't have any active rashes at the moment (especially not on 40 mg pred!) but did have photos - she says it looks very very like sarcoid ... so there's some hope of getting a tissue biopsy / clearer dx once I get lesions again (which may be some time, as I only tend to get them in summer, and I'm likely to be on prednisolone for all of this summer, which we're just coming in to now in Australia). > > > > Cheers, > > > > > > > > .................................................................................\ ........................ > > http://sutherland-studios.com.au > > > > Dummies author : > > http://tinyurl.com/CodesandCryptograms > > http://tinyurl.com/WordSearches > > > > .................................................................................\ ........................ > > > > > > > > ------------------------------------ > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > > > > > Message Archives:- > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > Members 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 November 17, 2010 Report Share Posted November 17, 2010 , I don't see any reason that you can't add photos, unless your browser is blocking it in some way. Are you able to view all the various albums in the Photos section? On my screen there is Add Photos & Create an Album on the upper right; if you don't have that I'll check with Darlene when her computer is working again. She's the computer guru of the bunch! Meanwhile, if you want to email the pics to me, I'll upload them for you. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Thu, 18 Nov 2010 18:18:48 +1100> Subject: Re: Skin lesions> > Hmmm, I've got some photos to upload, to the skin sarc section, but I'm not seeing the "Add Photos" link at all (have checked the FAQs etc) ... Rose, can you check my membership and see whether I'm allowed to upload photos to the group or not, please?> > What I get on my shins certainly looks similar to what the other gets too ... maybe it's something to do with the name, LOL > > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > > , we have some photos of skin sarc on the NS website, although there are many manifestations. I have a weird rash just above both elbows. It appeared several years ago, has never itched or spread, just stays the same. I had just stopped Methotrexate when it started (docs felt I was in remission) & I was worried that this might be another visit from the sarc monster. My dermatologist biopsied it--came back indeterminate, possibly scar tissue. I didn't have any scars there. Since it didn't worsen, we just decided to watch it & it's never changed. The sarc guy I see at Indiana Univ. thinks it probably is sarc & so do I, but I'm not concerned about it. If it ever starts changing, I'll try another biopsy.> > > > Ramblin' Rose> > Moderator> > > > A merry heart is good medicine. Proverbs 17:22> > > > > > > > > > > > > > > > > To: Neurosarcoidosis > > > > > Date: Wed, 17 Nov 2010 15:31:07 +1100> > > Subject: Skin lesions> > > > > > Just back from seeing the dermatologist - i don't have any active rashes at the moment (especially not on 40 mg pred!) but did have photos - she says it looks very very like sarcoid ... so there's some hope of getting a tissue biopsy / clearer dx once I get lesions again (which may be some time, as I only tend to get them in summer, and I'm likely to be on prednisolone for all of this summer, which we're just coming in to now in Australia).> > > > > > Cheers,> > > > > > > > > > > > .......................................................................................................> > > http://sutherland-studios.com.au> > > > > > Dummies author :> > > http://tinyurl.com/CodesandCryptograms> > > http://tinyurl.com/WordSearches> > > > > > .......................................................................................................> > > > > > > > > > > > ------------------------------------> > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > The Neurosarcoidosis Community> > > > > > > > > > > > Message Archives:-> > > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > > > Members 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 November 25, 2010 Report Share Posted November 25, 2010 My skin sarc wasn't on the skin exactly -- it was under it. Hard mounds like tumors -- some up to three inches across -- would form under the skin and be very easily seen from the outside. The lesions were painful, and I had them biopsied and they came back positive for sarc. With treatment they went away gradually and have come back from time to time. I've been through so many different kinds of treatments, so forgive me for forgetting which treatment goes with which manifestation, although I know I ought to be keeping better records. I think it was around the time I was getting remicade or methotrexate, but it could very well be steroids they gave me to clear it up. I do know I haven't had a flare-up since being on Imuran.Clear as mud? I have such a terrible memory. Just know that if you do get these things that they do clear up with treatment, so don't be shy about getting a biopsy. It could help.Hugs,To: neurosarcoidosis Sent: Thu, November 18, 2010 12:45:21 AMSubject: RE: Skin lesions , we have some photos of skin sarc on the NS website, although there are many manifestations. I have a weird rash just above both elbows. It appeared several years ago, has never itched or spread, just stays the same. I had just stopped Methotrexate when it started (docs felt I was in remission) & I was worried that this might be another visit from the sarc monster. My dermatologist biopsied it--came back indeterminate, possibly scar tissue. I didn't have any scars there. Since it didn't worsen, we just decided to watch it & it's never changed. The sarc guy I see at Indiana Univ. thinks it probably is sarc & so do I, but I'm not concerned about it. If it ever starts changing, I'll try another biopsy. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Wed, 17 Nov 2010 15:31:07 +1100> Subject: Skin lesions> > Just back from seeing the dermatologist - i don't have any active rashes at the moment (especially not on 40 mg pred!) but did have photos - she says it looks very very like sarcoid ... so there's some hope of getting a tissue biopsy / clearer dx once I get lesions again (which may be some time, as I only tend to get them in summer, and I'm likely to be on prednisolone for all of this summer, which we're just coming in to now in Australia).> > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members 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...
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