Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 In a message dated 3/13/00 7:54:55 PM Eastern Standard Time, Rpolychondritisonelist writes: << I know that Dr. Trentham is conservative in his treatment (he believes in treating the disease with the least possible harm from meds) and if he has found new meds that meet his conservative requirements and they are still as effective as the more toxic ones it would great to know what they are. >> Hi : I will share any information that I get from Dr Trentham. If there are any meds that you want information on let me know < I have 3 brothers that are doctors so they can get most of the information that I need. When I said new meds from Dr Trentham I don't know if they are new ones that he is using or if they are new to me. My brother talked to him and when he described my problems Dr T said that he had some drugs that he thought I could try. My brother had not heard of them before as he is family practice. I do know that they are immune suppressants of some sort. I don't know id this is new news to you or not but doctor T did tell my brother that I should not take any of the cartilage building herbs that are out as it raises production of some enzymes that that trigger RP. I was also told not to take anything that increases immunity unless I check with doctor. The way I understand this disease is that our immune systems are overworking and we want it to slow down. Also, if you can think of any questions that you want me to ask Dr. T please feel free to let me know. I will write them all down. You can also call me if it is more convenient Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 In a message dated 3/13/00 7:54:55 PM Eastern Standard Time, Rpolychondritisonelist writes: << When you say fibrous tissue do you mean like scarring? Is it in your lungs >> The tissue they sampled was from my face as I grew a growth above the gums. Fibrous tissue is scar like. So is the granular. When they biopsy the site the composition of the mass contains certain types of tissue and the biopsy tells what type. Fibrous tissue is constant with RP. I'm glad that I don't have Wegners but I think that it is more treatable than advances RP. The fibrous tissue we make during flare ups is a major problem for us. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 In a message dated 3/13/00 7:54:55 PM Eastern Standard Time, Rpolychondritisonelist writes: << What is your specific med for cryoglobulinema? Does the doc think it is more- or less-threatening than RP? Does it affect what med you take for the RP? >> Cryoglobulinemia is a type of vasculitis. A lot of people with autoimmune disease have it. The are circulating immune comples that can be detected with a specific blood test. The blood test has to be handled very specifically to detect the presence of Cryogoblulines because they disappear when there is a drop in temp. The treatment for it is prednisone and the other immune suppressant drug. Cryo symptoms include rashes, including Raynauds, blood in the urine and also protein in the blood. The priamry concern with this is kidney damage. I have had blood in the unrine most of the time for several years but have not had any protein and so far no kidney damage. About oone third of the people with RP are supposed to have some sort of vasculitis and many of them have cryoglobulinemia. Like I said there is a test that your doctor can run if you think that you might have it. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 In a message dated 3/13/00 7:54:55 PM Eastern Standard Time, Rpolychondritisonelist writes: << I develope an eye and eyelid inflamationin rt, >> RP does cause several eye problems Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 In a message dated 03/13/2000 7:55:22 PM Eastern Standard Time, Rpolychondritisonelist writes: << hristy-I am having a hard time getting to the archives..I can get to the survey without signing on but can't find how to get " in " ...I hope I am a member LOL..Please help Janet >> Janet the survey is at the web site not onelist. it is the 2nd address under my name. Love and Gentle Hugs, Angie Yesterday will fade and tomorrow may not come. Lord, help me today http://www.geocities.com/acenneno_1999 http://rpolychondritis.tripod.com/index.html http://disabilities-us.com/shad/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 when I have eye flares I use pred forte drops and cyclogyl drops. Love and Gentle Hugs, Angie Yesterday will fade and tomorrow may not come. Lord, help me today http://www.geocities.com/acenneno_1999 http://rpolychondritis.tripod.com/index.html http://disabilities-us.com/shad/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2000 Report Share Posted March 14, 2000 Donna: Very interesting in that I had a very growth on my forehead (ok guy it wasn't like a horn or anything LOL) but it was like a small mole but clear. Kept hitting it when I combed my hair. My doc decided one day to take it off for me. Tried removing it but was a really wierd consistancy and was crunching when she tried to cut it. She did biopsy and lab couldn't classify. Went to a dermotologist friend and he removed it. They had to send it to a special pathology lab and it came back as a strange fibrous long time inflammatory lesion. No treatment or cancer noted. Docs were puzzled as to what it was. Well... guess I know now huh. Strange how things tend to fall into place as time goes on. Hope everyone has a great day! Take care, okerdo@... wrote: From: okerdo@... In a message dated 3/13/00 7:54:55 PM Eastern Standard Time, Rpolychondritisonelist writes: << When you say fibrous tissue do you mean like scarring? Is it in your lungs >> The tissue they sampled was from my face as I grew a growth above the gums. Fibrous tissue is scar like. So is the granular. When they biopsy the site the composition of the mass contains certain types of tissue and the biopsy tells what type. Fibrous tissue is constant with RP. I'm glad that I don't have Wegners but I think that it is more treatable than advances RP. The fibrous tissue we make during flare ups is a major problem for us. Donna hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2001 Report Share Posted January 28, 2001 Happy Birthday, Mabel. The big 80, Have a great day. Digest Number 492 > Quote Link to comment Share on other sites More sharing options...
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