Guest guest Posted November 30, 2001 Report Share Posted November 30, 2001 Some more information. First, I can't let it get back to my brother that I was actually concerned enough about him to spend two hours tonight searching the internet for help, he might think I really care. Just kidding!!! He went to Mayo's this summer (he goes every year) and they tried some type of treatment that sent him into a tailspin trying to control his condition. I'm not sure about the immunosuppresants, but I will ask him. He was diagnosed with dermatomyositis about 8 years ago and the prednisone helps, but right now he needs more help. He is a purplish, blue and his fingernails are blue. The skin around his fingers is peeling off and of course, he needs assistance with some simple day to day tasks such as washing his hair. I don't know how he is able but he keeps going to work. We were wondering about a possible genetic predisposition to this type of illness. My grandmother had myasthenia gravis and my mother had Guilliane Barre syndrome, which all seem to be related? We're looking for information or suggestions about who treats the condition aggresively. We would appreciate any assistance. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2001 Report Share Posted December 1, 2001 How old is your brother? Cari >From: shewolfe@... >Reply-To: OurMyositis >To: OurMyositis >Subject: My brother >Date: Sat, 01 Dec 2001 03:30:20 -0000 > >Some more information. First, I can't let it get back to my brother >that I was actually concerned enough about him to spend two hours >tonight searching the internet for help, he might think I really >care. Just kidding!!! He went to Mayo's this summer (he goes every >year) and they tried some type of treatment that sent him into a >tailspin trying to control his condition. I'm not sure about the >immunosuppresants, but I will ask him. He was diagnosed with >dermatomyositis about 8 years ago and the prednisone helps, but right >now he needs more help. He is a purplish, blue and his fingernails >are blue. The skin around his fingers is peeling off and of course, >he needs assistance with some simple day to day tasks such as washing >his hair. I don't know how he is able but he keeps going to work. >We were wondering about a possible genetic predisposition to this >type of illness. My grandmother had myasthenia gravis and my mother >had Guilliane Barre syndrome, which all seem to be related? We're >looking for information or suggestions about who treats the condition >aggresively. We would appreciate any assistance. Thanks. > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2001 Report Share Posted December 1, 2001 Hello.... I'm interested in finding out what treatment the Mayo Clinic used on your brother and he became so sick. Since I have PM I'm not really familiar with the finger thing... but I " ve heard someone on this list that has problems with there fingers... maybe it's Lynn. If so, she'll pop in and let you know about her fingers. The worst part of this disease is the ups and downs we all go through. We'll go through periods of medication adjustment to fend off a flair. As for myositis being gentic, I believe there working on trying to find this out but I haven't seen anything yet. But, there are families that have brother and sisters or other family members that have it. So, it's anybodies guess at this point whether it is or isn't. I did read an article that stated they do feel that genetics plays a role in our faulty immune system and that would predispose you to illness. It's too bad your brother can't take some time off and rest. When these flairs hit, rest is the key to getting back on the right track. I know this would be very difficult if he's still working. There are a number of things that can be given... Imuran, Methotrexate, IV Prednisolone, Cyclosporene, IV Cyclophosphamide (Cytoxan) IVIg (intravenous immunoglobulin),Cellcept. Just to name a few... some of these work well in combo but it's all trial and error to see what works on him and what doesn't. I do hope he's doing better and hopefully his doctor will put him on the right path. Take care, ~ Vicki ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2001 Report Share Posted December 1, 2001 Hi Vicki...yes, I have the finger problems...with DM the rash covers my knuckles, runs up my fingers, causes the skin to swell sometimes to the point of shiny-ness where it looks like it will split open. I get little blisters that do open, even on my palm. I have OA in both hands and RA in the left, and Raynauds Phenomenon...they go from red to deep purple...I use triamzalonome (I think that's how it's spelled), diprolene, elocon (I'll put anything on these puppies to get some relief!)...and a hand creme without alcohol. I started 60mgs of Prednisone this past Tuesday. Surprisingly, lots of the inflammation has subsided, except today it just flared up. right hand tingles really bad no matter what I do, rest or active. I haven't seen the new rheumy yet, so I don't have much to add yet! I'm also going to see a dermatologist. So, I'll keep you posted. Prior to Prednisone, I took Celebrex (still do,) it helped my knees and feet (I have OA) but never helped my hands. Now in concert with Pred, my hands feel better. Yahoooo!!!! Lynn --- anzavic@... wrote: > > > Hello.... I'm interested in finding out what > treatment the Mayo Clinic > used on your brother and he became so sick. > > Since I have PM I'm not really familiar with the > finger thing... but > I " ve heard someone on this list that has problems > with there fingers... > maybe it's Lynn. If so, she'll pop in and let you > know about her > fingers. > > The worst part of this disease is the ups and downs > we all go through. > We'll go through periods of medication adjustment to > fend off a flair. > > As for myositis being gentic, I believe there > working on trying to find > this out but I haven't seen anything yet. But, > there are families > that have brother and sisters or other family > members that have it. So, > it's anybodies guess at this point whether it is or > isn't. > I did read an article that stated they do feel that > genetics plays a > role in our faulty immune system and that would > predispose you to > illness. > > It's too bad your brother can't take some time off > and rest. When these > flairs hit, rest is the key to getting back on the > right track. I know > this would be very difficult if he's still working. > > > There are a number of things that can be given... > Imuran, Methotrexate, > IV Prednisolone, Cyclosporene, IV Cyclophosphamide > (Cytoxan) IVIg > (intravenous immunoglobulin),Cellcept. > Just to name a few... some of these work well in > combo but it's all > trial and error to see what works on him and what > doesn't. I do hope > he's doing better and hopefully his doctor will put > him on the right > path. Take care, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2001 Report Share Posted December 1, 2001 Wow Lynn, that's a new one on me. I didn't know you could have OA and RA together... See, I can learn something new.... the disease hasn't affected the old brain yet....lol Oh Ed, I forgot to add the RS....to that list. Are we having fun yet? ~ Vicki ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2001 Report Share Posted December 1, 2001 way too much fun ... not! ed > > Wow Lynn, that's a new one on me. I didn't know you could have OA and > RA together... See, I can learn something new.... the disease hasn't > affected the old brain yet....lol > > Oh Ed, I forgot to add the RS....to that list. Are we having fun yet? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2001 Report Share Posted December 1, 2001 Yup, I thought it strange, too...but that's what the report said. Have to get the actual x-rays, can't wait to see the new rheumy and ask if this can really be. So glad to be living now with the advancements made and research going on...I just learned my great-grandfather (dad's side) spent 7 years bedridden with RA. I'm glad I don't have the PA like my mom does, though...she really suffers with it. Lynn --- anzavic@... wrote: > > Wow Lynn, that's a new one on me. I didn't know you > could have OA and > RA together... See, I can learn something new.... > the disease hasn't > affected the old brain yet....lol > > Oh Ed, I forgot to add the RS....to that list. Are > we having fun yet? > > > Quote Link to comment Share on other sites More sharing options...
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