Guest guest Posted March 16, 2001 Report Share Posted March 16, 2001 Thanks Carmela, Is it haelping your joints? Do you feel better while taking it? My thing about the sulfur I remember someone saying we were not suppose to take it and why but I don't remember who it was???? Maybe I just dreamed it????lol Somedays I think I have lost my mind.lol Thanks for the input. Take care, Love Lu My homeopath recommended taking MSM just recently, but his assistant gave it to me in powder form to mix with water, it has a vile taste; so I returned the unused portion and am now taking the tablets (which is slightly more expensive) which also has Boswellia in it. So far, so good. Apparently both have anti-inflammatory properties and keeps cartilage in good condition, but does not build it up like chondroitin. I also take a whole bunch of other stuff including flax seed oil, Infla-Zyme, Wild Salmon oil and acidophilus. But with any natural supplements, it takes time to kick in, at least a couple of weeks, taken on a regular basis. hope this helps... please take care luv Carmela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2001 Report Share Posted March 16, 2001 Lu, Babe, you didn't dream it. I read it also but don't remember who, where or when. Re: Re: question on sulfur/LuThanks Carmela, Is it haelping your joints? Do you feel better while taking it? My thing about the sulfur I remember someone saying we were not suppose to take it and why but I don't remember who it was???? Maybe I just dreamed it????lol Somedays I think I have lost my mind.lol Thanks for the input. Take care, Love Lu My homeopath recommended taking MSM just recently, but his assistant gave it to me in powder form to mix with water, it has a vile taste; so I returned the unused portion and am now taking the tablets (which is slightly more expensive) which also has Boswellia in it. So far, so good. Apparently both have anti-inflammatory properties and keeps cartilage in good condition, but does not build it up like chondroitin. I also take a whole bunch of other stuff including flax seed oil, Infla-Zyme, Wild Salmon oil and acidophilus. But with any natural supplements, it takes time to kick in, at least a couple of weeks, taken on a regular basis. hope this helps... please take care luv Carmela DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Thank you Jo, I thought so but I wasn't sure, there is a reason we are not suppose to take sulfur based drugs but I'm not sure what it is yet. Lu Lu, Babe, you didn't dream it. I read it also but don't remember who, where or when. Re: Re: question on sulfur/Lu Thanks Carmela, Is it haelping your joints? Do you feel better while taking it? My thing about the sulfur I remember someone saying we were not suppose to take it and why but I don't remember who it was???? Maybe I just dreamed it????lol Somedays I think I have lost my mind.lol Thanks for the input. Take care, Love Lu My homeopath recommended taking MSM just recently, but his assistant gave it to me in powder form to mix with water, it has a vile taste; so I returned the unused portion and am now taking the tablets (which is slightly more expensive) which also has Boswellia in it. So far, so good. Apparently both have anti-inflammatory properties and keeps cartilage in good condition, but does not build it up like chondroitin. I also take a whole bunch of other stuff including flax seed oil, Infla-Zyme, Wild Salmon oil and acidophilus. But with any natural supplements, it takes time to kick in, at least a couple of weeks, taken on a regular basis. hope this helps... please take care luv Carmela DISCLAIMER!! WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 10:04:27 AM Central Standard Time, Lu1953@... writes: << I thought so but I wasn't sure, there is a reason we are not suppose to take sulfur based drugs but I'm not sure what it is yet. Lu >> I was told " several " times by all my specialists that people like us (autoimmune) " Should Never " take any form of " Sulfa based drugs, " due to the fact that the drug has some type of bad reaction with the sun and sunlight and people with RP, Lupus, and other forms of these disorder can become even 100% more sun sensitive on the " Sulfa Drugs. " Dr Trenthem is one the who actually even went as far as writing in my Medical Records. P. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 8:12:46 AM Pacific Standard Time, Idigflower@... writes: << I was told " several " times by all my specialists that people like us (autoimmune) " Should Never " take any form of " Sulfa based drugs, " due to the fact that the drug has some type of bad reaction with the sun and sunlight and people with RP, Lupus, and other forms of these disorder can become even 100% more sun sensitive on the " Sulfa Drugs. " Dr Trenthem is one the who actually even went as far as writing in my Medical Records. P. >> , thanks for the info. I was given Septra last week for a kidney infection and couldn't take it. Always have been able to before. Strange huh? C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 10:24:36 AM Central Standard Time, RCColloran@... writes: << , thanks for the info. I was given Septra last week for a kidney infection and couldn't take it. Always have been able to before. Strange huh? C >> This might even sound more " weird " but thay all also said even being by a window " in your own home " if on the Sulfa based drugs can frail the RP! wow Huh? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 8:44:31 AM Pacific Standard Time, Idigflower@... writes: << This might even sound more " weird " but thay all also said even being by a window " in your own home " if on the Sulfa based drugs can frail the RP! wow Huh? >> Geez, , what are they trying to do to me??????LOL All my windows were open all weekend!!! I guess my RP is really " frailed " . LOL No wonder I feel like crap. C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 8:44:31 AM Pacific Standard Time, Idigflower@... writes: << This might even sound more " weird " but thay all also said even being by a window " in your own home " if on the Sulfa based drugs can frail the RP! wow Huh? >> Geez, , what are they trying to do to me??????LOL All my windows were open all weekend!!! I guess my RP is really " frailed " . LOL No wonder I feel like crap. C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 8:44:31 AM Pacific Standard Time, Idigflower@... writes: << This might even sound more " weird " but thay all also said even being by a window " in your own home " if on the Sulfa based drugs can frail the RP! wow Huh? >> Geez, , what are they trying to do to me??????LOL All my windows were open all weekend!!! I guess my RP is really " frailed " . LOL No wonder I feel like crap. C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 10:53:44 AM Central Standard Time, RCColloran@... writes: << " frailed " . LOL No wonder I feel like crap. >> LOL Meant to say Flair! not " Frailed " LOL Ops sorry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 10:53:44 AM Central Standard Time, RCColloran@... writes: << " frailed " . LOL No wonder I feel like crap. >> LOL Meant to say Flair! not " Frailed " LOL Ops sorry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 9:04:05 AM Pacific Standard Time, Idigflower@... writes: << LOL Meant to say Flair! not " Frailed " LOL >> , lOL Good thing we all understand each other HUh?? Damn RP!! , do you have fibro or any other med condition, I know you told me once, but my mind CRS. LOL You were talking about your muscles and maybe being the pred. I have fibro, and my muscles hurt all the time. It is so hard to figure out which is which. I'm currently on 20 mg of pred (have been for months at 20) higher before that and 50mg of Imuran. Going to try to decrease the pred this week slowly. C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 11:18:55 AM Central Standard Time, RCColloran@... writes: << , do you have fibro or any other med condition, I know you told me once, but my mind CRS. LOL You were talking about your muscles and maybe being the pred. I have fibro, and my muscles hurt all the time. It is so hard to figure out which is which. >> , I have a condition called " muscle atrophy " Dr's do not know why so much muscle loss in my body. I was told I have on top of the RP another " connective tisssue " disorder that might be the reason. But I was on a Drug Called " Lupron " and that drug damed near killed me and ever since I took it my muscle problem keeps getting worse and worse. I try and I try to work out now but I cant do it anylonger, I hurt then bruse real bad, they only exercize I can do now is in water. K.P. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 11:18:55 AM Central Standard Time, RCColloran@... writes: << , do you have fibro or any other med condition, I know you told me once, but my mind CRS. LOL You were talking about your muscles and maybe being the pred. I have fibro, and my muscles hurt all the time. It is so hard to figure out which is which. >> ALSO, I think with all the Pred I was on not to mention being pulsed 2 times with 3000 mg also has a lot to do with my muscle atrophy problem, But would I do it again (pulse pred 3000mg) Yes Siry! I sware by it, it shocked my immune system and gave me my remmison and to me it was worth it even though all my muscles are shoot to S----. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 >> I was told "several" times by all my specialists that people like us (autoimmune) "Should Never" take any form of "Sulfa based drugs," due to the fact that the drug has some type of bad reaction with the sun and sunlight and people with RP, Lupus, and other forms of these disorder can become even 100% more sun sensitive on the "Sulfa Drugs." Dr Trenthem is one the who actually even went as far as writing in my Medical Records. P. Thanks , I knew it was something I just couldn't remember what. Did you get 's address to send your membership contribution? If not let me know. Love Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 12:16:45 PM Central Standard Time, Lu1953@... writes: << Did you get 's address to send your membership contribution? >> All Done and sent Friday! kp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 I wwonder if that is why my sunburn was so bad (3rd degree) I know a lot of my meds make me extra sensitive to the sun. Inrteresting. LOL,Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Thank God I'm not the only one with trouble typing! My favorite one is when I type LOO instead of LOL, Of course, I could just come up with something to mean LOO - any ideas? LOL, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 3:58:38 PM Central Standard Time, JOstry93@... writes: << I wwonder if that is why my sunburn was so bad (3rd degree) I know a lot of my meds make me extra sensitive to the sun >> Were you on a Sulfa Drug when you got burned? If so it " was " because even people that do not have RP are NOT to be in the sun when on a Sulfa! The pharmacy should have warned you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 9:55:20 AM Pacific Standard Time, Idigflower@... writes: << I try and I try to work out now but I cant do it anylonger, I hurt then bruse real bad, they only exercize I can do now is in water. >> , I try too, but I just can't do it. Can hardly work in the yard or house any more. I do have a pool and in the summer the water exercise is about the only thing that helps, as long as I don't over do it. I bruise easily too...look like I've been run over by a truck or lost the fight. LOL C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 9:55:20 AM Pacific Standard Time, Idigflower@... writes: << I try and I try to work out now but I cant do it anylonger, I hurt then bruse real bad, they only exercize I can do now is in water. >> , I try too, but I just can't do it. Can hardly work in the yard or house any more. I do have a pool and in the summer the water exercise is about the only thing that helps, as long as I don't over do it. I bruise easily too...look like I've been run over by a truck or lost the fight. LOL C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 9:59:47 AM Pacific Standard Time, Idigflower@... writes: << I sware by it, it shocked my immune system and gave me my remmison and to me it was worth it even though all my muscles are shoot to S----. >> , my muscles are already shot to S---, so what could it hurt. LOL I don't imagin too many doctors do this procedure do they. I know some of the others in the group had it done too. I'm so glad that you are flare free and in remission. I have a feeling remission will be on it's way for alot of us soon. I can just feel it, maybe you and Dwight are starting a new trend for us. lOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 In a message dated 3/19/01 9:59:47 AM Pacific Standard Time, Idigflower@... writes: << I sware by it, it shocked my immune system and gave me my remmison and to me it was worth it even though all my muscles are shoot to S----. >> , my muscles are already shot to S---, so what could it hurt. LOL I don't imagin too many doctors do this procedure do they. I know some of the others in the group had it done too. I'm so glad that you are flare free and in remission. I have a feeling remission will be on it's way for alot of us soon. I can just feel it, maybe you and Dwight are starting a new trend for us. lOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 In a message dated 3/19/01 11:31:07 PM Central Standard Time, RCColloran@... writes: << I bruise easily too...look like I've been run over by a truck or lost the fight. LOL >> Weird! I do too (bruise easy all the time), I never used to before the RP! Anyone know why we bruise so easy now? even with out getting bumped? kp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 In a message dated 3/20/01 8:49:29 AM Pacific Standard Time, Idigflower@... writes: << Weird! I do too (bruise easy all the time), I never used to before the RP! Anyone know why we bruise so easy now? even with out getting bumped? kp >> , I was told it is from the pred. C Quote Link to comment Share on other sites More sharing options...
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