Guest guest Posted March 14, 2000 Report Share Posted March 14, 2000 Hi , Thanks for the info ... and I'm sure you'll be flinging the wig and returning it to its box soon. I'll keep the info on the Rogaine on hand though, just in case. As far as Dr. Trentham prescribing something for the stomach, he wanted to see how my system would react to it. If it's only nausea, I can handle it and today was the first treatment. If it gets worse, I'll be sure to ask for something for that. He did give encouraging words saying that because my primary and his brother (who is also a Dr.) did a correct diagnosis with my first flare about 6 months after I had kidney surgery, and that I've had the medrose pac blast 4-5 times, that I have a good chance of keeping this under control. Additionally, he wants to prevent the steroid use, if at all possible. So, if it means a little or a lot of hair loss, so be it. My husband has been concerned but also quite supportive with this and just yesterday, we shared this with our boys (3 of them ... and 2 are in CA). He asked a lot more questions than I did (thanks to your post on ?'s that spouses should as and what info to always keep on hand). He made sure he had the driving route down, that I had all of my records, referrals, etc.. and I don't think that RP would get the best of him. We share and talk about everything and have for over 15 years now. So, I'm sure if a shopping trip means a wig, he'd suggest a stop at 's Secret to make it interesting (he's also very handsome). On another note, my 13 year old stood in the kitchen this a.m. and made sure I took the first dose .... after asking me three times in 45 minutes, I relented but only after eating. I will close for now ... only 275 messages to check today ... it's almost like a full time job just trying to read everyone's news and new info they contribute daily. Stay well and I'll keep you informed on the drug side effects. Thanks for all your help. Kathleen Loch Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2000 Report Share Posted March 15, 2000 I started loosinghair shortly after i was first diagnosd ih rp but before I started any toxic drugs. Yes BEFORE. The rheumy sad it was ery unlikelytested me or a fewther thins like lupus ec. and fnalyinformedme zihad a " rare form of arare diore " . well am here to tell you am tired of being s special !!!!! (hah). asmy hair fell out, I did ge it cut shot, veryshort so I wouldn't noticeit as muca asi lost it. eventually i lost all hair. At frst it scared my 3 year ldgranddaughte untl I sarted oplaying a ame wth her and let her pick the color of the day and she wold draw a picture on my head. (I did not want her to be scred of me) so onedayI wasorane, one day purple. etc fer awhile it didn't bther her a all adn they had fun (have a randson to) playing with my wigs and hats loe denise p,s although no longer on the toxic meds my hair hs rwon back but VERY slowy it grows I onlyhae oget it cut about every 6 months, and occasionally still i lose a clump here ad ther. have never regrown underarm hair, and leg hair is verysparse. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2000 Report Share Posted March 15, 2000 I just thoghtI'd mention I got all three of my wgs for free. At ocal hospital they had a support group fo people with terminal lillnesses and I was welcomed altougalmost al h others had cancer fsome sort inremission or oterwise) They hadhad wigs donated to hem. TEYals hadquitea supply of head wraps ec tat were made by vlunteers. te were also free. So you migtcheck to see if they have thisin your area. orifthey havea women's clinic. for naseau I wes perscribed compazine. andi a here to tell you it isgreat stuff. it got me throug he emo tolerably. I still use it for naseau and at times ha to eat it like cadny. But he coompazne worked great. love denise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2000 Report Share Posted March 15, 2000 I also lost all my hair about a year before I had other signs of RP. I had no hair for 2 years. Loosing all your hair is a terrible experience. Until you are in that position you have no idea how many ways it can effect your life. My hair grew back because of the high doses of pred. Ros Re: Kathleen/Methotrexate > From: dlbmo@... > > I started loosinghair shortly after i was first diagnosd ih rp but > before I started any toxic drugs. Yes BEFORE. The rheumy sad it was > ery unlikelytested me or a fewther thins like lupus ec. and > fnalyinformedme zihad a " rare form of arare diore " . well am here to > tell you am tired of being s special !!!!! (hah). asmy hair fell out, I > did ge it cut shot, veryshort so I wouldn't noticeit as muca asi lost > it. eventually i lost all hair. At frst it scared my 3 year > ldgranddaughte untl I sarted oplaying a ame wth her and let her pick the > color of the day and she wold draw a picture on my head. (I did not > want her to be scred of me) so onedayI wasorane, one day purple. etc > fer awhile it didn't bther her a all adn they had fun (have a randson > to) playing with my wigs and hats > loe > denise > > p,s although no longer on the toxic meds my hair hs rwon back but VERY > slowy it grows I onlyhae oget it cut about every 6 months, and > occasionally still i lose a clump here ad ther. have never regrown > underarm hair, and leg hair is verysparse. > > > ------------------------------------------------------------------------ > MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2122/0/_/32049/_/953157317/ > ------------------------------------------------------------------------ > > 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 March 16, 2000 Report Share Posted March 16, 2000 Thanks . My hair is short to begin with, so I'll be watching for hair loss anyway. Dr. Trentham thought it was odd and asked why I didn't wear it longer to cover my ears. I don't have cauliflower ear yet ... so why not be trendy whenever you can. I do like the different colors your grandkids chose .... very funny game. I have one 13 year old son at home and when we told him about the RP and possible hearing loss, he was overjoyed as he wants to give up his Spanish classes for sign language .... not going to happen! Thanks again. Just Me, Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2000 Report Share Posted March 16, 2000 Thanks again Diane .. I'll keep this info in my ever-growing file. Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2000 Report Share Posted March 16, 2000 Dear Kathleen, I laugh, Kidswill try won't they (referring toyour son's trying to get out of spanish class) and they are good at it. (they do get better at it with age thoug I'll warn you hah). love denise Quote Link to comment Share on other sites More sharing options...
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