Guest guest Posted May 24, 2004 Report Share Posted May 24, 2004 Hi Bonnie: The skin fungus I had was labeled as " tinea versicolor " by Dr. . After moving out of the apartment and 30 days on Sporanox, it all totally cleared up. I am estatic about that. Yes, it was slowly spreading to my legs and thighs before my diagnosis and treatment. Now it is all gone. I can't believe how much of a mess I was in that apartment. Now that I am out of there, things are much better, but my immune system is trashed and I live with the aftermath each day. He prescribed IVIG therapy for the neuropathy which also rebuilds the immune system, but I do not have insurance. Anyway, thanks for taking a look at the photos. Anything I can do to enlighten others an raise awareness to this devastasting epidemic of mold exposure, I am happy to do. Stacey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 Welcome to this group. Everyone helps each other so much. Congratulations on your two beautiful children! We have four children (ages 15-21) and I suspect my RA was rearing it's ugly head way back during all of my pregnancies (and 3 miscarriages and infertility treatments). My doctors always told me back then I was just tired (tired isn't even the word for it!) because I was a young mom with 4 children and a home licensed daycare. The pain was because I was always on the go, lifting babies (twins of my own), etc. I had a gut feeling there was always more to it but no one ever ran any RA levels on me or even mentioned it until I insisted on it a few years ago at the urging of a friend of mine with RA and Lupus. I was actually glad to finally have an answer. If you go back in the archives you will find lots of info in the past month or two for sure about disability and SS. My son is 21, was struck by lightning when he was 13, and from the ages of 18-20 we battled the SS system. I wish someone had guided me through it before we got to the point we had to get an attorney. In our case the attorney did nothing but show up at the hearing and get a big chunk of money. I did all of the paperwork, legwork, etc. He did nothing. Your doctor's need to put in writing that you will be unable to do any substantial work and this is expected to last your lifetime. Also, be sure to immediately contact your congressman and/or US Senator. They have office liaisons that help you through this process and having them on your side and having their inquiry in your SS file gets attention. I have a relative that works for SS and she told me that. Only I knew all of this after the fact because I didn't realize that she works in the SS appeals office for the judges and hadn't talked to her in years. Just ran into her in the office while my son was talking to the judge. I will help you in any way I can. If you would like to talk by phone, please e-mail me privately and I will call you when I get a chance. I now have unlimited long distance on my home phone for $20 a month so it's nice to be able to freely use that instead of waiting for evenings and weekends for free cell phone minutes. I haven't applied yet for SS because I'm afraid that if it took me 2 years to be without an income that we would be in financial ruins so right now I have family running my business out of kindness to help and I just more or less supervise. Becky natesmom4@... [ ] new here I am new here. A friend of mine thought it may help if I found some support groups to help deal with my RA/Lupus. I had symptoms of lupus during my three miscarriages, then was blessed with my son who is three. Six weeks postpartum I started having joint pain..weakness..and then tested positive for RA. My disease is going so fast now. In the last year in addition to the hands, knees, feet, ankles pain and weakness, I developed back pain, and now horrible neck pain. I am a Mom of now two, because we adopted a second child..from Russia. We were in the proceedings to adopt when my disease was getting worse, but couldn't say no to this beautiful child for my son to have a sister. I guess I was hoping to talk with some other Mom's who suffer from these horrible diseases and how they cope. I only take my pain meds at night. I am afraid to take them during the day with the children. I am on Methotrexate, Plaqunil, Bextra, Neurotin, Vicodin (at night I take), and now a muscle relaxer for the neck pain, which just puts me to sleep! I of course can no longer work, and blessed to have a wonderful husband, and a great sitter to help with the kids. But, the guilt I feel of not working is horrible. I had a very nice job working for one of the Big Three prior to my illness. I am in the process of filing for disability. I have a hearing set for August. Does anyone know what goes on in the hearing. It took over a year to get my hearing, and my disease is so much worse now. Just wondered how it all works? Also, would love any advice on how to deal with the emotional pain..when the physical pain started in my neck..it was like oh my gosh I am really sick..then finding nodules in my hands..and a drug list that is longer than my grocery list.. Thanks for listening, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2004 Report Share Posted June 4, 2004 Welcome to the group . I'm sure you will find plenty of information, understanding and support from the group here. I'm sorry you are dealing with RA and Lupus. But very glad you found some support. Looking forward to seeing you interact with us :-) Rick www.whosyomama.com [ ] new here I am new here. A friend of mine thought it may help if I found some support groups to help deal with my RA/Lupus. I had symptoms of lupus during my three miscarriages, then was blessed with my son who is three. Six weeks postpartum I started having joint pain..weakness..and then tested positive for RA. My disease is going so fast now. In the last year in addition to the hands, knees, feet, ankles pain and weakness, I developed back pain, and now horrible neck pain. I am a Mom of now two, because we adopted a second child..from Russia. We were in the proceedings to adopt when my disease was getting worse, but couldn't say no to this beautiful child for my son to have a sister. I guess I was hoping to talk with some other Mom's who suffer from these horrible diseases and how they cope. I only take my pain meds at night. I am afraid to take them during the day with the children. I am on Methotrexate, Plaqunil, Bextra, Neurotin, Vicodin (at night I take), and now a muscle relaxer for the neck pain, which just puts me to sleep! I of course can no longer work, and blessed to have a wonderful husband, and a great sitter to help with the kids. But, the guilt I feel of not working is horrible. I had a very nice job working for one of the Big Three prior to my illness. I am in the process of filing for disability. I have a hearing set for August. Does anyone know what goes on in the hearing. It took over a year to get my hearing, and my disease is so much worse now. Just wondered how it all works? Also, would love any advice on how to deal with the emotional pain..when the physical pain started in my neck..it was like oh my gosh I am really sick..then finding nodules in my hands..and a drug list that is longer than my grocery list.. Thanks for listening, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 I haven't any experience with grape seed extract (although I do love red wine, LOL!), but welcome to the group, Dawn! I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] new here > I was just wondering if anyone has had any relief using grapeseed > extract. > Thanks > Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 Hi Dawn. I¹ve taken grapeseed but can¹t say I¹ve noticed any improvements. a > I was just wondering if anyone has had any relief using grapeseed > extract. > Thanks > Dawn > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Hi , Would like to welcome you to the group. I live in Oklahoma, 41 years old, have 2 daughters 22 and 9 do don't feel bad. I'm on Humira bi-weekly, and Vicodin for the pain. It's good to here that the knee replacements went well. So glad that you have joined us, hugs Tawny > Hi Y'all! I'm almost 40 (yikes!) and I live in Kentucky with my DH and > 2 kids; Ricky is almost 18 and is almost 9. Yes, God has a > sense of humor when he puts 9 years between your children! > > I was diagnosed with RA 14 years ago and I'm taking Humira, Celebrex, > prednisone and Methotrexate. Even typing it out sounds scary. I'm not > responding very well to the Humira but the rheumatologist wants to > give it a few more months. > > I had bilateral knee replacements in December and it's the best thing > I've ever done. I would not have said that in January, however. It > takes about 3 months to feel better; or at least that was my experience. > > Oh well, I've talked long enough. Just wanted to say Hey! > > God Bless! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Welcome to the group. How long have you been taking Humira? I started in January and I felt better right away, but now that it's been more than 5 months I think it's working even better than it did intially. I am also on methotrexate and prednisone, and folic acid and calcuim supplements (due to my increased risk for osteoporosis - bone loss from the prednisone). I am weaning off prednisone and only on 2-3 mgs alternating doses daily. I'm 33 and was diagnosed about a year ago, one daughter who is turning 4 in a few hours. I am curious what medications you were on when you had your daughter since it was after your diagnosis, and what happened after she was born with the RA. I'm hoping I can have one more child someday. Welcome again. Jennie > Hi Y'all! I'm almost 40 (yikes!) and I live in Kentucky with my DH and > 2 kids; Ricky is almost 18 and is almost 9. Yes, God has a > sense of humor when he puts 9 years between your children! > > I was diagnosed with RA 14 years ago and I'm taking Humira, Celebrex, > prednisone and Methotrexate. Even typing it out sounds scary. I'm not > responding very well to the Humira but the rheumatologist wants to > give it a few more months. > > I had bilateral knee replacements in December and it's the best thing > I've ever done. I would not have said that in January, however. It > takes about 3 months to feel better; or at least that was my experience. > > Oh well, I've talked long enough. Just wanted to say Hey! > > God Bless! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2004 Report Share Posted July 4, 2004 Welcome to the group, ! How long have you been on the Humira? Glad to hear that your knee replacements were so successful. I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] New Here > Hi Y'all! I'm almost 40 (yikes!) and I live in Kentucky with my DH and > 2 kids; Ricky is almost 18 and is almost 9. Yes, God has a > sense of humor when he puts 9 years between your children! > > I was diagnosed with RA 14 years ago and I'm taking Humira, Celebrex, > prednisone and Methotrexate. Even typing it out sounds scary. I'm not > responding very well to the Humira but the rheumatologist wants to > give it a few more months. > > I had bilateral knee replacements in December and it's the best thing > I've ever done. I would not have said that in January, however. It > takes about 3 months to feel better; or at least that was my experience. > > Oh well, I've talked long enough. Just wanted to say Hey! > > God Bless! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 Hi, Tawny Dana here. I just saw your post here, and my aunt who has re says that Humira has dreadful sides. I am curious about your experience with this. She told me that if I have to work, I will not be able to tolerate it. She has tried every RA med, is 67 years old, has had both knees, shoulders and hips replaced. Thanks! [ ] Re: New Here Hi , Would like to welcome you to the group. I live in Oklahoma, 41 years old, have 2 daughters 22 and 9 do don't feel bad. I'm on Humira bi-weekly, and Vicodin for the pain. It's good to here that the knee replacements went well. So glad that you have joined us, hugs Tawny > Hi Y'all! I'm almost 40 (yikes!) and I live in Kentucky with my DH and > 2 kids; Ricky is almost 18 and is almost 9. Yes, God has a > sense of humor when he puts 9 years between your children! > > I was diagnosed with RA 14 years ago and I'm taking Humira, Celebrex, > prednisone and Methotrexate. Even typing it out sounds scary. I'm not > responding very well to the Humira but the rheumatologist wants to > give it a few more months. > > I had bilateral knee replacements in December and it's the best thing > I've ever done. I would not have said that in January, however. It > takes about 3 months to feel better; or at least that was my experience. > > Oh well, I've talked long enough. Just wanted to say Hey! > > God Bless! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 Hi. I know you weren't asking me, but I've been on Humira since January and the worst side effect I have is some redness at the injection site (biweekly injections). It's really helped my RA pain/swelling, although not much on the fatigue side. I'm also on 2- 3 mgs of predinsone daily (weaning down from 7 when I started Humira) and 17.5 mgs of methotrexate weekly. I'm 33 and I've been diagnosed for a year. I work full time and have a daughter who just turned 4 (yesterday). Working has been much easier since starting Humira. Jennie > > Hi Y'all! I'm almost 40 (yikes!) and I live in Kentucky with my DH > and > > 2 kids; Ricky is almost 18 and is almost 9. Yes, God has a > > sense of humor when he puts 9 years between your children! > > > > I was diagnosed with RA 14 years ago and I'm taking Humira, > Celebrex, > > prednisone and Methotrexate. Even typing it out sounds scary. I'm > not > > responding very well to the Humira but the rheumatologist wants to > > give it a few more months. > > > > I had bilateral knee replacements in December and it's the best > thing > > I've ever done. I would not have said that in January, however. It > > takes about 3 months to feel better; or at least that was my > experience. > > > > Oh well, I've talked long enough. Just wanted to say Hey! > > > > God Bless! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 Dana, Everyone experiences different side effects with meds. I have not had any side effects really from the Humira. I did experience pain a few days after the injection, but that is very rare now also. I feel the Humira would work better for me, if I could take a combo with it, such as Methotrexate. But I'm not able to take that drug, because it raises my liver enzymes. I am glad to be able to take the Humira, because it helps slow down the disease. Hope this helps, T > > Hi Y'all! I'm almost 40 (yikes!) and I live in Kentucky with my DH > and > > 2 kids; Ricky is almost 18 and is almost 9. Yes, God has a > > sense of humor when he puts 9 years between your children! > > > > I was diagnosed with RA 14 years ago and I'm taking Humira, > Celebrex, > > prednisone and Methotrexate. Even typing it out sounds scary. I'm > not > > responding very well to the Humira but the rheumatologist wants to > > give it a few more months. > > > > I had bilateral knee replacements in December and it's the best > thing > > I've ever done. I would not have said that in January, however. It > > takes about 3 months to feel better; or at least that was my > experience. > > > > Oh well, I've talked long enough. Just wanted to say Hey! > > > > God Bless! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 I've had few side effects from the Humira except dreadful pain when I inject it; it feels like a hornet's sting. I actually dread giving myself the medicine but I am willing to deal with it if it can possibly help. Hopefully this is one problem that will go away over time. God bless, xponder70 <xponder70@...> wrote: Hi. I know you weren't asking me, but I've been on Humira since January and the worst side effect I have is some redness at the injection site (biweekly injections). It's really helped my RA pain/swelling, although not much on the fatigue side. I'm also on 2- 3 mgs of predinsone daily (weaning down from 7 when I started Humira) and 17.5 mgs of methotrexate weekly. I'm 33 and I've been diagnosed for a year. I work full time and have a daughter who just turned 4 (yesterday). Working has been much easier since starting Humira. Jennie > > Hi Y'all! I'm almost 40 (yikes!) and I live in Kentucky with my DH > and > > 2 kids; Ricky is almost 18 and is almost 9. Yes, God has a > > sense of humor when he puts 9 years between your children! > > > > I was diagnosed with RA 14 years ago and I'm taking Humira, > Celebrex, > > prednisone and Methotrexate. Even typing it out sounds scary. I'm > not > > responding very well to the Humira but the rheumatologist wants to > > give it a few more months. > > > > I had bilateral knee replacements in December and it's the best > thing > > I've ever done. I would not have said that in January, however. It > > takes about 3 months to feel better; or at least that was my > experience. > > > > Oh well, I've talked long enough. Just wanted to say Hey! > > > > God Bless! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 , I've been taking Humira for more than a year; Enbrel before that. Enbrel didn't work at all so I'm hoping Humira will kick in soon - hasn't helped that much to this point. <Matsumura_Clan@...> wrote: Welcome to the group, ! How long have you been on the Humira? Glad to hear that your knee replacements were so successful. I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] New Here > Hi Y'all! I'm almost 40 (yikes!) and I live in Kentucky with my DH and > 2 kids; Ricky is almost 18 and is almost 9. Yes, God has a > sense of humor when he puts 9 years between your children! > > I was diagnosed with RA 14 years ago and I'm taking Humira, Celebrex, > prednisone and Methotrexate. Even typing it out sounds scary. I'm not > responding very well to the Humira but the rheumatologist wants to > give it a few more months. > > I had bilateral knee replacements in December and it's the best thing > I've ever done. I would not have said that in January, however. It > takes about 3 months to feel better; or at least that was my experience. > > Oh well, I've talked long enough. Just wanted to say Hey! > > God Bless! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 , It helps so much to inject the Humira very slow, less burn. I'm gettin' to be a old pro! > > > Hi Y'all! I'm almost 40 (yikes!) and I live in Kentucky with > my DH > > and > > > 2 kids; Ricky is almost 18 and is almost 9. Yes, God > has a > > > sense of humor when he puts 9 years between your children! > > > > > > I was diagnosed with RA 14 years ago and I'm taking Humira, > > Celebrex, > > > prednisone and Methotrexate. Even typing it out sounds scary. > I'm > > not > > > responding very well to the Humira but the rheumatologist > wants to > > > give it a few more months. > > > > > > I had bilateral knee replacements in December and it's the > best > > thing > > > I've ever done. I would not have said that in January, > however. It > > > takes about 3 months to feel better; or at least that was my > > experience. > > > > > > Oh well, I've talked long enough. Just wanted to say Hey! > > > > > > God Bless! > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Welcome to the group, Cheryle! Sorry that you are having trouble with your health. Is your physician (I'm assuming a rheumatologist) doing anything to treat your pain? Has he given you a diagnosis? The blisters could be any of several things. It would be a good idea to go in and have your rheumatologist or a dermatologist have a look at them. I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] New here > Hello, > I am new here, My Name is Cheryle > > I am 32 and have 3 kiddos ages 8.5, 6 and 2.5 > I will be married 12 years a week from today. > > I have been in pain since my last baby was born, We moved from calif > to oregon because of the docs where we were from were not very good. > I see a great specialist now and love him. He at first thought I had > fibro but my sedrate level kept going up so he tried me on the > prednisone and it worked so he put me on plaquinel, Now My question > is. In the last month I have found a few blisters on my face, mainly > in my chin area, They are in a clust of like 3-4 and red and have > clear liquid in them, they are the size of a small pea. the cluster. > I was wondering if this is the starting signs of lupus. I have a > great family history of it and have 14 different autoammune dies. in > my family. > > any help would be greatly accepted! > thanks tons > Cheryle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Hello, Yes He is giving me plaquinel and My general doc is giving me t3 for the pain and I also take zanaflex at night for sleep. I have been pretty tired alot so he also said he would give me something for that. he told me if my gdoc doesnt give me anymore t3s he will start me on them. I will be telling him about it. what else could they be from?? <Matsumura_Clan@...> wrote: Welcome to the group, Cheryle! Sorry that you are having trouble with your health. Is your physician (I'm assuming a rheumatologist) doing anything to treat your pain? Has he given you a diagnosis? The blisters could be any of several things. It would be a good idea to go in and have your rheumatologist or a dermatologist have a look at them. I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] New here > Hello, > I am new here, My Name is Cheryle > > I am 32 and have 3 kiddos ages 8.5, 6 and 2.5 > I will be married 12 years a week from today. > > I have been in pain since my last baby was born, We moved from calif > to oregon because of the docs where we were from were not very good. > I see a great specialist now and love him. He at first thought I had > fibro but my sedrate level kept going up so he tried me on the > prednisone and it worked so he put me on plaquinel, Now My question > is. In the last month I have found a few blisters on my face, mainly > in my chin area, They are in a clust of like 3-4 and red and have > clear liquid in them, they are the size of a small pea. the cluster. > I was wondering if this is the starting signs of lupus. I have a > great family history of it and have 14 different autoammune dies. in > my family. > > any help would be greatly accepted! > thanks tons > Cheryle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Hi Cheryle, Welcome to the group. I am 41 years old, been married 12 years, and have 2 daughters 22 and 9. I have lived in Oklahoma all my life. I enjoy this group, there are so many wonderful people here. I'm not sure about your blisters, please try to get in to your doctor. Let me know what you find out, I'm interested to here what it can be. You take care, and so glad your here, Tawny --- In , " CheryleMOM " <cherylemom@y...> wrote: > Hello, > I am new here, My Name is Cheryle > > I am 32 and have 3 kiddos ages 8.5, 6 and 2.5 > I will be married 12 years a week from today. > > I have been in pain since my last baby was born, We moved from calif > to oregon because of the docs where we were from were not very good. > I see a great specialist now and love him. He at first thought I had > fibro but my sedrate level kept going up so he tried me on the > prednisone and it worked so he put me on plaquinel, Now My question > is. In the last month I have found a few blisters on my face, mainly > in my chin area, They are in a clust of like 3-4 and red and have > clear liquid in them, they are the size of a small pea. the cluster. > I was wondering if this is the starting signs of lupus. I have a > great family history of it and have 14 different autoammune dies. in > my family. > > any help would be greatly accepted! > thanks tons > Cheryle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Cheryle, did either physician give you a diagnosis of your systemic problems? The blisters on your chin could be due to something as simple and common as herpes simplex virus 1 (the virus that causes fever blisters and cold sores). I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org Re: [ ] New here > Hello, > Yes He is giving me plaquinel and My general doc is giving me t3 for the pain and I also take zanaflex at night for sleep. I have been pretty tired alot so he also said he would give me something for that. he told me if my gdoc doesnt give me anymore t3s he will start me on them. > > I will be telling him about it. what else could they be from?? > > <Matsumura_Clan@...> wrote: > Welcome to the group, Cheryle! Sorry that you are having trouble with > your health. > > Is your physician (I'm assuming a rheumatologist) doing anything to > treat your pain? Has he given you a diagnosis? > > The blisters could be any of several things. It would be a good idea to > go in and have your rheumatologist or a dermatologist have a look at > them. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Hi and welcome to the group. I'm have mixed emotions when I see another new person around my same age. It's good to have people in this group who can understand having RA and little kids at the same time, but sad to see anyone in that position too. I'm 33, was diagnosed about a year ago, and have a daugther who just turned 4, and I'm recently single. Also, my mom has severe RA she developed over 20 years ago, so I grew up seeing the effects of RA before all the great drugs we have today. Welcome to the group. Jennie --- In , " CheryleMOM " <cherylemom@y...> wrote: > Hello, > I am new here, My Name is Cheryle > > I am 32 and have 3 kiddos ages 8.5, 6 and 2.5 > I will be married 12 years a week from today. > > I have been in pain since my last baby was born, We moved from calif > to oregon because of the docs where we were from were not very good. > I see a great specialist now and love him. He at first thought I had > fibro but my sedrate level kept going up so he tried me on the > prednisone and it worked so he put me on plaquinel, Now My question > is. In the last month I have found a few blisters on my face, mainly > in my chin area, They are in a clust of like 3-4 and red and have > clear liquid in them, they are the size of a small pea. the cluster. > I was wondering if this is the starting signs of lupus. I have a > great family history of it and have 14 different autoammune dies. in > my family. > > any help would be greatly accepted! > thanks tons > Cheryle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 What kind of withdrawl symptoms did you experience from vioxx? Welcome to the group!!! I Cristen [ ] New here hello. my story is pretty long so i'll put in highlights now and fill in the blanks if others want to hear more. i am 32 years old and suffered with thyroid problems for the last 12 years. in dec 03 i had a total thyroidectomy. it was very successful. since that time we are discovering many new diseases in my body that the thyroid was 'covering up'. a lot of the symptoms are the same. so i am recently diagnosed with RA, Sjogrens, osteopenia, some liver problem we havent figured out yet, and other medical issues. i was taking vioxx for the last 3 years and had to stop taking that. the withdrawl was horrible!!! my rheumy put me on plaquenil 200 mg 2x/day. it has only been 3 weeks so i'm not really feeling relief yet. i also have weight issues and need to loose about 40 pounds, but am afraid of the pain i'll be left with so dont want to exercise. a paradox? any ideas on this? here is something ironic...i live in the desert and was told it was good for arthritis pain, but recently went on vacation to mexico and found the humidity was helping me out more. now i'm not planning on moving but has anyone else found that humidity helps arthritis? so, any help you can give me would be great. i'm new to arthritis and am looking for a local support group in my town too. thanks, julie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 , I would like to welcome you in the group. I'm glad that you found the group, lots of information and great people. You have had such a bad time, hope things start getting better soon, Tawny > > > hello. > my story is pretty long so i'll put in highlights now and fill in the > blanks if others want to hear more. > > i am 32 years old and suffered with thyroid problems for the last 12 > years. in dec 03 i had a total thyroidectomy. it was very > successful. since that time we are discovering many new diseases in > my body that the thyroid was 'covering up'. a lot of the symptoms are > the same. > > so i am recently diagnosed with RA, Sjogrens, osteopenia, some liver > problem we havent figured out yet, and other medical issues. i was > taking vioxx for the last 3 years and had to stop taking that. the > withdrawl was horrible!!! my rheumy put me on plaquenil 200 mg > 2x/day. it has only been 3 weeks so i'm not really feeling relief yet. > > i also have weight issues and need to loose about 40 pounds, but am > afraid of the pain i'll be left with so dont want to exercise. a > paradox? any ideas on this? > > here is something ironic...i live in the desert and was told it was > good for arthritis pain, but recently went on vacation to mexico and > found the humidity was helping me out more. now i'm not planning on > moving but has anyone else found that humidity helps arthritis? > > so, any help you can give me would be great. i'm new to arthritis and > am looking for a local support group in my town too. > thanks, > julie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 Hello Joy I think your idea is a good one. I have been reading a Sesame Book to Aedan called , we are all the same we are all different. It is a good book to give visuals to what you are saying. There are even Asian eyes that Aedan says are his shape (we are not Asian) I have the book in paper back. Welcome back to the group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 Hi Joy Aedan is 2. He'll be three in June. He had ptosis surgery when he was 10 weeks. He is scheduled for eye surgery tomorrow. The doc thinks that strabismus might have been caused by the lack of sight his first few weeks. Where are you and ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 It sounds to me like you are already doing a good job, I have BPES and so does my 8 month old daughter. The message you posted are the things that I worry about most for her, because I remember what I experienced in early childhood. To be honest, I am impressed that this is the first time this has been an issue. Lots of kids just ask questions because they are curious, and it isn't fun when they do, but it's easier to just explain it and usually kids are okay with that and then they move on. As far as teasing, deal with it just like any teasing, stay positive, kids who tease will tease more if the other child gets upset. Just curious, has your daughter had any surgery yet? Lily had ptosis surgery with silicon slings, so far, just to open her eyes. > > > Hello, > > I actually found this board a couple years ago, but there was very > little action. The other day I decided to look again and I couldn't > believe it :-) > > My husband and my 3 yr old daughter have bleph. My husband was the > first in his family to have it and 20 some years ago, when he had the > sling surgery, he was told it was a fluke condition. We did not know > it was genetic until our daughter was born with it. has been > seeing a pediatric opthamologist since she was born and her sight is > fine, so I think any surgery will be off a couple years. > > For now my questions aren't surgery related. A couple weeks ago, we > were at a storytime in a local library and there were three girls > sitting in front of us. The leader was reading a book and asking > questions, which my daughter was answering along with many of the > other children. The three girls kept turning around and looking at > and then she turned to me and asked why they kept staring at > her. I was caught a bit off guard and said it was probably because she > knew all of the answers, but I'm pretty sure it was because of her > eyes. I knew this day would come, but I thought it wouldn't be until > she was in school, and now I'm finding myself unprepared and in a rush > to become prepared. So, I'm trying to find a way to start talking with > her about it. Basically, I want to give her ways to respond to the > looks (and the teasing that will surely come her way) and I want her > to know, really know, that she is a beautiful girl and nothing anyone > says will ever change that. > > I thought for now, since she's only three, I could start by talking > about how people look different - different color hair, different > color skin, different eye shape, etc. Sure, she knows this already, > but we've never really talked about it past her comments about how > that little girl has the same hair or that little girl doesn't. > > Any suggestions would be greatly appreciated and I look forward to > corresponding with all of you. > > Thanks, Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 Hi Beth, Thanks for your input. It's nice to hear something from someone who has been there and done that. My husband doesn't really say too much about what it was like when he was a child. has not had any surgery yet. We think she might have some levator muscle in her eyelids, vs my husband who didn't have any, because while the eyelid still does not have the crease or roll up, she does seem to have some control. Of course, the drs won't know until they are in there during the surgery. The eyelids just hit the top of her pupils so she hasn't had the head tilting either. And the skin folds at the corners doesn't seem too bad either. My husband says his was worse. He isn't happy with the results of his surgeries (two, the corner work and the sling) so he's leaning toward waiting longer for 's surgery. Of course, his surgery was 22 years ago - I'm sure they've come a long way since then. I think we will start the hunt for a good surgeon in the next year. We talked to only one surgeon when was less than a year old and he said he would do the sling and wait for the corner work - I think that's opposite the normal routine and wonder if he knew what he was talking about. Given my husband's unhappiness with his surgeries (he has tearing problems, bad scarring, etc.), we will definitely want a surgeon who has done this before. Thanks again for your input. I'll have to check out the pics. Joy > > It sounds to me like you are already doing a good job, I have BPES > and so does my 8 month old daughter. The message you posted are the > things that I worry about most for her, because I remember what I > experienced in early childhood. To be honest, I am impressed that > this is the first time this has been an issue. Lots of kids just ask > questions because they are curious, and it isn't fun when they do, > but it's easier to just explain it and usually kids are okay with > that and then they move on. As far as teasing, deal with it just > like any teasing, stay positive, kids who tease will tease more if > the other child gets upset. > > Just curious, has your daughter had any surgery yet? Lily had ptosis > surgery with silicon slings, so far, just to open her eyes. > > > > --- In blepharophimosis , " Joy " <joybdean@h...> wrote: > > > > > > Hello, > > > > I actually found this board a couple years ago, but there was very > > little action. The other day I decided to look again and I couldn't > > believe it :-) > > > > My husband and my 3 yr old daughter have bleph. My husband was the > > first in his family to have it and 20 some years ago, when he had > the > > sling surgery, he was told it was a fluke condition. We did not know > > it was genetic until our daughter was born with it. has been > > seeing a pediatric opthamologist since she was born and her sight is > > fine, so I think any surgery will be off a couple years. > > > > For now my questions aren't surgery related. A couple weeks ago, we > > were at a storytime in a local library and there were three girls > > sitting in front of us. The leader was reading a book and asking > > questions, which my daughter was answering along with many of the > > other children. The three girls kept turning around and looking at > > and then she turned to me and asked why they kept staring at > > her. I was caught a bit off guard and said it was probably because > she > > knew all of the answers, but I'm pretty sure it was because of her > > eyes. I knew this day would come, but I thought it wouldn't be until > > she was in school, and now I'm finding myself unprepared and in a > rush > > to become prepared. So, I'm trying to find a way to start talking > with > > her about it. Basically, I want to give her ways to respond to the > > looks (and the teasing that will surely come her way) and I want her > > to know, really know, that she is a beautiful girl and nothing > anyone > > says will ever change that. > > > > I thought for now, since she's only three, I could start by talking > > about how people look different - different color hair, different > > color skin, different eye shape, etc. Sure, she knows this already, > > but we've never really talked about it past her comments about how > > that little girl has the same hair or that little girl doesn't. > > > > Any suggestions would be greatly appreciated and I look forward to > > corresponding with all of you. > > > > Thanks, Joy Quote Link to comment Share on other sites More sharing options...
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