Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 In a message dated 11/29/00 11:01:03 AM Central Standard Time, tcumming@... writes: << That's great news!! Esp. for those of us thinking about having more children. It's great to know that if we catch it early enough (and I know I'll be watching like a hawk for any signs) we may be able to correct it ourselves!! Thanks for sharing! >> Yes, I never knew about it and I always laid Jenna on her right side! She also favored looking to that side, so it made it worse! If I have another, I will try to prevent it to begin with! Karla <A HREF= " http://jacjoejensplace.homestead.com/PageOne.html " >My Family</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 In a message dated 11/29/00 12:37:41 PM Central Standard Time, AKROPKA@... writes: << Karla, I just went to your website and wanted to let you know that you have the cutest kids! I am glad that you were able to catch Jenna's plagio early on so she didn't have to get treatment. Congratulations! >> Thanks so much Amy! Karla <A HREF= " http://jacjoejensplace.homestead.com/PageOne.html " >My Family</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 Karla, That's great news!! Esp. for those of us thinking about having more children. It's great to know that if we catch it early enough (and I know I'll be watching like a hawk for any signs) we may be able to correct it ourselves!! Thanks for sharing! (Hunter's mom) -----Original Message----- From: Karla [sMTP:karladianne67@...] Sent: Wednesday, November 29, 2000 8:13 AM Plagiocephalyegroups Subject: Hi Everyone Hi everyone. It has been a long time since I posted! Some of you know that my daughter Jenna had a very mild case of plagio and we chose not to get a helmet. Well, she will be one year in a few weeks and her head is totally normal now! No signs at all anymore. Yay! A little background for those of you that don't know or remember. Jenna's was caught very early, she was 2 months old when the doctor mentioned it. I started aggressively repositioning her at about 3 months...maybe a little sooner. Because we caught it so early, it worked! By about 6 or 7 months, her head was about 95% better. Now, there are no signs at all. Just thought I would share our story and say hello! Karla -------------------------- eGroups Sponsor -------------------------~-~> eGroups eLerts It's Easy. It's Fun. Best of All, it's Free! 1/9698/0/_/689409/_/975507203/ --------------------------------------------------------------------> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 Hi Karla! So nice of you to drop in with such good news! I just knew Jenna would come out perfect! Stop in anytime! Kendra (Hanna's mom) Karla wrote: Hi everyone. It has been a long time since I posted! Some of you know that my daughter Jenna had a very mild case of plagio and we chose not to get a helmet. Well, she will be one year in a few weeks and her head is totally normal now! No signs at all anymore. Yay! A little background for those of you that don't know or remember. Jenna's was caught very early, she was 2 months old when the doctor mentioned it. I started aggressively repositioning her at about 3 months...maybe a little sooner. Because we caught it so early, it worked! By about 6 or 7 months, her head was about 95% better. Now, there are no signs at all. Just thought I would share our story and say hello! Karla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 Karla, I just went to your website and wanted to let you know that you have the cutest kids! I am glad that you were able to catch Jenna's plagio early on so she didn't have to get treatment. Congratulations! Amy Kropka -----Original Message----- From: karladianne67@... [mailto:karladianne67@...] Sent: Wednesday, November 29, 2000 12:38 PM Plagiocephalyegroups Subject: Re: Hi Everyone In a message dated 11/29/00 11:01:03 AM Central Standard Time, tcumming@... writes: << That's great news!! Esp. for those of us thinking about having more children. It's great to know that if we catch it early enough (and I know I'll be watching like a hawk for any signs) we may be able to correct it ourselves!! Thanks for sharing! >> Yes, I never knew about it and I always laid Jenna on her right side! She also favored looking to that side, so it made it worse! If I have another, I will try to prevent it to begin with! Karla <A HREF= " http://jacjoejensplace.homestead.com/PageOne.html " >My Family</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2002 Report Share Posted February 21, 2002 Hello Pixie, Glad you joined the group. I've had silicone implants for 9 years and saline for 10 months. I will be getting my implants removed too. ----- Original Message ----- From: littlepixiebear <testerinkstudio@...> < > Sent: Thursday, February 21, 2002 9:12 AM Subject: hi everyone > Thanks for inviting me...here I am. for everyone here's a > brief history: I'm...41...still hurts to say it out loud LOL! I've > had saline implants for 20 years and am scheduled for explant on > March 20th...only 4 weeks...I'm on a countdown! I have no idea what > type they are, my original ps sent my operative report wich says > nothing about the maker and when I called back he brushed me off and > told me only that my " new " ps would know. > All it said was VSOS 215(200) I assume that is the size. I've been > fairly trouble free until this past year. And until I began > researching, had no idea that the infections I keep getting could > indeed be caused by my implants...one of which I think may be > leaking, which is why I started researching in the first place. This > past year alone I've suffered from 5 yeast infections, 1 lung > infection and several sinus infections, all of which my dr can find > no " cause " . I've never ever had such problems. Then also I noticed > my hair thinning, and a toenail fungal thing and dry eyes and nose > and skin and I could go on and on...I was beginning to think I was a > hypocondriac (no doubt I spelled that one wrong) but, come to find > I'm not alone in this and these are true symptoms. whew! what a > relief. Anyhow, I'm a mother of two daughters, grandma of two sweet > 3 year old boys and an artist...bronze sculpture. So that about > somes me up...I look forward to getting to know everyone. > Pixie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2002 Report Share Posted February 21, 2002 HI PIXIE GIRL SO glad you came on over here, it is a cozy little group even though we have about 129 members only a few post regularly and they are the best. The original founder of this group was Patty Fausset and she left the group about a month or so ago after being around 2 years to do some work on writting a book, so here I am moderator and just really a member, who relies as much on everyone else to keep the group going. I try to post what I can as far as natural healing since that is what Patty primarily formed the group for, was for healing and support, so you will read allot of stuff about supplements, herbs, diet, exercise, stuff like that. If you go to our files section there is lots of info on healing after implants, and bokkmarks we have lots of links and stuff. Also in the files sections are our stories under implant explant stories of real women. Then we have a photo albumn and that too is growing so check it all out. I feel that after your implants are gone you should start to feel better, and that it can take a while so be patient, do some detoxing if you feel up to it and try to be positive, feel free to post often to the group for feedback and support that is why we are here! I am sure you read my story so I won't bore you too much with a re-hash of my life, but to update you I am 37 years old, I had implants only 1 and a half years and was almost on my death bed with illness. Since explant by Dr Feng with lift in December 2000 I am so much better, all my abnormal labs are now normal, and most exciting news I got married to the most sweetest man of my dreams in March 2001 (yep with the scars of my mastopexy still quite red and fresh) we ran off to romantic Jackpot Nevada LOL on the Idaho/Nevada border and got hitched. Since then my life has been a wirl wind of great things, healing and moving from my home town of Redwood City California(suburb of San Francisco) and moving to the cold here in Idaho Falls Idaho. Today I am so happy except that my 9 year old daughter is still in CA with her father, I lost her partly cause our relationship suffered greatly while I was ill for 2 years and partly because she is happy in CA but, I am working on that relationship it is so hard. Today I am healthy except still suffer from some aches and pains, that I still think could be related to the problems with my implants, though I cannot be sure. I know I am better and better than I was, with a few setbacks in between. I try to do the healthy things, supplements, diet, work out 4-5 times a week, I am into weighlifting, body building, and spinning, and in the summer mountain biking is awesome here in the rockies! My husband is the most wonderful supportive guy he takes such good care of me, we just bought a brand new home here in IF and he has a fabulous career here, and 4 great kids, I work at the local hospital, I am a unit secretary/CNA for the last 12 years or so, I used to work at Stanford in Palo Alto CA loved it there, but this is a pretty nice hospital for a rural communtiy. I work in surgical ortho so I see allof of stuff and it is interesting, I also work a bit in pediatrics, which i hate, I hate to see sick babies, blah, but I do it anyhow cause I need to work, not a good stay at home woman. I will stop boring you now ha ha. Glad you made it over here, post with us while you go through your explant and I am sure you will get lots of support here. Love and soft hugs Heer ----- Original Message ----- From: " littlepixiebear " <testerinkstudio@...> < > Sent: Thursday, February 21, 2002 7:12 AM Subject: hi everyone > Thanks for inviting me...here I am. for everyone here's a > brief history: I'm...41...still hurts to say it out loud LOL! I've > had saline implants for 20 years and am scheduled for explant on > March 20th...only 4 weeks...I'm on a countdown! I have no idea what > type they are, my original ps sent my operative report wich says > nothing about the maker and when I called back he brushed me off and > told me only that my " new " ps would know. > All it said was VSOS 215(200) I assume that is the size. I've been > fairly trouble free until this past year. And until I began > researching, had no idea that the infections I keep getting could > indeed be caused by my implants...one of which I think may be > leaking, which is why I started researching in the first place. This > past year alone I've suffered from 5 yeast infections, 1 lung > infection and several sinus infections, all of which my dr can find > no " cause " . I've never ever had such problems. Then also I noticed > my hair thinning, and a toenail fungal thing and dry eyes and nose > and skin and I could go on and on...I was beginning to think I was a > hypocondriac (no doubt I spelled that one wrong) but, come to find > I'm not alone in this and these are true symptoms. whew! what a > relief. Anyhow, I'm a mother of two daughters, grandma of two sweet > 3 year old boys and an artist...bronze sculpture. So that about > somes me up...I look forward to getting to know everyone. > Pixie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2002 Report Share Posted February 21, 2002 Hi Meg, Long time no hear, I am always thinking about you. Tell me how you are girl, is the hair loss still going on? What kind of healing regimen are you on? Are you doing any cleansing or taking vitamins, what about juicing? Let me know. I have some ideas for you that might be beneficial. Check out the links I added under bookmarks for phytopharmica and immunesupport.com those sites are great for buying some effective supplements that are beneficial and would help you to strengthen your body prior to surgery, I think that helped me allot, before my explant I really got my health on even ground with diet exercise and some vitamins, also tons of water, those things kept me from getting sicker while I awaited explant. Let me know what I can help you with, I always am thinking about you. Love ya ----- Original Message ----- From: " Katz " <rkatz1@...> < > Sent: Thursday, February 21, 2002 7:41 AM Subject: Re: hi everyone > Hello Pixie, Glad you joined the group. I've had silicone implants for 9 > years and saline for 10 months. I will be getting my implants removed too. > > ----- Original Message ----- > From: littlepixiebear <testerinkstudio@...> > < > > Sent: Thursday, February 21, 2002 9:12 AM > Subject: hi everyone > > > > Thanks for inviting me...here I am. for everyone here's a > > brief history: I'm...41...still hurts to say it out loud LOL! I've > > had saline implants for 20 years and am scheduled for explant on > > March 20th...only 4 weeks...I'm on a countdown! I have no idea what > > type they are, my original ps sent my operative report wich says > > nothing about the maker and when I called back he brushed me off and > > told me only that my " new " ps would know. > > All it said was VSOS 215(200) I assume that is the size. I've been > > fairly trouble free until this past year. And until I began > > researching, had no idea that the infections I keep getting could > > indeed be caused by my implants...one of which I think may be > > leaking, which is why I started researching in the first place. This > > past year alone I've suffered from 5 yeast infections, 1 lung > > infection and several sinus infections, all of which my dr can find > > no " cause " . I've never ever had such problems. Then also I noticed > > my hair thinning, and a toenail fungal thing and dry eyes and nose > > and skin and I could go on and on...I was beginning to think I was a > > hypocondriac (no doubt I spelled that one wrong) but, come to find > > I'm not alone in this and these are true symptoms. whew! what a > > relief. Anyhow, I'm a mother of two daughters, grandma of two sweet > > 3 year old boys and an artist...bronze sculpture. So that about > > somes me up...I look forward to getting to know everyone. > > Pixie > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2002 Report Share Posted February 21, 2002 Hi , thanks for asking about me. What type of juice drinks to you make. I'm thinking about getting a juicer. And I would appreciate any other advice on what supplements to take. Thanks ----- Original Message ----- From: Heer <idagirl@...> < > Sent: Thursday, February 21, 2002 10:32 AM Subject: Re: hi everyone > Hi Meg, > > Long time no hear, I am always thinking about you. Tell me how you are girl, > is the hair loss still going on? What kind of healing regimen are you on? > Are you doing any cleansing or taking vitamins, what about juicing? Let me > know. I have some ideas for you that might be beneficial. Check out the > links I added under bookmarks for phytopharmica and immunesupport.com those > sites are great for buying some effective supplements that are beneficial > and would help you to strengthen your body prior to surgery, I think that > helped me allot, before my explant I really got my health on even ground > with diet exercise and some vitamins, also tons of water, those things kept > me from getting sicker while I awaited explant. > > Let me know what I can help you with, I always am thinking about you. > > Love ya > > ----- Original Message ----- > From: " Katz " <rkatz1@...> > < > > Sent: Thursday, February 21, 2002 7:41 AM > Subject: Re: hi everyone > > > > Hello Pixie, Glad you joined the group. I've had silicone implants for 9 > > years and saline for 10 months. I will be getting my implants removed too. > > > > ----- Original Message ----- > > From: littlepixiebear <testerinkstudio@...> > > < > > > Sent: Thursday, February 21, 2002 9:12 AM > > Subject: hi everyone > > > > > > > Thanks for inviting me...here I am. for everyone here's a > > > brief history: I'm...41...still hurts to say it out loud LOL! I've > > > had saline implants for 20 years and am scheduled for explant on > > > March 20th...only 4 weeks...I'm on a countdown! I have no idea what > > > type they are, my original ps sent my operative report wich says > > > nothing about the maker and when I called back he brushed me off and > > > told me only that my " new " ps would know. > > > All it said was VSOS 215(200) I assume that is the size. I've been > > > fairly trouble free until this past year. And until I began > > > researching, had no idea that the infections I keep getting could > > > indeed be caused by my implants...one of which I think may be > > > leaking, which is why I started researching in the first place. This > > > past year alone I've suffered from 5 yeast infections, 1 lung > > > infection and several sinus infections, all of which my dr can find > > > no " cause " . I've never ever had such problems. Then also I noticed > > > my hair thinning, and a toenail fungal thing and dry eyes and nose > > > and skin and I could go on and on...I was beginning to think I was a > > > hypocondriac (no doubt I spelled that one wrong) but, come to find > > > I'm not alone in this and these are true symptoms. whew! what a > > > relief. Anyhow, I'm a mother of two daughters, grandma of two sweet > > > 3 year old boys and an artist...bronze sculpture. So that about > > > somes me up...I look forward to getting to know everyone. > > > Pixie > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2002 Report Share Posted February 21, 2002 I juice all kinds of stuff, right now here in frozen ice land it is harder to get some stuff, but I do the citrus like grapefruit and oranges,the biggest pain is peeling them all ha ha. I love apples too they are so sweet when juiced, I buy big bags of them all, carrots are excellent, and parsley is probably the most wonderful thing you can juice, it is full of vitamins. If you can get blueberries and grapes these are all great too, raspberries, etc. blueberries are full of antioxidants. As for your situation, esp with your hair loss, I am sure you already know that biotin is awesome, and that you should take an all natural multi vitamin with extra iron. Then I would look into MSM it is fantastic for muscles, joints, and also hair and nails. The other thing that is great for nails/hair is gelatin, that knox stuff that you buy in the grocery store, that stuff will really strengthen your hair and nails. I would never use store bought stuff on my hair either, I would use the stuff you get in salons or beauty supply stores, Joico is the one my sister always told me to use (she is a haristylist for 29 years now) she is awesome. I use the kerapro and K-pak shampoo and conditioner for deep treatments,these products are awesome. They also make some that are thickeners, have you tried these? Since you have saline implants(do you know what company they are) you could also be harboring bacteria like most of us seem to have been, so I would recommend using some of the natural anti viral anti bacterial supplements, like garlic, oregano, grape seed extract, and there are others in our files section. Go to immunesupport.com and search around for stuff, they have good selection and the prices are really reasonable. I also think that protein in the form of soy would be good for you, if you can get your hands on grass fed beef it is good too, I know allot of people on here are vegans and I agree it is great, however the protein and other nutrients such as B12 and other B vitamins may be lacking in vegan diets, so if you like meat and can get organic free range chickens and grass fed meat then by all means I think that would be awesome, salmon too, it is high in protein and omega fats that are good good good for you. Tell me what kind of implants do you have anyhow, are they mentor or McGhan? I know women with both that have problems but it seems at least on this site we all had McGhans. Again it seems the big problem is the valves on these implants, I suspect that the prefilled implants of long ago may have harbored less bacteria, though they were filled with toxic gels that bled and caused similarly bad problems in many women. It just seems that they do not have a good safe implant at this stage in time. This may be why even people with joint replacements tend to do better than implants, there is no fill ports, no gel bleed etc. It is all really starting to make sense to me, you don't need to be a brain surgeon to see that having a fill valve could be a problem and weak point on an implant. It makes me wonder why they approved the McGhans and Mentors and not the PIPS (prefilled saline implants) but I suspect it was more about money than anything else. I have never heard a women saying she was ill who had pips. But again I do have one story on this site, Jen who had major infection with pip implants, so once more, it just seems that implants are very difficult to predict when it comes to the health of the recipient. Just the thought that you can be harboring major bugs in these bags is really upseting, and looking back at my symptoms, I realize now it was as if I had the worse flu of my life all the time, never went away. Wow it is so obvious when you look back, hindsight is 20/20 isn't it. I cannot wait to get the full report, then I can deal with what I have appropriately, till then I will just continue with trial and error, it seems that I am doing so good almost all the time, that is how I know it was those implants, it is obvious. love, hugs, ----- Original Message ----- From: " Katz " <rkatz1@...> < > Sent: Thursday, February 21, 2002 12:41 PM Subject: Re: hi everyone > Hi , thanks for asking about me. What type of juice drinks to you > make. I'm thinking about getting a juicer. And I would appreciate any > other advice on what supplements to take. > Thanks > ----- Original Message ----- > From: Heer <idagirl@...> > < > > Sent: Thursday, February 21, 2002 10:32 AM > Subject: Re: hi everyone > > > > Hi Meg, > > > > Long time no hear, I am always thinking about you. Tell me how you are > girl, > > is the hair loss still going on? What kind of healing regimen are you on? > > Are you doing any cleansing or taking vitamins, what about juicing? Let me > > know. I have some ideas for you that might be beneficial. Check out the > > links I added under bookmarks for phytopharmica and immunesupport.com > those > > sites are great for buying some effective supplements that are beneficial > > and would help you to strengthen your body prior to surgery, I think that > > helped me allot, before my explant I really got my health on even ground > > with diet exercise and some vitamins, also tons of water, those things > kept > > me from getting sicker while I awaited explant. > > > > Let me know what I can help you with, I always am thinking about you. > > > > Love ya > > > > ----- Original Message ----- > > From: " Katz " <rkatz1@...> > > < > > > Sent: Thursday, February 21, 2002 7:41 AM > > Subject: Re: hi everyone > > > > > > > Hello Pixie, Glad you joined the group. I've had silicone implants for > 9 > > > years and saline for 10 months. I will be getting my implants removed > too. > > > > > > ----- Original Message ----- > > > From: littlepixiebear <testerinkstudio@...> > > > < > > > > Sent: Thursday, February 21, 2002 9:12 AM > > > Subject: hi everyone > > > > > > > > > > Thanks for inviting me...here I am. for everyone here's a > > > > brief history: I'm...41...still hurts to say it out loud LOL! I've > > > > had saline implants for 20 years and am scheduled for explant on > > > > March 20th...only 4 weeks...I'm on a countdown! I have no idea what > > > > type they are, my original ps sent my operative report wich says > > > > nothing about the maker and when I called back he brushed me off and > > > > told me only that my " new " ps would know. > > > > All it said was VSOS 215(200) I assume that is the size. I've been > > > > fairly trouble free until this past year. And until I began > > > > researching, had no idea that the infections I keep getting could > > > > indeed be caused by my implants...one of which I think may be > > > > leaking, which is why I started researching in the first place. This > > > > past year alone I've suffered from 5 yeast infections, 1 lung > > > > infection and several sinus infections, all of which my dr can find > > > > no " cause " . I've never ever had such problems. Then also I noticed > > > > my hair thinning, and a toenail fungal thing and dry eyes and nose > > > > and skin and I could go on and on...I was beginning to think I was a > > > > hypocondriac (no doubt I spelled that one wrong) but, come to find > > > > I'm not alone in this and these are true symptoms. whew! what a > > > > relief. Anyhow, I'm a mother of two daughters, grandma of two sweet > > > > 3 year old boys and an artist...bronze sculpture. So that about > > > > somes me up...I look forward to getting to know everyone. > > > > Pixie > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2002 Report Share Posted February 23, 2002 Hi Pixie: You'll be in good hands with Feng. Are you having a mastopexy too? Take care, -Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2002 Report Share Posted February 23, 2002 > Hi Pixie: > Congrats on your upcoming explant! Who is your surgeon? > > Take care, > -Marie Thanks -Marie, I'm going to Dr. Feng in Cleveland 31/2 weeks and counting Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2002 Report Share Posted February 23, 2002 Hi Pixie -Marie is right, Dr. Feng is good and she'll take excellent care of you. She is very understanding. good luck! ----- Original Message ----- From: perlesetlacet@... Sent: Saturday, February 23, 2002 12:08 AM Subject: Re: Re: hi everyone Hi Pixie:You'll be in good hands with Feng. Are you having a mastopexy too?Take care,-Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 , How are you doing???? Been missing you. So what meds are you on right now??? I remember you asking me questions. Kay ----- Original Message ----- From: " karen fonseca " <blackdogshaven@...> <Rheumatoid Arthritis >; <Rheumatoid Arthritis > Sent: Sunday, October 03, 2004 4:23 PM Subject: Hi everyone > > Just thought I would check in and say hi! Been very busy at work, so not > keeping up on the list too much. > > I hope all is well with everyone! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 Peek-a-boo, ...we see you! Hugs, Jacy ~I don't approve of political jokes; I've seen too many get elected. jacymail@...IM: jacygal - ICQ: 96949087www.geocities.com/mtn_rose Signature powered by Plaxo Want a signature like this? -----Original Message-----From: karen fonseca [mailto:blackdogshaven@...]Sent: Sunday, October 03, 2004 15:23Rheumatoid Arthritis ; Rheumatoid Arthritis Subject: Hi everyoneJust thought I would check in and say hi! Been very busy at work, so notkeeping up on the list too much.I hope all is well with everyone! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 welcome back to the group my name is Sherrie I haven't been a member of the group that long but wanted to say hi Sherrie--- In Rheumatoid Arthritis , " pretty24355 " <kfonseca@g...> wrote: > > I wanted to say Hi and let you all know I am glad this list is here. > I have been silent for some time, but that is because I was in denial > about my RA. Although I accepted the diagnosis, I had refused to > understand the severity of it. I guess I finally do now. Anyway, I > am glad to be back and so glad this list is here. > > Some may remember, I was diagosed with RA in May, although I am > certain I had it much longer than that. My tests were always > negative until the CCP (or whatever it is called protein test) was > done. My RA is considered the aggressive form. > > I went on antibiotic therapy in June and did great. Got off all the > Pred and all pain killers. But, in January it was like the > antibiotics just stopped working. My hands hurt all the time, so did > my toes and knees. My Rheumy told me that any drug can just stop > working with RA and strongly recommended I try Methtrexate. She said > the RA is in my ankles, fingers, toes, and knees. I thought it was > about time I went on a stronger medicine. > > I waited another month and decided she was right. When I went back > 2/05, my Rheumy told me since my Rheumy is aggressive and that I have > had RA for less than 3 years, I was eligible to participate in a > research study where they are trying combination drugs for early > aggressive RA to see if that gets/keeps the disease under control > better. The study is for 2 years and it just started. > > There are 4 groups in the study. > > One takes Methtrexate only > One takes MTX and Enbrel > One takes MTX and Sulfathalazine (sp) > One takes MTX and Hydrochloriqine (sp) > > No one knows except the study coordinator at Univ of Alabama. Your > Rheumy does not even know which drugs (other than the MTX that > everyone is on) that you are taking. If after 6 months you do not > improve, your drugs are changes to MTX and one of the other drugs you > are not on. All drugs are free for the 2 year period. The small > pain in the neck part of it is you take the shots, and all 4 drugs. > But, a couple of them are placebos. > > My Rheumy thinks I got Enbrel though because I get injection site > reactions--red rash--hot and a little swollen--each time I get my > weekly shot. Goes away in a day or so though. > > My first meds (MTX and maybe Enbrel ?) were 2/16. My pain has > diminished dramatically, but the swelling is still in my hands. I > could go on Pred, but prefer to wait it out. > > Anyway, I am very glad to be back posting to this list. I will keep > everyone informed of anything I learn during the course of the study. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 Thanks for the information on the clinical trial you are on and I look forward to hearing the results. I think one of the possible drugs is Hydroxychloroquine (Plaquenil) and that requires eye examinations every six months. Make sure you ask your rheumatologists if that is necessary for you. God bless. ----- Original Message ----- From: pretty24355 Rheumatoid Arthritis Sent: Tuesday, March 08, 2005 3:31 PM Subject: Hi everyone I wanted to say Hi and let you all know I am glad this list is here. I have been silent for some time, but that is because I was in denial about my RA. Although I accepted the diagnosis, I had refused to understand the severity of it. I guess I finally do now. Anyway, I am glad to be back and so glad this list is here.Some may remember, I was diagosed with RA in May, although I am certain I had it much longer than that. My tests were always negative until the CCP (or whatever it is called protein test) was done. My RA is considered the aggressive form.I went on antibiotic therapy in June and did great. Got off all the Pred and all pain killers. But, in January it was like the antibiotics just stopped working. My hands hurt all the time, so did my toes and knees. My Rheumy told me that any drug can just stop working with RA and strongly recommended I try Methtrexate. She said the RA is in my ankles, fingers, toes, and knees. I thought it was about time I went on a stronger medicine. I waited another month and decided she was right. When I went back 2/05, my Rheumy told me since my Rheumy is aggressive and that I have had RA for less than 3 years, I was eligible to participate in a research study where they are trying combination drugs for early aggressive RA to see if that gets/keeps the disease under control better. The study is for 2 years and it just started.There are 4 groups in the study. One takes Methtrexate onlyOne takes MTX and EnbrelOne takes MTX and Sulfathalazine (sp)One takes MTX and Hydrochloriqine (sp)No one knows except the study coordinator at Univ of Alabama. Your Rheumy does not even know which drugs (other than the MTX that everyone is on) that you are taking. If after 6 months you do not improve, your drugs are changes to MTX and one of the other drugs you are not on. All drugs are free for the 2 year period. The small pain in the neck part of it is you take the shots, and all 4 drugs. But, a couple of them are placebos.My Rheumy thinks I got Enbrel though because I get injection site reactions--red rash--hot and a little swollen--each time I get my weekly shot. Goes away in a day or so though.My first meds (MTX and maybe Enbrel ?) were 2/16. My pain has diminished dramatically, but the swelling is still in my hands. I could go on Pred, but prefer to wait it out. Anyway, I am very glad to be back posting to this list. I will keep everyone informed of anything I learn during the course of the study. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 Hi Harold, > Thanks for the information on the clinical trial you are on and I look forward to hearing the results. I think one of the possible drugs is Hydroxychloroquine (Plaquenil) and that requires eye examinations every six months. The study requires an eye exam upon entry into the study and then every 6 months thereafter. I very much appreciate your mentioning this thoug. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2005 Report Share Posted March 9, 2005 > > welcome back to the group my name is Sherrie I haven't been a > member of the group that long but wanted to say hi Sherrie--- Hi Sherrie, and thanks so much for the welcome. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2005 Report Share Posted March 10, 2005 , Thanks for your informative message. I know how hard it is to 'accept' your diagnosis - I still cant believe it - 2.5 years on! I still get really upset when I flare and am almost surprised that it is still there - denial!! Goodluck with your trial, I will be very interested in the results, we need all the research we can get into this debilitating illness - for all our sakes! Take care, suziescorn720 <scorn720@...> wrote: welcome back to the group my name is Sherrie I haven't been a member of the group that long but wanted to say hi Sherrie> > I wanted to say Hi and let you all know I am glad this list is here. > I have been silent for some time, but that is because I was in denial > about my RA. Although I accepted the diagnosis, I had refused to > understand the severity of it. I guess I finally do now. Anyway, I > am glad to be back and so glad this list is here.> > Some may remember, I was diagosed with RA in May, although I am > certain I had it much longer than that. My tests were always > negative until the CCP (or whatever it is called protein test) was > done. My RA is considered the aggressive form.> > I went on antibiotic therapy in June and did great. Got off all the > Pred and all pain killers. But, in January it was like the > antibiotics just stopped working. My hands hurt all the time, so did > my toes and knees. My Rheumy told me that any drug can just stop > working with RA and strongly recommended I try Methtrexate. She said > the RA is in my ankles, fingers, toes, and knees. I thought it was > about time I went on a stronger medicine. > > I waited another month and decided she was right. When I went back > 2/05, my Rheumy told me since my Rheumy is aggressive and that I have > had RA for less than 3 years, I was eligible to participate in a > research study where they are trying combination drugs for early > aggressive RA to see if that gets/keeps the disease under control > better. The study is for 2 years and it just started.> > There are 4 groups in the study. > > One takes Methtrexate only> One takes MTX and Enbrel> One takes MTX and Sulfathalazine (sp)> One takes MTX and Hydrochloriqine (sp)> > No one knows except the study coordinator at Univ of Alabama. Your > Rheumy does not even know which drugs (other than the MTX that > everyone is on) that you are taking. If after 6 months you do not > improve, your drugs are changes to MTX and one of the other drugs you > are not on. All drugs are free for the 2 year period. The small > pain in the neck part of it is you take the shots, and all 4 drugs. > But, a couple of them are placebos.> > My Rheumy thinks I got Enbrel though because I get injection site > reactions--red rash--hot and a little swollen--each time I get my > weekly shot. Goes away in a day or so though.> > My first meds (MTX and maybe Enbrel ?) were 2/16. My pain has > diminished dramatically, but the swelling is still in my hands. I > could go on Pred, but prefer to wait it out. > > Anyway, I am very glad to be back posting to this list. I will keep > everyone informed of anything I learn during the course of the study.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2005 Report Share Posted March 10, 2005 They are doing that same trial here but I have longstanding RA. That trial sounds great. All my joint damage occurred when the RA was not controlled in the first 12 months I had it. It's a long story and not uncommon. I went for an interview for a trial today for TMI-005 but do not know if I fit their criteria yet. The drug works by blocking tumor necrosis factor and alpha converting enzyme/matalloproteinase. Good luck with your trial? Is it called TEAR or something like that? Annette > > I wanted to say Hi and let you all know I am glad this list is here. > I have been silent for some time, but that is because I was in denial > about my RA. Although I accepted the diagnosis, I had refused to > understand the severity of it. I guess I finally do now. Anyway, I > am glad to be back and so glad this list is here. > > Some may remember, I was diagosed with RA in May, although I am > certain I had it much longer than that. My tests were always > negative until the CCP (or whatever it is called protein test) was > done. My RA is considered the aggressive form. > > I went on antibiotic therapy in June and did great. Got off all the > Pred and all pain killers. But, in January it was like the > antibiotics just stopped working. My hands hurt all the time, so did > my toes and knees. My Rheumy told me that any drug can just stop > working with RA and strongly recommended I try Methtrexate. She said > the RA is in my ankles, fingers, toes, and knees. I thought it was > about time I went on a stronger medicine. > > I waited another month and decided she was right. When I went back > 2/05, my Rheumy told me since my Rheumy is aggressive and that I have > had RA for less than 3 years, I was eligible to participate in a > research study where they are trying combination drugs for early > aggressive RA to see if that gets/keeps the disease under control > better. The study is for 2 years and it just started. > > There are 4 groups in the study. > > One takes Methtrexate only > One takes MTX and Enbrel > One takes MTX and Sulfathalazine (sp) > One takes MTX and Hydrochloriqine (sp) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2005 Report Share Posted March 10, 2005 Hi Annette, > They are doing that same trial here but I have longstanding RA. > That > trial sounds great.> I sure hope so. < All my joint damage occurred when the RA was > not controlled in the first 12 months I had it.> I am so sorry to hear that. But, I can sure see how it happened. Mine has been getting so bad so quickly too. > I went for an interview for a trial today for TMI-005 but do not know if I fit their criteria yet. The drug works by blocking tumor > necrosis factor and alpha converting enzyme/matalloproteinase.> I hope you do get in. Please let me know if you do. > Good luck with your trial? Is it called TEAR or something like that?> It is TEAR. Stands for T (not sure) E- Early A - Aggressive - R - Rheumatiod Arthritis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2005 Report Share Posted March 10, 2005 Hi Suzie, Thanks so much for your note and support. Will keep everyone posted. > Thanks for your informative message. I know how hard it is to 'accept' your diagnosis - I still cant believe it - 2.5 years on! I still get really upset when I flare and am almost surprised that it is still there - denial!! Goodluck with your trial, I will be very interested in the results, we need all the research we can get into this debilitating illness - for all our sakes! > > Take care, > suzie > > scorn720 <scorn720@y...> wrote: > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2005 Report Share Posted March 12, 2005 How do you feel when you wake up in the morning? I remember from that first year I would wake up and feel like I was walking on knives. After I finally got the right treatment I did well and have not been really bad since. It's just that it does not go away. One Dr said it " smoulders " . When I say not really bad I mean the fatigue is still evident but the real pain in the joints has not been evident much. Best case for you is you get it under control and it disappears. That could happen. Annette > > They are doing that same trial here but I have longstanding RA. > > That > trial sounds great.> > > I sure hope so. > > < All my joint damage occurred when the RA was > > not controlled in the first 12 months I had it.> > > I am so sorry to hear that. But, I can sure see how it happened. > Mine has been getting so bad so quickly too. > > > I went for an interview for a trial today for TMI-005 but do not > know if I fit their criteria yet. The drug works by blocking tumor > > necrosis factor and alpha converting enzyme/matalloproteinase.> > > I hope you do get in. Please let me know if you do. > > > Good luck with your trial? Is it called TEAR or something like > that?> > > It is TEAR. Stands for T (not sure) E- Early A - Aggressive - R - > Rheumatiod Arthritis. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2007 Report Share Posted July 7, 2007 Hello to everyone, I'm happy to say I'm back on line and very excited about what I'm creating in my life right now. The universe always affirms such wonderful blessings for me and I am endlessly grateful. I finally have the cold symptoms I sounded like I had for the last several months and I feel that perhaps after this process, my sinuses will clear immensely as does happen when one gets over a cold....I'm so excited about it. I'ts crazy!! I am manifesting everything and everyone I need for this step of my journey and as of next week, I start studying Certificate 4 in financial services (accounting) as part of my traineeship at work. I have instigated some positive changes in the workplace and am gaining more control and (finally) clarity in the situation. My grief has subsided to the point where I can actually think (almost) as sharply as I once did, and this alone has lifted my spirits no end. What a relief!! Several things occurred that all seemed to flick the switch at the same time, so it was almost like a major awakening and I feel vibrant and refreshed in my psyche, in my spirit. Thank you to everyone for your unconditional love and support, after 2 weeks without a computer, it is going to take some time to get through everyone's messages, but I want to take my time to digest everything. Love and Light to you all, I pray you are all fareing well Rhonda Quote Link to comment Share on other sites More sharing options...
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