Guest guest Posted October 11, 2001 Report Share Posted October 11, 2001 Hi, Just joined the list, I'm looking forward to getting some help with my thyroid. I was on Synthroid for over 13 years. My doctor switch me to Levoxyl because he said synthroid was taken off the market. He told me that Levoxyl is the same as synthroid, but, I felt different on it. I was tired, and irritable. I wanted him to put me on Armour, but he said that is being taken off the market as well. Is this true?? I felt I wasn't getting the help I wanted from him, so I went to a health store. I found raw thyroid tissue by Nutri-meds, I have been on it for almost 2 weeks. I am feeling better and have more energy, I even think my brain fog is lifting. Is there anyone else that takes this? I would like to learn more about it. After reading some of the side effects synthroid causes, like, severe depression, panic attacks, and kidney problems....I'm so glad I'm off of it!! Does anyone know of anymore side effects it has? Does it cause weight gain? I have been stuggling with depression too, now I wonder if it was from the synthroid? Does it take awhile for the weight to drop after starting the raw thyroid? Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2001 Report Share Posted October 11, 2001 In a message dated 10/10/2001 11:48:25 PM Pacific Daylight Time, blondiewolf2000@... writes: I was on Synthroid for over 13 years. My doctor switch me to Levoxyl because he said synthroid was taken off the market. He told me that Levoxyl is the same as synthroid, but, I felt different on it. I was tired, and irritable. I wanted him to put me on Armour, but he said that is being taken off the market as well. Is this true?? I felt I wasn't getting the help I wanted from him, so I went to a health store. I found raw thyroid tissue by Nutri-meds, I have been on it for almost 2 weeks. I am feeling better and have more energy, I even think my brain fog is lifting. Is there anyone else that takes this? I would like to learn more about it. After reading some of the side effects synthroid causes, like, severe depression, panic attacks, and kidney problems....I'm so glad I'm off of it!! Does anyone know of anymore side effects it has? Does it cause weight gain? , You can find out all about the current situation with any or all thyroid drugs at About.com, Thyroid Health. The specific page for the info about drugs is: http://thyroid.about.com/cs/thyroiddrugs/ The latest info is that Synthroid is still on the market, it's makers having gotten their much delayed test paperwork into the FDA just in time (after a year's delay, actually!). Armour is STILL very much ON the market! It has been the standard of treatment for decades before Synthroid was developed and many generations of people did well on it. Personally and IMO, all the scare stories and rumors of its instability, unavailability, etc., comes from the scumbag marketing techniques of the number one thyroid drug seller, Knoll Pharmaceutical. About the health food store alternative, I did the same thing for years when I couldn't find anyone to give me Armour and the Synthroid left me feeling very ill. But when I had hugely increased family and personal stress, basically, the year from hell, the health food store version was no longer strong enough and I went into an extended, severe hypo state. Only the last couple of months, after finding a doc who does the s/T3 protocol have I started to get my life and my vitality back! My advice, if you want it, is to make sure you listen to your body. Keep searching for a doctor who pays attention to YOU and not just your blood work! That is of prime importance! And let us know how you're doing! Good luck! in LA "We are each responsible for our own life--no other person is or even *can* be." Oprah Winfrey http://geocities.com/llheinsohn/index.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2001 Report Share Posted October 11, 2001 blondiewolf2000@... wrote: I was on Synthroid for over 13 years. My doctor switch me to Levoxyl because he said synthroid was taken off the market. *blink* Is that true? My aunt says she's still on it. Then again, my MIL said she heard Synthroid had been taken off the market a few years ago, but then it was put back on. Anyone know the current status for sure? I found raw thyroid tissue by Nutri-meds, I have been on it for almost 2 weeks. I am feeling better and have more energy, I even think my brain fog is lifting. Is there anyone else that takes this? I would like to learn more about it. Cool!! I take a supplement that has dessicated thyroid, L-Tyrosine, kelp, selenium, and zinc in it. I've noticed it helps with my sugar cravings, but I'm not sure what else (maybe it helped cure my foot fungus too??) I have been stuggling with depression too, now I wonder if it was from the synthroid? Does it take awhile for the weight to drop after starting the raw thyroid? What kind of depression? I got rid of my physical, lethargic depression by taking ECA supplements, which incidentally also helped me lose the last 10 lbs I'd been battling with. (A low-carb diet got rid of the majority of my post-baby weight, which is common in PCOS sufferers, which I'm beginning to think I may also suffer from -- but ECA helped me get back my "true body," which is the body I had in the beginning of high school.) However, I'm still struggling with mental, moody depression. I've added more complex carbs into my diet after reading _Potatoes, Not Prozac_ and it helps a little, but not a lot. I'm considering trying SAMe and will let you know if it works. -- Mindy ----------------------- "...that they may be one..." - Jesus, 17:22 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2001 Report Share Posted October 11, 2001 What is really weird too, is the pharmacies I called said they didn't know anything about it being taken off!! I don't know what is up? > > > I was on Synthroid for over 13 years. My doctor switch me to Levoxyl > > because he said synthroid was taken off the market. > > *blink* Is that true? My aunt says she's still on it. Then again, my > MIL said she heard Synthroid had been taken off the market a few years > ago, but then it was put back on. Anyone know the current status for > sure? > > > I found raw thyroid tissue by Nutri-meds, I have been on it > > for almost 2 weeks. I am feeling better and have more energy, I even > > think my brain fog is lifting. Is there anyone else that takes this? > > I would like to learn more about it. > > > > Cool!! I take a supplement that has dessicated thyroid, L-Tyrosine, > kelp, selenium, and zinc in it. I've noticed it helps with my sugar > cravings, but I'm not sure what else (maybe it helped cure my foot > fungus too??) > > > I have been stuggling with depression too, now I > > wonder if it was from the synthroid? Does it take awhile for the > > weight to drop after starting the raw thyroid? > > What kind of depression? I got rid of my physical, lethargic depression > by taking ECA supplements, which incidentally also helped me lose the > last 10 lbs I'd been battling with. (A low-carb diet got rid of the > majority of my post-baby weight, which is common in PCOS sufferers, > which I'm beginning to think I may also suffer from -- but ECA helped me > get back my " true body, " which is the body I had in the beginning of > high school.) > > However, I'm still struggling with mental, moody depression. I've added > more complex carbs into my diet after reading _Potatoes, Not Prozac_ and > it helps a little, but not a lot. I'm considering trying SAMe and will > let you know if it works. > > -- > Mindy > ----------------------- > " ...that they may be one... " > - Jesus, 17:22 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2001 Report Share Posted October 11, 2001 Mindy, What are ECA supplements? Regarding you foot fungus, Tea Tree Oil diluted on your toes/foot will get rid of the fungus. May take several weeks tho. Put on several times/day. Hope that helps. Happy Autumn!!! Love, Reneé and Jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2001 Report Share Posted October 11, 2001 oops! I forgot to answer your question on my depression. I have major depression. I am taking Wellbutrin and 10mg of paxil. What is ECA Supplement? > > > I was on Synthroid for over 13 years. My doctor switch me to Levoxyl > > because he said synthroid was taken off the market. > > *blink* Is that true? My aunt says she's still on it. Then again, my > MIL said she heard Synthroid had been taken off the market a few years > ago, but then it was put back on. Anyone know the current status for > sure? > > > I found raw thyroid tissue by Nutri-meds, I have been on it > > for almost 2 weeks. I am feeling better and have more energy, I even > > think my brain fog is lifting. Is there anyone else that takes this? > > I would like to learn more about it. > > > > Cool!! I take a supplement that has dessicated thyroid, L-Tyrosine, > kelp, selenium, and zinc in it. I've noticed it helps with my sugar > cravings, but I'm not sure what else (maybe it helped cure my foot > fungus too??) > > > I have been stuggling with depression too, now I > > wonder if it was from the synthroid? Does it take awhile for the > > weight to drop after starting the raw thyroid? > > What kind of depression? I got rid of my physical, lethargic depression > by taking ECA supplements, which incidentally also helped me lose the > last 10 lbs I'd been battling with. (A low-carb diet got rid of the > majority of my post-baby weight, which is common in PCOS sufferers, > which I'm beginning to think I may also suffer from -- but ECA helped me > get back my " true body, " which is the body I had in the beginning of > high school.) > > However, I'm still struggling with mental, moody depression. I've added > more complex carbs into my diet after reading _Potatoes, Not Prozac_ and > it helps a little, but not a lot. I'm considering trying SAMe and will > let you know if it works. > > -- > Mindy > ----------------------- > " ...that they may be one... " > - Jesus, 17:22 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2001 Report Share Posted October 12, 2001 Synthroid Information Center One-stop centralized information about thyroid drug Synthroid, including information on the lawsuits, new drug application, and more. http://thyroid.about.com/blsynthroid.htm > Hi, Just joined the list, I'm looking forward to getting some help > with my thyroid. > > I was on Synthroid for over 13 years. My doctor switch me to Levoxyl > because he said synthroid was taken off the market. He told me that > Levoxyl is the same as synthroid, but, I felt different on it. I was > tired, and irritable. I wanted him to put me on Armour, but he said > that is being taken off the market as well. Is this true?? I felt I > wasn't getting the help I wanted from him, so I went to a health > store. I found raw thyroid tissue by Nutri-meds, I have been on it > for almost 2 weeks. I am feeling better and have more energy, I even > think my brain fog is lifting. Is there anyone else that takes this? > I would like to learn more about it. > > After reading some of the side effects synthroid causes, like, severe > depression, panic attacks, and kidney problems....I'm so glad I'm off > of it!! Does anyone know of anymore side effects it has? Does it > cause weight gain? I have been stuggling with depression too, now I > wonder if it was from the synthroid? Does it take awhile for the > weight to drop after starting the raw thyroid? > > Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2001 Report Share Posted October 13, 2001 >My doctor switch me to Levoxyl because he said synthroid was taken off the market. Not true; not yet, anyway. >I wanted him to put me on Armour, but he said that is being taken off the market as well. Is this true?? No. Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2001 Report Share Posted October 13, 2001 Very true. Happy Autumn!!! Love, Reneé and Jerry >My doctor switch me to Levoxyl because he said synthroid was taken off the market. Not true; not yet, anyway. >I wanted him to put me on Armour, but he said that is being taken off the market as well. Is this true?? No. Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2001 Report Share Posted October 24, 2001 rja86@... wrote: Mindy, What are ECA supplements? Regarding you foot fungus, Tea Tree Oil diluted on your toes/foot will get rid of the fungus. May take several weeks tho. Put on several times/day. Hope that helps. ECA supplements = ephedrine-caffeine combo As for the tea tree oil, well I had tried that previously and it didn't work. (nothing worked!!) I think maybe all of the vitamins I've been taking have helped my immune system. Oh, and another thing I noticed is that yesterday I ingested more than the RDA of potassium, and temperature shot up to 98.7!!! WOW!! Usually I'm happy if it's at 98.1! I read that potassium is very helpful for the thyroid... -- Mindy ----------------------- "...that they may be one..." - Jesus, 17:22 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 Hi Debbie, Welcome to the group. As always we are saddened to have a member of the group but there are many who are here and able to give some advice and comfort. As for the comment about the medications all being sulfa drugs---well that was the old days---the newer treatments are so varied and different than the old ones. And sulfa drugs are not very prevalent any more. I am so sorry to hear of your daughters continued problems. Hives have not been a huge problem with our daughter but I know for others it has been. I am sure one will chime in soon. Have you seen a rheumatologist? I hope that you find some relief for your daughter soon. e, mom to 'joe' 22 poly/lupus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 Hi- Welcome to the group, but I'm sorry you have to be apart of it... I hope you are able to continue to find answers for your daughter. My daughter does not deal with hives, but has Psoriatic arthritis so skin issues are something we deal with a little too, however it hasn't been bad. For what it's worth, I would highly suggest that you look for a pediatric rheumatologist if you have not yet seen one. From my own experience and that of others, I have found there is a huge difference between how pediatric patients and adult patients are treated, and alot of that has to do with having a good doctor. I hope you are able to fine a successful treatment. Not that any of us want to be here, but it does help knowing we are not alone. Good Luck. - mom to Sophia, 2 1/2, Psoriatic Arthritis From: debjreich87@... <debjreich87@...> Subject: Hi...new here Date: Friday, April 3, 2009, 1:27 PM Hi, my name is Debbie, and My 11 year old daughter () was diagnosed with Juvenile Arthritis this past month. After seeing doctor after doctor for the last 6 months. We ended up at the University of Chicago. All the doctors have been stumped including this doctor. It all started with her having hives...uncontrolla ble hives. A couple weeks later her left leg swelled and one finger on her left hand. Shortly after that her ankles and wrist started hurting, too. At the beginning she was on so much allergy medicine that she slept all the time. We had several emergency visits and also urgent care visits. Also, she is all of a sudden allergic to any over the counter meds for pain except Tylenol. She still has hives 6 months later here, but we are able to 'control' them with Zyrtec. (In the beginning Zyrtec did not help either.) She is not on anything for the pain, because she swells up so bad with anything having to do with aspirin. Our doctor says that most of the meds for arthritis have sulfa in them, and we think she is allergic to sulfa. She had been on Bactrim since the time she was four years old for kidney reflux. At first we thought that was what was causing her the hives. We switched antibiotics. ...and now I have completely taken her off of them, and I have been giving her pro biotics. We have an appointment at the end of April for her to get injections into her achy joints. (consultation first) The doctor has also suggested therapy. I guess that is our story. To be honest ...I wish I were not here. I just want it to go away. Though, I am thankful this forum is here. I have no idea if we are doing anything right, and I really do not know what to expect or where to go from here.. The biggest question I have is does anyone deal with hives too? I am afraid of the medications for her. She has been on so many dealing with the hives. Thank you for reading. It feels good to 'talk' about it with moms who understand. Hugs to all who are also dealing with this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 Hi e, Thank you for your response. It is encouraging to know that sulfa drugs are not the only answer. We are seeing her rheumatologist again at the end of April. We are also getting her into physical therapy. At this point we haven't done much for her symptoms, not that we haven't tried. I think what has thrown doctors off is she has not tested positive for RA, but she has all the symptoms. Thanks again! Debbie ________________________________ From: bound for london <boundforlondon@...> Sent: Tuesday, April 7, 2009 1:06:40 AM Subject: Re: Hi...new here Hi Debbie, Welcome to the group. As always we are saddened to have a member of the group but there are many who are here and able to give some advice and comfort. As for the comment about the medications all being sulfa drugs---well that was the old days---the newer treatments are so varied and different than the old ones. And sulfa drugs are not very prevalent any more. I am so sorry to hear of your daughters continued problems. Hives have not been a huge problem with our daughter but I know for others it has been. I am sure one will chime in soon. Have you seen a rheumatologist? I hope that you find some relief for your daughter soon. e, mom to 'joe' 22 poly/lupus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 Thank you, , for the welcome. After months of seeing different doctors, we recently did find a pediatric rheumatologist. She seems very helpful and has even called us at home to talk about our little girl. I am hoping she will be able to help her. Your little girl is 2 and half with arthritis? Am I reading that right?? She is so little! Debbie ________________________________ From: Stavos <ktstavos7@...> Sent: Tuesday, April 7, 2009 8:31:59 AM Subject: Re: Hi...new here Hi- Welcome to the group, but I'm sorry you have to be apart of it... I hope you are able to continue to find answers for your daughter. My daughter does not deal with hives, but has Psoriatic arthritis so skin issues are something we deal with a little too, however it hasn't been bad. For what it's worth, I would highly suggest that you look for a pediatric rheumatologist if you have not yet seen one. From my own experience and that of others, I have found there is a huge difference between how pediatric patients and adult patients are treated, and alot of that has to do with having a good doctor. I hope you are able to fine a successful treatment. Not that any of us want to be here, but it does help knowing we are not alone. Good Luck. - mom to Sophia, 2 1/2, Psoriatic Arthritis From: debjreich87@ sbcglobal. net <debjreich87@ sbcglobal. net> Subject: Hi...new here @group s.com Date: Friday, April 3, 2009, 1:27 PM Hi, my name is Debbie, and My 11 year old daughter () was diagnosed with Juvenile Arthritis this past month. After seeing doctor after doctor for the last 6 months. We ended up at the University of Chicago. All the doctors have been stumped including this doctor. It all started with her having hives...uncontrolla ble hives. A couple weeks later her left leg swelled and one finger on her left hand. Shortly after that her ankles and wrist started hurting, too. At the beginning she was on so much allergy medicine that she slept all the time. We had several emergency visits and also urgent care visits. Also, she is all of a sudden allergic to any over the counter meds for pain except Tylenol. She still has hives 6 months later here, but we are able to 'control' them with Zyrtec. (In the beginning Zyrtec did not help either.) She is not on anything for the pain, because she swells up so bad with anything having to do with aspirin. Our doctor says that most of the meds for arthritis have sulfa in them, and we think she is allergic to sulfa. She had been on Bactrim since the time she was four years old for kidney reflux. At first we thought that was what was causing her the hives. We switched antibiotics. ...and now I have completely taken her off of them, and I have been giving her pro biotics. We have an appointment at the end of April for her to get injections into her achy joints. (consultation first) The doctor has also suggested therapy. I guess that is our story. To be honest ...I wish I were not here. I just want it to go away. Though, I am thankful this forum is here. I have no idea if we are doing anything right, and I really do not know what to expect or where to go from here.. The biggest question I have is does anyone deal with hives too? I am afraid of the medications for her. She has been on so many dealing with the hives. Thank you for reading. It feels good to 'talk' about it with moms who understand. Hugs to all who are also dealing with this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 Hi Debbie and welcome. I'm sorry your daughter is going through all of this. Are you seeing a ped rheumy through the University of Chicago? That is where my son's rheumys were from and the care was excellent. Very current. His rheumys have both moved on to other places by now. I am curious which rheumy you may be seeing. My son saw the rheumy at Hope Children's. The drs from U of C had clinic hours there. How awful to be so allergic. Have you had allergy testing done? When was first diagnosed the rheumy stated that kids with these diseases have hyper immune systems and having multiple auto immune diseases like allergies, asthma, arthritis, etc is not that unusual. I hope that your daughter finds some relief soon. You have found a great resource in this list, lots of info and support. Michele ( 21, spondy) ________________________________ From: [mailto: ] On Behalf Of debjreich87@... Sent: Friday, April 03, 2009 1:28 PM Subject: Hi...new here Hi, my name is Debbie, and My 11 year old daughter () was diagnosed with Juvenile Arthritis this past month. After seeing doctor after doctor for the last 6 months. We ended up at the University of Chicago. All the doctors have been stumped including this doctor. It all started with her having hives...uncontrollable hives. A couple weeks later her left leg swelled and one finger on her left hand. Shortly after that her ankles and wrist started hurting, too. At the beginning she was on so much allergy medicine that she slept all the time. We had several emergency visits and also urgent care visits. Also, she is all of a sudden allergic to any over the counter meds for pain except Tylenol. She still has hives 6 months later here, but we are able to 'control' them with Zyrtec. (In the beginning Zyrtec did not help either.) She is not on anything for the pain, because she swells up so bad with anything having to do with aspirin. Our doctor says that most of the meds for arthritis have sulfa in them, and we think she is allergic to sulfa. She had been on Bactrim since the time she was four years old for kidney reflux. At first we thought that was what was causing her the hives. We switched antibiotics....and now I have completely taken her off of them, and I have been giving her pro biotics. We have an appointment at the end of April for her to get injections into her achy joints. (consultation first) The doctor has also suggested therapy. I guess that is our story. To be honest ...I wish I were not here. I just want it to go away. Though, I am thankful this forum is here. I have no idea if we are doing anything right, and I really do not know what to expect or where to go from here.. The biggest question I have is does anyone deal with hives too? I am afraid of the medications for her. She has been on so many dealing with the hives. Thank you for reading. It feels good to 'talk' about it with moms who understand. Hugs to all who are also dealing with this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Hi Michele, Yes, we did have her tested for any allergies, and it all came back negative. Although, to be honest..I keep hoping that somehow I will be able to figure it out on my own. I am praying that something is causing this, and I will be able to stop it. The doctor we're seeing is Wagner-Weiner. We just started seeing her. I am impressed that she has called us at home twice now. She seems very caring, and really likes her. Thank you so much for replying! It means a lot! ________________________________ From: " Tepper, Michele " <MTepper@...> Sent: Tuesday, April 7, 2009 8:23:01 AM Subject: RE: Hi...new here Hi Debbie and welcome. I'm sorry your daughter is going through all of this. Are you seeing a ped rheumy through the University of Chicago? That is where my son's rheumys were from and the care was excellent. Very current. His rheumys have both moved on to other places by now. I am curious which rheumy you may be seeing. My son saw the rheumy at Hope Children's. The drs from U of C had clinic hours there. How awful to be so allergic. Have you had allergy testing done? When was first diagnosed the rheumy stated that kids with these diseases have hyper immune systems and having multiple auto immune diseases like allergies, asthma, arthritis, etc is not that unusual. I hope that your daughter finds some relief soon. You have found a great resource in this list, lots of info and support. Michele ( 21, spondy) ____________ _________ _________ __ From: @group s.com [mailto: @group s.com] On Behalf Of debjreich87@ sbcglobal. net Sent: Friday, April 03, 2009 1:28 PM @group s.com Subject: Hi...new here Hi, my name is Debbie, and My 11 year old daughter () was diagnosed with Juvenile Arthritis this past month. After seeing doctor after doctor for the last 6 months. We ended up at the University of Chicago. All the doctors have been stumped including this doctor. It all started with her having hives...uncontrolla ble hives. A couple weeks later her left leg swelled and one finger on her left hand. Shortly after that her ankles and wrist started hurting, too. At the beginning she was on so much allergy medicine that she slept all the time. We had several emergency visits and also urgent care visits. Also, she is all of a sudden allergic to any over the counter meds for pain except Tylenol. She still has hives 6 months later here, but we are able to 'control' them with Zyrtec. (In the beginning Zyrtec did not help either.) She is not on anything for the pain, because she swells up so bad with anything having to do with aspirin. Our doctor says that most of the meds for arthritis have sulfa in them, and we think she is allergic to sulfa. She had been on Bactrim since the time she was four years old for kidney reflux. At first we thought that was what was causing her the hives. We switched antibiotics. ...and now I have completely taken her off of them, and I have been giving her pro biotics. We have an appointment at the end of April for her to get injections into her achy joints. (consultation first) The doctor has also suggested therapy. I guess that is our story. To be honest ...I wish I were not here. I just want it to go away. Though, I am thankful this forum is here. I have no idea if we are doing anything right, and I really do not know what to expect or where to go from here.. The biggest question I have is does anyone deal with hives too? I am afraid of the medications for her. She has been on so many dealing with the hives. Thank you for reading. It feels good to 'talk' about it with moms who understand. Hugs to all who are also dealing with this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Hi Michele, Yes, we did have her tested for any allergies, and it all came back negative. Although, to be honest..I keep hoping that somehow I will be able to figure it out on my own. I am praying that something is causing this, and I will be able to stop it. The doctor we're seeing is Wagner-Weiner. We just started seeing her. I am impressed that she has called us at home twice now. She seems very caring, and really likes her. Thank you so much for replying! It means a lot! ________________________________ From: " Tepper, Michele " <MTepper@...> Sent: Tuesday, April 7, 2009 8:23:01 AM Subject: RE: Hi...new here Hi Debbie and welcome. I'm sorry your daughter is going through all of this. Are you seeing a ped rheumy through the University of Chicago? That is where my son's rheumys were from and the care was excellent. Very current. His rheumys have both moved on to other places by now. I am curious which rheumy you may be seeing. My son saw the rheumy at Hope Children's. The drs from U of C had clinic hours there. How awful to be so allergic. Have you had allergy testing done? When was first diagnosed the rheumy stated that kids with these diseases have hyper immune systems and having multiple auto immune diseases like allergies, asthma, arthritis, etc is not that unusual. I hope that your daughter finds some relief soon. You have found a great resource in this list, lots of info and support. Michele ( 21, spondy) ____________ _________ _________ __ From: @group s.com [mailto: @group s.com] On Behalf Of debjreich87@ sbcglobal. net Sent: Friday, April 03, 2009 1:28 PM @group s.com Subject: Hi...new here Hi, my name is Debbie, and My 11 year old daughter () was diagnosed with Juvenile Arthritis this past month. After seeing doctor after doctor for the last 6 months. We ended up at the University of Chicago. All the doctors have been stumped including this doctor. It all started with her having hives...uncontrolla ble hives. A couple weeks later her left leg swelled and one finger on her left hand. Shortly after that her ankles and wrist started hurting, too. At the beginning she was on so much allergy medicine that she slept all the time. We had several emergency visits and also urgent care visits. Also, she is all of a sudden allergic to any over the counter meds for pain except Tylenol. She still has hives 6 months later here, but we are able to 'control' them with Zyrtec. (In the beginning Zyrtec did not help either.) She is not on anything for the pain, because she swells up so bad with anything having to do with aspirin. Our doctor says that most of the meds for arthritis have sulfa in them, and we think she is allergic to sulfa. She had been on Bactrim since the time she was four years old for kidney reflux. At first we thought that was what was causing her the hives. We switched antibiotics. ...and now I have completely taken her off of them, and I have been giving her pro biotics. We have an appointment at the end of April for her to get injections into her achy joints. (consultation first) The doctor has also suggested therapy. I guess that is our story. To be honest ...I wish I were not here. I just want it to go away. Though, I am thankful this forum is here. I have no idea if we are doing anything right, and I really do not know what to expect or where to go from here.. The biggest question I have is does anyone deal with hives too? I am afraid of the medications for her. She has been on so many dealing with the hives. Thank you for reading. It feels good to 'talk' about it with moms who understand. Hugs to all who are also dealing with this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Hello Debbie, and welcome. I'm sorry you have found a need for this forum, but at the same time I am glad you have found our group where you can ask questions and hopefully find support as you seek answers for . I have a daughter who is now 18, was officially diagnosed at 15, but in retrospect, have good reason to believe her arthritis began when she was about 5. She too suffers with hives; she also has cholinergic uticaria, which simply means she gets hives from temperature changes, such as a warm shower (which makes soaking in a warm tub not a good choice for her joints...). Her drs are also stumped as to the causes of her hives (except a few meds), so they simply treat, with Zyrtec and Benadryl. She does get localized hives from her weekly infusion, and horribly itchy from her pain meds, but she takes extra Benadryl and she keeps a close watch and it has not progressed to a bad point - mostly just very uncomfortable. I am sorry is having such a difficult time; it is often very discouraging at the beginning of diagnosis, as it takes the doctors a bit to get a good grasp of your child (since each child with jra is so unique) and work out the best treatment plan for them; I hope the drs quickly come up with some answers and a treatment plan to give her stabilization and relief. I understand this must be a stressful time for you as 's mom...please do not hesitate to continue to ask questions, share experiences, frustrations, whatever...we are all here to support you. Hugs, (, 18, poly, pidd) From: debjreich87@... <debjreich87@...> Subject: Hi...new here Date: Friday, April 3, 2009, 11:27 AM Hi, my name is Debbie, and My 11 year old daughter () was diagnosed with Juvenile Arthritis this past month. After seeing doctor after doctor for the last 6 months. We ended up at the University of Chicago. All the doctors have been stumped including this doctor. It all started with her having hives...uncontrolla ble hives. A couple weeks later her left leg swelled and one finger on her left hand. Shortly after that her ankles and wrist started hurting, too. At the beginning she was on so much allergy medicine that she slept all the time. We had several emergency visits and also urgent care visits. Also, she is all of a sudden allergic to any over the counter meds for pain except Tylenol. She still has hives 6 months later here, but we are able to 'control' them with Zyrtec. (In the beginning Zyrtec did not help either.) She is not on anything for the pain, because she swells up so bad with anything having to do with aspirin. Our doctor says that most of the meds for arthritis have sulfa in them, and we think she is allergic to sulfa. She had been on Bactrim since the time she was four years old for kidney reflux. At first we thought that was what was causing her the hives. We switched antibiotics. ...and now I have completely taken her off of them, and I have been giving her pro biotics. We have an appointment at the end of April for her to get injections into her achy joints. (consultation first) The doctor has also suggested therapy. I guess that is our story. To be honest ...I wish I were not here. I just want it to go away. Though, I am thankful this forum is here. I have no idea if we are doing anything right, and I really do not know what to expect or where to go from here.. The biggest question I have is does anyone deal with hives too? I am afraid of the medications for her. She has been on so many dealing with the hives. Thank you for reading. It feels good to 'talk' about it with moms who understand. Hugs to all who are also dealing with this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Hello Debbie, and welcome. I'm sorry you have found a need for this forum, but at the same time I am glad you have found our group where you can ask questions and hopefully find support as you seek answers for . I have a daughter who is now 18, was officially diagnosed at 15, but in retrospect, have good reason to believe her arthritis began when she was about 5. She too suffers with hives; she also has cholinergic uticaria, which simply means she gets hives from temperature changes, such as a warm shower (which makes soaking in a warm tub not a good choice for her joints...). Her drs are also stumped as to the causes of her hives (except a few meds), so they simply treat, with Zyrtec and Benadryl. She does get localized hives from her weekly infusion, and horribly itchy from her pain meds, but she takes extra Benadryl and she keeps a close watch and it has not progressed to a bad point - mostly just very uncomfortable. I am sorry is having such a difficult time; it is often very discouraging at the beginning of diagnosis, as it takes the doctors a bit to get a good grasp of your child (since each child with jra is so unique) and work out the best treatment plan for them; I hope the drs quickly come up with some answers and a treatment plan to give her stabilization and relief. I understand this must be a stressful time for you as 's mom...please do not hesitate to continue to ask questions, share experiences, frustrations, whatever...we are all here to support you. Hugs, (, 18, poly, pidd) From: debjreich87@... <debjreich87@...> Subject: Hi...new here Date: Friday, April 3, 2009, 11:27 AM Hi, my name is Debbie, and My 11 year old daughter () was diagnosed with Juvenile Arthritis this past month. After seeing doctor after doctor for the last 6 months. We ended up at the University of Chicago. All the doctors have been stumped including this doctor. It all started with her having hives...uncontrolla ble hives. A couple weeks later her left leg swelled and one finger on her left hand. Shortly after that her ankles and wrist started hurting, too. At the beginning she was on so much allergy medicine that she slept all the time. We had several emergency visits and also urgent care visits. Also, she is all of a sudden allergic to any over the counter meds for pain except Tylenol. She still has hives 6 months later here, but we are able to 'control' them with Zyrtec. (In the beginning Zyrtec did not help either.) She is not on anything for the pain, because she swells up so bad with anything having to do with aspirin. Our doctor says that most of the meds for arthritis have sulfa in them, and we think she is allergic to sulfa. She had been on Bactrim since the time she was four years old for kidney reflux. At first we thought that was what was causing her the hives. We switched antibiotics. ...and now I have completely taken her off of them, and I have been giving her pro biotics. We have an appointment at the end of April for her to get injections into her achy joints. (consultation first) The doctor has also suggested therapy. I guess that is our story. To be honest ...I wish I were not here. I just want it to go away. Though, I am thankful this forum is here. I have no idea if we are doing anything right, and I really do not know what to expect or where to go from here.. The biggest question I have is does anyone deal with hives too? I am afraid of the medications for her. She has been on so many dealing with the hives. Thank you for reading. It feels good to 'talk' about it with moms who understand. Hugs to all who are also dealing with this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 I am sorry for your experience. My daughter had hives recently from Bactrim. It was miserable. I pray for relief there. I hope she can control of pain too. Aubrey my 13 year old had injections and did well with them so have peace with that. You are not alone. We are here for you. Terri and Aubrey 13 with Jra and Uvietis Hi...new here Date: Friday, April 3, 2009, 11:27 AM Hi, my name is Debbie, and My 11 year old daughter () was diagnosed with Juvenile Arthritis this past month. After seeing doctor after doctor for the last 6 months. We ended up at the University of Chicago. All the doctors have been stumped including this doctor. It all started with her having hives...uncontrolla ble hives. A couple weeks later her left leg swelled and one finger on her left hand. Shortly after that her ankles and wrist started hurting, too. At the beginning she was on so much allergy medicine that she slept all the time. We had several emergency visits and also urgent care visits. Also, she is all of a sudden allergic to any over the counter meds for pain except Tylenol. She still has hives 6 months later here, but we are able to 'control' them with Zyrtec. (In the beginning Zyrtec did not help either.) She is not on anything for the pain, because she swells up so bad with anything having to do with aspirin. Our doctor says that most of the meds for arthritis have sulfa in them, and we think she is allergic to sulfa. She had been on Bactrim since the time she was four years old for kidney reflux. At first we thought that was what was causing her the hives. We switched antibiotics. ...and now I have completely taken her off of them, and I have been giving her pro biotics. We have an appointment at the end of April for her to get injections into her achy joints. (consultation first) The doctor has also suggested therapy. I guess that is our story. To be honest ...I wish I were not here. I just want it to go away. Though, I am thankful this forum is here. I have no idea if we are doing anything right, and I really do not know what to expect or where to go from here.. The biggest question I have is does anyone deal with hives too? I am afraid of the medications for her. She has been on so many dealing with the hives. Thank you for reading. It feels good to 'talk' about it with moms who understand. Hugs to all who are also dealing with this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 I am sorry for your experience. My daughter had hives recently from Bactrim. It was miserable. I pray for relief there. I hope she can control of pain too. Aubrey my 13 year old had injections and did well with them so have peace with that. You are not alone. We are here for you. Terri and Aubrey 13 with Jra and Uvietis Hi...new here Date: Friday, April 3, 2009, 11:27 AM Hi, my name is Debbie, and My 11 year old daughter () was diagnosed with Juvenile Arthritis this past month. After seeing doctor after doctor for the last 6 months. We ended up at the University of Chicago. All the doctors have been stumped including this doctor. It all started with her having hives...uncontrolla ble hives. A couple weeks later her left leg swelled and one finger on her left hand. Shortly after that her ankles and wrist started hurting, too. At the beginning she was on so much allergy medicine that she slept all the time. We had several emergency visits and also urgent care visits. Also, she is all of a sudden allergic to any over the counter meds for pain except Tylenol. She still has hives 6 months later here, but we are able to 'control' them with Zyrtec. (In the beginning Zyrtec did not help either.) She is not on anything for the pain, because she swells up so bad with anything having to do with aspirin. Our doctor says that most of the meds for arthritis have sulfa in them, and we think she is allergic to sulfa. She had been on Bactrim since the time she was four years old for kidney reflux. At first we thought that was what was causing her the hives. We switched antibiotics. ...and now I have completely taken her off of them, and I have been giving her pro biotics. We have an appointment at the end of April for her to get injections into her achy joints. (consultation first) The doctor has also suggested therapy. I guess that is our story. To be honest ...I wish I were not here. I just want it to go away. Though, I am thankful this forum is here. I have no idea if we are doing anything right, and I really do not know what to expect or where to go from here.. The biggest question I have is does anyone deal with hives too? I am afraid of the medications for her. She has been on so many dealing with the hives. Thank you for reading. It feels good to 'talk' about it with moms who understand. Hugs to all who are also dealing with this. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.