Guest guest Posted February 11, 2001 Report Share Posted February 11, 2001 Hi Jacquie, and welcome to the group. There are nearly four hundred of us on the list, all ready and willing to help! Sorry to hear about your daughter. It's one thing being a grown-up with this condition, but quite another being young. There are many members here with CU and Angioedema, seemingly truly idiopathic. It would be useful to hear more about your daughter's symptoms. It is possible for CU to be triggered by infection, such as infected root canals and bacterial infections, but there are many other possible causes as well. Hearing more about your daughter's symptoms might point us in the right direction. What medication is she taking now? And what have her doctors said? Hearing stories about 'useless' doctors is common here and most of us have to do the work to see any kind of improvement, but we're a pretty knowledgeable bunch and we have had results!! In any case, a big welcome to the group and look forward to hearing from you again soon. Best regards Edinburgh CU and Angioedema > does any-one else have CU and Angioedema which are trully > idiopathic. My daughter does and we are going crazy. The pain and > discomfort are one thing, but trying to convince the authorities and > doctors of this is driving us nuts. She had massive doses of > prednisolone for over a year and at thirteen she put on 52 pounds and > grew facial hair. The steroids did not even relieve her symptoms,not > even a little bit. If any-one else has this , even remotely similar > to my daughter, please get back to us. I am hoping that if I can > provide overwhelming proof that she is not unique it will help her > deal with it better. > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > If you do wish to unsubscribe then you can click on the following link: > <mailto:urticaria-unsubscribeegroups> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. > > We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. > > Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2001 Report Share Posted February 11, 2001 Dear Jacquie, My name is Jacquie also!! It is very unusual to find someone with the same spelling. It is even more amazing to find someone on this list with the same problem. Tell your daughter I have truly idiopathic chronic urticaria with angioedema. I flunked the antihistimine route and have been on prednisone since last fall. I am tapering and am praying I am in remission. I take 180 mg of allegra everyday and am down to 3mg pred every other day. I found I could not go completely off the antihistimine. I stopped the zyrtec about 3 weeks ago and although I didn't get hives I got terribly itchy in all those places. I know how a person can feel very alone with this disease. Mine is auto-immune. I think many of us are in the same boat. This icus site is a God send. I thank Him for this opportunity to share with others our trials and triumphs. I pray your daughter is soon triumphant! Warm regards, Jacquie PS I, too, gained alot of weight. Last month I started working out at a gym 3 to 5 times a week. I also don't have cookies in the house anymore. I have lost about 6-7 lbs. But I have a long long way to go. For a teenager the weight gain is even more de-moralizing. I hope she can find a way to start back down the scale. God Bless. CU and Angioedema > does any-one else have CU and Angioedema which are trully > idiopathic. My daughter does and we are going crazy. The pain and > discomfort are one thing, but trying to convince the authorities and > doctors of this is driving us nuts. She had massive doses of > prednisolone for over a year and at thirteen she put on 52 pounds and > grew facial hair. The steroids did not even relieve her symptoms,not > even a little bit. If any-one else has this , even remotely similar > to my daughter, please get back to us. I am hoping that if I can > provide overwhelming proof that she is not unique it will help her > deal with it better. > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > If you do wish to unsubscribe then you can click on the following link: > <mailto:urticaria-unsubscribeegroups> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. > > We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. > > Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2001 Report Share Posted February 11, 2001 Hi Jacquie~My daughter Alena does have CU and angioedema. She is 27 months old and we have tried every antihistimine and steriods. I have refused to put her back on steriods because they didn't help and I hated the side effects for her. She had two fractures in less than one year. I just took her to a dermatologist at the Cleveland Clinic that I really liked and is very supportive and trying to get to the bottom of this. We are currently waiting blood test results. I know its frustrating and it is not fair. I would watch Alena when she was only a few months old hurting so badly that I could not even hold her. Or her skin would be so hot and full of hives clothes were painful. My daughter certainly has taught me a lot about tolerance. She endures a lot and always smiles. I wish you the best and my best advice is don't accept " I don't know " as an answer. I just won't settle for that even if it takes me years to get to the bottom of this mess. Good Luck~ CU and Angioedema > does any-one else have CU and Angioedema which are trully > idiopathic. My daughter does and we are going crazy. The pain and > discomfort are one thing, but trying to convince the authorities and > doctors of this is driving us nuts. She had massive doses of > prednisolone for over a year and at thirteen she put on 52 pounds and > grew facial hair. The steroids did not even relieve her symptoms,not > even a little bit. If any-one else has this , even remotely similar > to my daughter, please get back to us. I am hoping that if I can > provide overwhelming proof that she is not unique it will help her > deal with it better. > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > If you do wish to unsubscribe then you can click on the following link: > <mailto:urticaria-unsubscribeegroups> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. > > We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. > > Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2001 Report Share Posted February 11, 2001 Many thanks to every-one for your replies. My daughter will read these when she comes in ( good day - out with friends). Bit of history. She came off the pred and is now 1 yr older and almost 14 pounds underweight, because she was so sickened by the abuse she got at school that she stopped eating normally. We have had a shower fitted and bought a dishwasher, I double rinse all my laundry and we eat only fresh, additive free food. She has had many tests, and many diets, including a liquid feed through a nasal-gastro tube with no easing of her symptoms. We applied for DLA for her and were awarded the maximum ammount for personal care ( a benefit for people with illnesses or disabilities), then her consultant wrote to the benefits people and told them that her condition has no effect on her ability to wash, dress, walk or anything, so the benefit was stopped. I am getting back to them with a pile of letters from friends etc who have helped me cope with the worst and best of it all. Without my friends, Janice mostly and my Mum I would be in a mental hospital by now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2001 Report Share Posted February 12, 2001 Hi I have CU and the swelling that goes with it. I have been on so many meds. Sometimes it goes away for a while the longest 4 weeks and it comes back. It is a shame she has to be on the Predisone. I try to stay away from it as much as possible. Have you had her thyroid tested. Alot of us have under or over active thyroids. I do believe it has something to do with it. Tell her it has to get better. I have to believe that. Please keep in touch. Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2001 Report Share Posted February 12, 2001 --- thanks for the reply, the name is jacquie and i am afraid the hands go quicker than the brain so i never remember to use capitals. has been tested every few months for 5- 6 years and the results are always negative, other than bloods which show she is having a mild allergic reaction to something. It might be easier if we knew what to avoid, but life in a bubble would not be much fun. A cold, headache, sore throat, bad day, periods, little sister anything can bring out her CU and Angio. but last night was a good night and this morning was not too bad In urticaria@y..., FiveAlive76@a... wrote: > Hi > I have CU and the swelling that goes with it. I have been on so many meds. > Sometimes it goes away for a while the longest 4 weeks and it comes back. It > is a shame she has to be on the Predisone. I try to stay away from it as > much as possible. > Have you had her thyroid tested. Alot of us have under or over active > thyroids. I do believe it has something to do with it. > Tell her it has to get better. I have to believe that. > Please keep in touch. > > Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2001 Report Share Posted February 12, 2001 To jacquiegardiner RE: Your daughter. I believe I have true idiopathic urticaria, but can't say for sure. Does your daughter have allergies to anything at all? I have been doing a lot of reading on Salicylates and have some info on going on a Salicylate free diet. I tried it once before, but apparently I wasn't on it long enough. If you and she are desperate enough, I would try going on a very limited diet under doctor supervision to ruleout a hidden food cause. I know it will be hard, but would be worth it to rule out foods completely. I am allergic to aspirin, that is why I am going to try the Salicylate free diet. Also, many say they test negative for allergies to foods; however, I have read that it is not always an allergy to foods, but an intolerance and that might be why tests come out negative? I' m not a doctor so I don't know this for sure. Good luck! By the way, I have had this for 22 years now. Hope your daughter doesn't suffer that long. Did you ever try atarax for her? It is one of the oldest and strongest antihistamines, but it causes drowsiness. I never went on prednisone for this condition. I am surprised how many have been put on it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2001 Report Share Posted February 14, 2001 Hi , Thanks for your reply. was on a food free diet, through a nasal-gastro tube and that was Salicylite free food. Unfortunately she had CU and Angio the whole time she was in hospital on the feed, we thought that when she got home it would ease, but it didn't. They say that it is not food, addatives, preservatives or any other ingested items. Water was filtered and de-ionised etc and made no difference, but thanks for the tip. Sorry to hear you have had this for so long and hope you go into remission soon, take care Jacquie----Original Message Follows---- From: L95@... Reply-To: urticaria To: urticaria Subject: Re: CU and Angioedema Date: Mon, 12 Feb 2001 23:19:36 EST To jacquiegardiner RE: Your daughter. I believe I have true idiopathic urticaria, but can't say for sure. Does your daughter have allergies to anything at all? I have been doing a lot of reading on Salicylates and have some info on going on a Salicylate free diet. I tried it once before, but apparently I wasn't on it long enough. If you and she are desperate enough, I would try going on a very limited diet under doctor supervision to ruleout a hidden food cause. I know it will be hard, but would be worth it to rule out foods completely. I am allergic to aspirin, that is why I am going to try the Salicylate free diet. Also, many say they test negative for allergies to foods; however, I have read that it is not always an allergy to foods, but an intolerance and that might be why tests come out negative? I' m not a doctor so I don't know this for sure. Good luck! By the way, I have had this for 22 years now. Hope your daughter doesn't suffer that long. Did you ever try atarax for her? It is one of the oldest and strongest antihistamines, but it causes drowsiness. I never went on prednisone for this condition. I am surprised how many have been put on it. Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
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