Guest guest Posted April 26, 2007 Report Share Posted April 26, 2007 > > Ann, I'm taking azathioprine and I never had any side effects. But those symptoms remind me of going through menopause, lol!!! > Kay in TX, AIH/PBC > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2007 Report Share Posted April 26, 2007 Hello Ann, Welcome to this group. And by the way, I am from Finland. I have now 10-year-old son with PSC (dx July 2003). He was on Prednisolon for several years but weaning him off it did not work out for quite a while because the liver enzymes got worse every time. So first Azathioprine was added in November 2005. He did not seem to have major problems because of it but still he had elevated liver ezymes in the spring 2006 and budenisode was added to his regime. Only after that we managed gradually to leave out prednisolone in October 2006. His Azathioprine dose is now 100 mg per day and budenisode 3 mg per day. He has additionally had Adursal (urso) at various doses the whole time and calcium with vitamin D for little over two years. At the moment he has hydrocortisone compensation treatment as well because his cortisole production and elevation at stress situations has suffered from the long-term use of prednisolon (if I understood the doctor correctly). I hope your consultant can get your liver disease and the side effects under control soon but sometimes finding the best regime for you takes time and you have to try out different combinations of different medications which can be frustrating. Good luck and keep us posted on what works for you. Best regards, Taru-Mari > > I've been reading your posts for a while now and this is the first time > I have posted myself. > My name is Ann Haston and I live in Edinburgh Scotland, I notice that > you are all in the U.S.A so I hope you don't mind me joining in. > I have had Auto immune liver disease since late 2003and on prednisolone > since then, I was on 45mg but now down to 10mg a day. > The consultant keeps trying to wean me off but when I get down to 5mg I > become unwell again, he has now put me on Azathioprine 50mg as well as > the prednisolone, I don't know if it is the new medication but these > past weeks I have become soooo tired yet can't sleep at night, sore > bones,sweats, forgetfull and a bit confused, and now palpitations.I > haven't saw on the postings that anyone else is taking the Azathioprine > and was wondering if they have, did you get the same symptoms as me? > Any answers would be most appreciated. > Best regards > Ann > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2007 Report Share Posted April 26, 2007 Hi again, I sent my previous message before seeing our latter message. Hope you do not have diabetes. And I guess your liver disease situation is quite different from that of a 10-year-old boy. Good luck on Wednesday! Taru-Mari > Thanks to everyone for your support, I don't think this is a side > effect of the Azathioprine I think maybe I have diabettes but will find > out for sure on Wednesday. > Kay going through the menopause was a doddle compared to this, I > think , on saying that it was that long ago I can't remember!!!. > Feeling great today even cooked a meal something I haven't done for ? > can't remember that either, lol!!! > will keep you posted > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2007 Report Share Posted April 26, 2007 Hallo Everyone Hallo " Taru-Mari " I am sorry to hear that your son has been so ill with PSC, it is sad and doesn't seem fair that someone so young suffers from this awful illness. My thoughts go out to you and your family, Best Regards, Ann > > > > I've been reading your posts for a while now and this is the first time > > I have posted myself. > > My name is Ann Haston and I live in Edinburgh Scotland, I notice that > > you are all in the U.S.A so I hope you don't mind me joining in. > > I have had Auto immune liver disease since late 2003and on prednisolone > > since then, I was on 45mg but now down to 10mg a day. > > The consultant keeps trying to wean me off but when I get down to 5mg I > > become unwell again, he has now put me on Azathioprine 50mg as well as > > the prednisolone, I don't know if it is the new medication but these > > past weeks I have become soooo tired yet can't sleep at night, sore > > bones,sweats, forgetfull and a bit confused, and now palpitations.I > > haven't saw on the postings that anyone else is taking the Azathioprine > > and was wondering if they have, did you get the same symptoms as me? > > Any answers would be most appreciated. > > Best regards > > Ann > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2007 Report Share Posted April 27, 2007 > > > >You said something in your post that has kept me giggling all day- " menopause was 'a doddle' compared to this... " What a cute phrase!! Thank you for the happy moment!! in OR Ann, I'm taking azathioprine and I never had any side effects. But > those symptoms remind me of going through menopause, lol!!! > > Kay in TX, AIH/PBC > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2007 Report Share Posted September 5, 2007 -Hi, - welcome! We're the SmartER Bandsters here - not the Smart Bandtsers, which is a different group. there are lots of different opinions since banduing is quite new in this country, and there is not a lot of written info yet. But my band guide is based on the written Inamed guidelines, the written Bnd books, and practical experience. I'm afraid many nutrtionsists and even docs don't know some basic band concepts. for instance, the band with a good fill and good meal, will keep us satisfied for 3-4 hrs. if they read the inamed surgon's material, tney would know that - or if they were banded, they would learn that! so what are we supposed to do between meals, starve? That's when we " lose it " and run to the closest vending machine. oractical info. Then, how are we to meet the guidelines for health in only 3 (4 oz) meals a day???? ther eis no way to meet them, so are we supposed to hurt our health furgter, while trying to improve it by losing weight? I hope your nutritionist can undertsand this. It is IMPOSSIBLE to meet the goals in less than 1200-1500 cal a day: 50-60 gm protein for women, 60-70 for men. sokid portein to meet band needs, and avoid liquid calories including protein drinks - as per the Inamed guide 25-30 gm day of food fiber (not supplements which can clog up the band calcium - 1200-1500 mg a day for womne, 1000 for me 50-55% of the diet from good barbs, 10-15% from protein (0.8 gm/day per kg of idel body weight), 10-15% from the good omega 3 oils. Simply ask her to design you a fiood plan that meets these goals in 3 (4 oz ) meals a day plus one bit of string cheese! enough said. :-) It's easy to say things, but much harder to examine the ideas and suggestions and make them work. As far as info from the Net - I personally found that I learned about 95% of what i needed to know to do well from other more experienced bandsters before me. How can our docs teach us about day to day living? they are not banded, see us maybe 1/2 hrs every 6 weeks - mostl for fills, and we never see them other times except when we are in trouble ! Ther ewas a recent study that just cme out about how positive it was to learn things from online medical forums. i'll try to find time to post that again here soon. Most of the band guide is based on the Inamed written materials, the pruublished books on banding by Dr Areiel Ortiz nd Dr Jessie Ahroni ( a banded NP in Seattle, banded 8+ yrs, at goal x 7+) and a band expert, if there ever was one. She is part of a major seattle band surgical group. It's not as if we are simply making things up! they are safe, they work, they keep us satisfied, they meet all nutritional needs, and - did i say - they work? :-) Sandy r -- In , " " <sandrak045@...> wrote: > > Hi Smart Bandsters! Is good to get to know all of you through your > posts (just read 65 or so of them yikes) I followed Sandy here from > OH message board. Seems I'm always looking for other lap banders. > I mostly spent time on the NY OH messge board but there are only a > few who have been banded, they are great! I just have trouble with > the differences being told to the RNY'rs and us. As today I am torn > between what I am hearing about food intake and water before etc. > My nutritionist says, no water 30 min before blah blah and no more > than 4oz of food 3X a day and 1 string cheese kinda snack at night > if I need it. Of course I can have jello or popcycles in between as > those serve as liquid intake. HMMMMM I never really feel full > unless I have eaten at least 5 oz and I've had something like mixed > veggies and chicken or turkey. More solid foods I guess. I printed > out what Sandy shared and i'm taking it to my doctor when I see him > next, cuz it makes sense to me and she has been at this a long time > and successful. That to me is important. Plus the fact she is a > nurse and does so much research. The hard thing is not feeling like > your messing with the " system " by going against what your being told > by your support team/doctor. My nutritionist even told me to go by > what she and my doc are telling me and not to listen to > anything " negative " that I might find on message boards. LOL I > don't think its negative.. its information to me! sooooooo what to > do?? LOL guess I will figure it out! > I had my surgery on 8/03/07 and I'm down 32lbs when last weighed (1 > week ago) I don't see my doc again till the end of the month but I > need to know what I weigh now so I will probably go in at the end of > this week. Just ordered a scale so I can weigh in weekly and make > sure I'm at least losing 1-2 lbs a wk. > Its good to be posting amoung so many who are committed to healthy > living and look forward to knowing you more and more as time goes on! > Sincerely, > > 378/346/?? @ 170 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2007 Report Share Posted September 5, 2007 >> It is IMPOSSIBLE to meet the goals in less than 1200-1500 cal a day<< Hear! Hear! I don't think I have ever eaten less than 1200 calories. Based on my current age, activity level, etc., I would need to consume 2400 calories a day to maintain my current weight. Consuming 1600 calories per day, I'd lose 1-2 lbs per week. As I lose weight, I'd have to consume a bit less. But it is utterly ridiculous to think that one can live healthfully and for the long term on 1000 calories per day. Right now, I'm averaging 1600-1700 calories and losing at least 2 lbs a week. At my GOAL weight, I'd have to take in 1800 calories per day to MAINTAIN. (A newborn infant needs 900 calories per day to thrive. When you compare our size to the size of a newborn, one has to wonder how adults are expected thrive on less than 1000 calories per day.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2007 Report Share Posted September 5, 2007 Ok I stand corrected " SmartERBandsters " it is! LOL I printed out what you shared Sandy and I am going to have my doctor read it. I really do agree with you. I've been talking to my hubby and explaining why it makes sense to me. I know I'm not getting what I need in terms of nutrition. I am still having the protein shakes ( 2 unjury, 1 with crystal light and one with milk) to get in enough protein and calcium. My doctor said the goal was to get all my nutrition from food not liquids. But I have been journaling and I simply don't get it in with 3 meals of 4 oz. Its not possible So, is this about being in starvation mode to get the weight off? I am losing well I think, I will know how much more if any on friday. Right now I'm not freaking out over it, I don't feel HORRIBLE not eating, I do feel hungry and I think about food still but I just say no! I am very big and I am very home bound for the most part due to arithritis and no cartilege in the knees. I've had to stop the NSAID meds and Tylenol arthritis doesn't do it for me. I ice all day after doing cleaning jobs. I take a narcodic to be able to make it through the grocery store. I need to get the weight off my knees quickly but I chose a less invasive surgery that I knew would take longer to lose, cuz I don't want to add to my health issues. So far I have no problems but the bad back and knees! Right now I believe I would starve myself to get this off fast and have less pain! Yet, I know I need to be able to be healthy and maintain what I've lost so I am going to discuss all of this with Dr. . Also... another question... Calcium.. my Nutritionist said to " just take a Tums for the calcium I need " I read on one of the boards that Tums is a carbonate and it isn't what we need.. we need a " citrate " ? Thanks for the help, Re: hello everyone -Hi, - welcome! We're the SmartER Bandsters here - not the Smart Bandtsers, which is a different group. there are lots of different opinions since banduing is quite new in this country, and there is not a lot of written info yet. But my band guide is based on the written Inamed guidelines, the written Bnd books, and practical experience. I'm afraid many nutrtionsists and even docs don't know some basic band concepts. for instance, the band with a good fill and good meal, will keep us satisfied for 3-4 hrs. if they read the inamed surgon's material, tney would know that - or if they were banded, they would learn that! so what are we supposed to do between meals, starve? That's when we " lose it " and run to the closest vending machine. oractical info. Then, how are we to meet the guidelines for health in only 3 (4 oz) meals a day???? ther eis no way to meet them, so are we supposed to hurt our health furgter, while trying to improve it by losing weight? I hope your nutritionist can undertsand this. It is IMPOSSIBLE to meet the goals in less than 1200-1500 cal a day: 50-60 gm protein for women, 60-70 for men. sokid portein to meet band needs, and avoid liquid calories including protein drinks - as per the Inamed guide 25-30 gm day of food fiber (not supplements which can clog up the band calcium - 1200-1500 mg a day for womne, 1000 for me 50-55% of the diet from good barbs, 10-15% from protein (0.8 gm/day per kg of idel body weight), 10-15% from the good omega 3 oils. Simply ask her to design you a fiood plan that meets these goals in 3 (4 oz ) meals a day plus one bit of string cheese! enough said. :-) It's easy to say things, but much harder to examine the ideas and suggestions and make them work. As far as info from the Net - I personally found that I learned about 95% of what i needed to know to do well from other more experienced bandsters before me. How can our docs teach us about day to day living? they are not banded, see us maybe 1/2 hrs every 6 weeks - mostl for fills, and we never see them other times except when we are in trouble ! Ther ewas a recent study that just cme out about how positive it was to learn things from online medical forums. i'll try to find time to post that again here soon. Most of the band guide is based on the Inamed written materials, the pruublished books on banding by Dr Areiel Ortiz nd Dr Jessie Ahroni ( a banded NP in Seattle, banded 8+ yrs, at goal x 7+) and a band expert, if there ever was one. She is part of a major seattle band surgical group. It's not as if we are simply making things up! they are safe, they work, they keep us satisfied, they meet all nutritional needs, and - did i say - they work? :-) Sandy r -- In , " " <sandrak045@ ...> wrote: > > Hi Smart Bandsters! Is good to get to know all of you through your > posts (just read 65 or so of them yikes) I followed Sandy here from > OH message board. Seems I'm always looking for other lap banders. > I mostly spent time on the NY OH messge board but there are only a > few who have been banded, they are great! I just have trouble with > the differences being told to the RNY'rs and us. As today I am torn > between what I am hearing about food intake and water before etc. > My nutritionist says, no water 30 min before blah blah and no more > than 4oz of food 3X a day and 1 string cheese kinda snack at night > if I need it. Of course I can have jello or popcycles in between as > those serve as liquid intake. HMMMMM I never really feel full > unless I have eaten at least 5 oz and I've had something like mixed > veggies and chicken or turkey. More solid foods I guess. I printed > out what Sandy shared and i'm taking it to my doctor when I see him > next, cuz it makes sense to me and she has been at this a long time > and successful. That to me is important. Plus the fact she is a > nurse and does so much research. The hard thing is not feeling like > your messing with the " system " by going against what your being told > by your support team/doctor. My nutritionist even told me to go by > what she and my doc are telling me and not to listen to > anything " negative " that I might find on message boards. LOL I > don't think its negative.. its information to me! sooooooo what to > do?? LOL guess I will figure it out! > I had my surgery on 8/03/07 and I'm down 32lbs when last weighed (1 > week ago) I don't see my doc again till the end of the month but I > need to know what I weigh now so I will probably go in at the end of > this week. Just ordered a scale so I can weigh in weekly and make > sure I'm at least losing 1-2 lbs a wk. > Its good to be posting amoung so many who are committed to healthy > living and look forward to knowing you more and more as time goes on! > Sincerely, > > 378/346/?? @ 170 > ________________________________________________________________________________\ ____ Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Games. http://get.games./proddesc?gamekey=monopolyherenow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2007 Report Share Posted September 6, 2007 -no, starvation mode is when we are eating too FEW calories (felt to be around 1000 a day) and the nobody feels so threatebed, that it SHUTS DOWN all weight loss to preserve evergy and calories for essentials body functions. TIt's something to AVOID, as it also furhter messes up the metabolism. This is why we neeed to avoid less than 1000 cal a day, excapt for very very brief periods. We are never ever trying to eat as little as possible - but to eat healthy foods that meet our nutrition needs, MINUS 500-1000 cal a day - this allows the normal 1-2 # a week loss, with some decent exercsie. 1 pound = 3500 caloriesd.None of this is a guessing game - it's all scientific formula. This equateds to about 1200-1500 cal a day for women, nover less - and more if we are exercising heavily - which i don't recommend. only moderste exercise is needed, + weight training. I'm afraid your doc isn't making sense to me if he agrees (good for him!) that we must avoid liquid calories and protein drinks and have only solid foods - BUT expects you to get the nutrition needed in olny 3 small meals! " Does not compute!! " Unless we start over 350-400 #, the goal is 1-2# a week and this usually only begines after we get to a good fill. Sandy r -- In , Kay <sandrak045@...> wrote: > > Ok I stand corrected " SmartERBandsters " it is! LOL > I printed out what you shared Sandy and I am going to have my doctor read it. > I really do agree with you. I've been talking to my hubby and explaining why it > makes sense to me. I know I'm not getting what I need in terms of nutrition. I am still having the protein shakes ( 2 unjury, 1 with crystal light and one with milk) to get in enough protein and calcium. > My doctor said the goal was to get all my nutrition from food not liquids. But I have > been journaling and I simply don't get it in with 3 meals of 4 oz. Its not possible > So, is this about being in starvation mode to get the weight off? I am losing well I think, > I will know how much more if any on friday. Right now I'm not freaking out over it, > I don't feel HORRIBLE not eating, I do feel hungry and I think about food still but > I just say no! I am very big and I am very home bound for the most part due to arithritis > and no cartilege in the knees. I've had to stop the NSAID meds and Tylenol arthritis doesn't do it for me. I ice all day after doing cleaning jobs. I take a narcodic to be able to make it through > the grocery store. I need to get the weight off my knees quickly but I chose a less > invasive surgery that I knew would take longer to lose, cuz I don't want to add to my health issues. > So far I have no problems but the bad back and knees! Right now I believe I would starve > myself to get this off fast and have less pain! Yet, I know I need to be able to be healthy and maintain what I've lost so I am going to discuss all of this with Dr. . > Also... another question... > Calcium.. my Nutritionist said to " just take a Tums for the calcium I need " I read on one of the > boards that Tums is a carbonate and it isn't what we need.. we need a " citrate " ? > Thanks for the help, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2007 Report Share Posted September 7, 2007 Sandy, //we are exercising heavily - which i don't recommend. only moderste exercise is needed, + weight training.// Why shouldn't we exercise more? I am walking between 7 and 10 miles a day these days. I absolutely love it and feel so energized from it. I spread it out so that I usually do 3.5 miles 2 or 3 times. In the morning I use it to get me up and out of the house, and to socialize (I love walking buddies!) and then later in the day I use it as my " me time " it actually really helps me evaluate everything that's gone on during the day and reflect on it. its kinda like aerobic meditation for me. is there some reason I shouldn't be doing that? My doc didn't seem concerned about it, but did tell me I could up my caloric intake a little bit because of it. I've also upped my water intake a good bit too. Any thoughts? - Ada 5'6 " Age 26 364 / 285 / 216 Consult/Band Day/Now 7.20.06/3.19.07/9.3.07 Lap Band by Dr. Greene in Rockville, MD --------------------------------- Pinpoint customers who are looking for what you sell. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2007 Report Share Posted November 22, 2007 Welcome JJ....you will learn alot here...I had bilateral knees on Aug 21, 07....If you have questions, just ask...you will get lots of responses, opinions and comments...Good Luck with your surgery, do your exercises, and take your pain meds...... Marguerite On Nov 21, 2007 6:14 AM, J. J. <TxTruker@...> wrote: > > > > > I am new here. I am going to have total knee replacement Dec. 18th > if all goes well. I joined here because this is all a new experience > to me and I am hopeful that I can learn a lot from all of you. > I give my first of two units of blood today in preparation for the > surgery.I have also attended a pre-op class. JJ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2007 Report Share Posted November 23, 2007 Thanks Marguerite, I will try to learn all I can about what to expect and what seemed to work best for all of you. I went to give a unit of blood Friday but because of one of my prescriptions they would not let me give it. I will be off that medication Monday so I will go back Wednesday and give a unit. The Dr. wanted me to give two but with this set back I will only be able to give one unit. JJ > > Welcome JJ....you will learn alot here...I had bilateral knees on Aug > 21, 07....If you have questions, just ask...you will get lots of > responses, opinions and comments...Good Luck with your surgery, do > your exercises, and take your pain meds...... > Marguerite > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2007 Report Share Posted November 23, 2007 In a message dated 11/21/2007 9:01:53 P.M. Eastern Standard Time, TxTruker@... writes: I am new here. I am going to have total knee replacement Dec. 18thif all goes well. I had a TKR on Oct 22 - and am doing well. The most important things I fount out were 1. When people tell you that it's hard work, they're telling the truth. Do your exercises even when you don't want to and your leg hurts and you're tired.... That's what will give you a functioning knee again. Half of the success is what your surgeon does and half is what you do. 2. It does hurt, especially at the beginning, so take your pain meds. And remember, it does feel better, and even the pain right after surgery wasn't as bad as trying to walk around with a bone on bone worn out knee. 3. When friends and family offer to help, TAKE THEM UP ON IT, the more help you have, especially right after the surgery, the more you can concentrate on your recovery. Robin "Be kinder than necessary, for everyone you meet is fighting some kind of battle." Check out AOL Money Finance's list of the hottest products and top money wasters of 2007. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2007 Report Share Posted November 23, 2007 I gave two units of my own blood and only ended up using one. Maybe you wont need two. Marguerite On Nov 23, 2007 6:56 AM, J. J. <TxTruker@...> wrote: > > > > > > Thanks Marguerite, I will try to learn all I can about what to > expect and what seemed to work best for all of you. > I went to give a unit of blood Friday but because of one of my > prescriptions they would not let me give it. I will be off that > medication Monday so I will go back Wednesday and give a unit. The Dr. > wanted me to give two but with this set back I will only be able to > give one unit. JJ > > > > > > Welcome JJ....you will learn alot here...I had bilateral knees on > Aug > > 21, 07....If you have questions, just ask...you will get lots of > > responses, opinions and comments...Good Luck with your surgery, do > > your exercises, and take your pain meds...... > > Marguerite > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2007 Report Share Posted November 23, 2007 Thanks Robin. I will remember the advice. I have accepted that it will be hard but I am willing to do what I have to do to be able to walk pain free later on. > > > > In a message dated 11/21/2007 9:01:53 P.M. Eastern Standard Time, > TxTruker@... writes: > > I am new here. I am going to have total knee replacement Dec. 18th > if all goes well. > > I had a TKR on Oct 22 - and am doing well. The most important things I > fount out were > > 1. When people tell you that it's hard work, they're telling the > truth. Do your exercises even when you don't want to and your leg hurts and > you're tired.... That's what will give you a functioning knee again. Half of the > success is what your surgeon does and half is what you do. > > > 2. It does hurt, especially at the beginning, so take your pain meds. > And remember, it does feel better, and even the pain right after surgery > wasn't as bad as trying to walk around with a bone on bone worn out knee. > > 3. When friends and family offer to help, TAKE THEM UP ON IT, the more > help you have, especially right after the surgery, the more you can > concentrate on your recovery. > > > Robin > " Be kinder than necessary, for everyone you meet is fighting some kind of > battle. " > > > > **************************************Check out AOL's list of 2007's hottest > products. > (http://money.aol.com/special/hot-products-2007? NCID=aoltop00030000000001) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 On loss of smell : you may want to have a look at the following site : http://personal.ecu.edu/wuenschk/Anosmia-Personal.htm Karl Wuensch used to contribute to this group. On diet and also arthritis : an interesting opinion is developed in the book " Inflammation Nation " , by Dr. Floyd H. Chilton, Fireside ed. Some (including me) believe diet is important, and if you want to investigate that avenue, " Inflammation Nation " is an excellent read. > > Hi everyone, > I am new to this group and my doc thinks I have triad asthma, started > late 2004, 2 sinus surgeries and a whole list of meds haven't really > helped, currently taking Advair daily which controls my asthma pretty > well, can not take any NSAIDs no big deal, but my main complaint is > the chronic nasal congestion and loss of smell. I am going for ASA > desensitization consult tomorrow. What is the average success rate? is > diet so important? any relation of this condition to arthritis? I do > have some generalized joint pain also...lots of questions, hope can > get some answers from the group. > Best wishes of health for everyone for 2008! > Sam > (44 year old) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 welcome to the group--always sad to hear that someone else is diagnosed but nice to know you found somewhere that you can find help. Don't ever worry about asking too many questions, I'm always asking still and we have been at this for about 8 years now. Ask away if you have questions and someone is bound to jump in and help you out. e, mom to " joe " 21 poly/lupus <kpiper1977@...> wrote: Hello everyone my name is and we live in Ohio. My son was just dianosed this past Oct. with JRA. He's going on 13. Alot of what I hear is so hard to take in. I think sometimes I ask to many questions at his doctor appointments but theres so much I still dont know. He just started the Enbrel shot and it seems to be working out for him. Iam happy to have found a group of people I can talk to about this. Well hope to hear from you all soon. Take care. --------------------------------- Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2008 Report Share Posted January 25, 2008 Hi , Welcome to the group. You can never ask to many questions at a Dr's office. Since you have found this group you ask any question you want as there is never a question to big or small here. The one thing is if you never ask, You never know the answer so keep on asking questions. :-). This group has many in it and we all deal with JRA, JA or JIA depending on what area you are in as it is named differently in different areas. You will also see People not only from the US but other places around the World here who also have a child with JA. It is a GREAT source of information. Another good thing is many are on different Treatments here so you can find out what other's have gone through. What has worked and what has not worked. There's many ages here as well. Some who are Adults with JA as well. Robbin **************Biggest Grammy Award surprises of all time on AOL Music. (http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\ 5 48) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2008 Report Share Posted January 25, 2008 I am also from ohio welcome to the group! its been a great support system for me. Hello everyone my name is and we live in Ohio. My son was > just dianosed this past Oct. with JRA. He's going on 13. Alot of what I > hear is so hard to take in. I think sometimes I ask to many questions > at his doctor appointments but theres so much I still dont know. He > just started the Enbrel shot and it seems to be working out for him. > Iam happy to have found a group of people I can talk to about this. > Well hope to hear from you all soon. Take care. > > > > > > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Search. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2008 Report Share Posted February 25, 2008 Hi Liz Glad you made it here at last, seems it has been quite a struggle one way or another. I hope you get all the help and support you need from this forum. On the Home Page of this forum website thyroid treatment go to the Menu on the side and click FILES. Scroll through these documents and read everything you can about Armour. You can also read about Armour on our Official Website www.tpa-uk.org.uk. Click on 'Hypothyroidism' there and in the drop down menu, click on Tests and Treatment and read, read, read, until you understand everything there is to know about natural thyroid extract. Armour contains ALL the thyroid hormones a normal body requires, but you have to be careful and use this medication from a low dose, and gradually build it up. You can see how to do this in "How to Use Armour Thyroid" in our FILES. Do you have any thyroid blood test results and the reference range for each test done that you could post here Liz. We can tell so much more from these results. Also, how much Thyroxine are you taking right now and how long has it been since your GP increased it. If you have an impending visit with your endocrinologist, again, go to our FILES and scroll down until you see "First Visit to Endocrinologist" and have a look at the information there. There may be some questions you want to ask him. So write these down and make sure he thoroughly answers anything and everything you don't understand. Ask him to do a full thyroid function test which includes TSH, Free T4, Free T3 and if you have not had the test previously, a test to see if you have antibodies to your thyroid. It is also a good idea to get tested to see where your Ferritin level (sorted iron) lies. If you are concerned about your visit to the endocrinologist, take somebody with you. often, this works wonders. Doctor seem to be more attentive if you have somebody with you and less dismissive. Hope this helps for the time being. Luv - Sheila Hello everyone Hi my name is elizabeth Im a new member I've been sufering with thyroid for seven years and Im here to find out more information about armour thyroid and need your support on where to get help. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.0/1296 - Release Date: 24/02/2008 12:19 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 Well I went to the gi doctor again and have the new scripts for peginteron and ribivarin I called my so called insurance was suppose to cover 80% lol the cost of the meds was 2700 for the ribivarin and 1800 for the peg. for 3 months supply so I thought I would just go nuts. Then went to get the cashiers checks and all that and they said to me at the pharmacy you should call Commitment to care they should help you. So I got all the info and the doctor faxed back to me. Since I was just denied medicaid I sent the denial letter all that junk check stubs etc.. I am just waiting to know if they except me so I can start tx. So say and extra prayer for me! [Hepatitis C Support Group] Checking inHi all sorry I haven't been online, lots of probs. right now or should I say still hahaaaa.. Had chest x-ray done yesterday haven't lost this cough from flu last month and no not a smoker's cough. Hope it doesn't show anything lost alot of weight among other things but I am now off tx. Didn't think I would finish but with God's help I did it and 's of course. Didn't want to alarm any newbies with my tales of side affects. Forgive spelling lucky I know who I am hahaaa. Have no short term memory right now, will try and get with the program. Thanks for all your support couldn't have done it without you guys either. Love and miss everyone. Hope you all are doing good. love and hugs...pat...wwpat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2008 Report Share Posted July 18, 2008 > > Hello all i am new to the group and wanted to introduce myself ! My > name is Lee and i have an almost 6 year old man named A.J. who has > Autism.. I joined this group mostly for him, but have noticed i need > some help too.. > > I have been reading through all the intresting files over the last > few days, but still have a question i didn't see in there but may have > missed.. > > I started with a fungal infection under one nail, thinking it was > caused by excessive wetness at work.. it has spread to 5 nails.. i know > this is gross, but when you push on it gunk comes out... > > I have started the first two steps eliminating sugar, carbs etc.. > > my question is , while i am starting these steps, can i put coconut > oil, or anything directly on the nail, to help at all ? > > Thanks Bee .. Lee ==>Hi Lee. Welcome to our group. Yes you can treat your nail fungus at the same time as you are starting the program. Here's the article on treating nail fungus: http://www.healingnaturallybybee.com/articles/skin5.php The best in health, Bee > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2008 Report Share Posted September 13, 2008 Take some stool softeners and see if they will allow you to take the pain meds.. Tom In a message dated 9/13/2008 3:40:38 A.M. Mountain Daylight Time, lola94080@... writes: Thankyou for the warm wellcome.. I have a pain in my right buttocks...After 5 months of this..I can no longer walk ..I have had an MRI, EMG, X-ray of the hips..The spine doctor can`t diagnose what the problem is..Before this happened to me I was very active..I can`t do anything anymore..All I can do is swim! I take somas to sleep..(can`I take somas to sleep..(can`<WBR>t sleep.ouch).sleep.ouch).<WBR>.I can`t take pain killers because they bad. When I get up after the second hour .I am down ..I can`t bend over..I am 59 now,,,I looked at my MRI..The Doc did say It could be my Sacraliliac joint...All I know is I can`t put any pressure on my right side..I can`t walk..and since this my pelvic gait is changing I look in the mirror and i see a lop-sided body.. I feel like nothing these days..Can`t even prepare dinner or walk my dog..I have a board in my car to sit on..Because sitting is the only thing that takes the pain away! **************Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelist.com/trends?ncid=aolsty00050000000014) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2008 Report Share Posted September 13, 2008 Hi there. I think thats right. Its that joint. I have problems there, and it effects my hip, my legs. Course my injury is ten years old now. But i couldnt walk. If you cant get any regular doctor or spine doctor to diagnose it. Go to a chiropracter. Lug your mri, your xrays, everything with you. They will know. especially if you take that stuff with you. So in order to find a good chiropracter ask around. You dont want a goof-ball chiro. You ant a good one, one been at it a long time.--- In neck pain , " lola94080 " <lola94080@...> wrote: > > Thankyou for the warm wellcome.. > I have a pain in my right buttocks...After 5 months of this..I can no > longer walk ..I have had an MRI, EMG, X-ray of the hips..The spine > doctor can`t diagnose what the problem is..Before this happened to me > I was very active..I can`t do anything anymore..All I can do is swim! > I take somas to sleep..(can`t risk bending the wrong way in my > sleep.ouch)..I can`t take pain killers because they constipate me so > bad. > When I get up after the second hour .I am down ..I can`t bend over..I > am 59 now,,,I looked at my MRI..The Doc did say It could be my > Sacraliliac joint...All I know is I can`t put any pressure on my right > side..I can`t walk..and since this my pelvic gait is changing I look > in the mirror and i see a lop-sided body.. > I feel like nothing these days..Can`t even prepare dinner or walk my > dog..I have a board in my car to sit on..Because sitting is the only > thing that takes the pain away! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2008 Report Share Posted September 13, 2008 Hi Lola I'm not sure that a chiropractor is the one you want to see, it could be a hernia ted disc, or as in my case, I had developed a sacral upslip from severe inflammation that occurred in the SI joint as a result of an undiagnosed L5 bulge that had put pressure on nerves that had weakened the glute medius as well as other hip stabilizers. I too started first with a chiropractor years ago and they never helped- they cant help when the root is a disc problem, in fact they can irritate nerves. I would go to Physiatrist- they can direct you in the direction of a Neurosurgeon if that is the need, or perhaps they can manage with epidurals or nerve blocks to decrease the inflammation and than get you into some good Physical Therapy to help decrease the protective spasm that is going on and strengthen and lengthen the muscles that shorten when they are in protective spasm too long. Believe me I know alllllll about this.... Its always more complicated than just going to a chiropractor- no offense to those who go and it works. Often there is musculature that has become affected by the impinged spinal nerve and just a massage or an adjustment just isn't enough. So get your self to a good Physiatrist- if you don't know one, have your Primary Care refer you to one, or check with your insurance plan and see who is participating, and you can go online and google who might be in your area and read their credentials which every good practice now pretty much will have on their web page. As you can see, I have learned all this through years of dealing with this so I hope I can help you with this information. I hope this helps and I wish you the best. Hello everyone Thankyou for the warm wellcome.. I have a pain in my right buttocks...After 5 months of this..I can no longer walk ..I have had an MRI, EMG, X-ray of the hips..The spine doctor can`t diagnose what the problem is..Before this happened to me I was very active..I can`t do anything anymore..All I can do is swim! I take somas to sleep..(can`t risk bending the wrong way in my sleep.ouch)..I can`t take pain killers because they constipate me so bad. When I get up after the second hour .I am down ..I can`t bend over..I am 59 now,,,I looked at my MRI..The Doc did say It could be my Sacraliliac joint...All I know is I can`t put any pressure on my right side..I can`t walk..and since this my pelvic gait is changing I look in the mirror and i see a lop-sided body.. I feel like nothing these days..Can`t even prepare dinner or walk my dog..I have a board in my car to sit on..Because sitting is the only thing that takes the pain away! Quote Link to comment Share on other sites More sharing options...
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