Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 > I had many fillings & root canals that were removed - not from a biological dentist. I had symptoms of a heart attack from > 500 mgs of vit C due to thrush. If vitamin C caused thrush, at my house that would mean you have latent viruses that the vitamin C was pulling out. >>I have a cyst on on the upper side of my head, that gives me the worst fear. My balance is off & having pain all over. Not sure if related to the cyst, but balance issues at my house were related to yeast overgrowth. >>I get this reaction that feels like swelling in my throat, but isn't from wheat & now other things. Latest to a gelled vit D3. Could be the gel- Don't know. Vitamin D also pulled viruses here, and caused a lot of yeast overgrowth. It sounds like you need a yeast protocol. Biotin and GSE worked very well here. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 > I had many fillings & root canals that were removed - not from a biological dentist. I had symptoms of a heart attack from > 500 mgs of vit C due to thrush. If vitamin C caused thrush, at my house that would mean you have latent viruses that the vitamin C was pulling out. >>I have a cyst on on the upper side of my head, that gives me the worst fear. My balance is off & having pain all over. Not sure if related to the cyst, but balance issues at my house were related to yeast overgrowth. >>I get this reaction that feels like swelling in my throat, but isn't from wheat & now other things. Latest to a gelled vit D3. Could be the gel- Don't know. Vitamin D also pulled viruses here, and caused a lot of yeast overgrowth. It sounds like you need a yeast protocol. Biotin and GSE worked very well here. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2010 Report Share Posted October 22, 2010 Lily, First of all welcome. My name is Teri, I was diagnosed in 2004 and went thru treatment in 2005-2006 for 48 weeks. I tested at undetectable levels 6 weeks into treatment, and I have been SVR ever since. The relapse comes in the first year after treatment. If you can make it to the one year mark, you are pretty much in the clear. The relapse isn't so much a relapse as the treatment didn't work. At this point, I am Hep C clear. Does that answer your question? If not let me know.... Hugs, TeriOn Thu, Oct 21, 2010 at 7:03 PM, lilynile21 <lilynile21@...> wrote: Hi all. I was diagnosed in 2007 and looking for alternatives to treatment. I just read the last post and wondering if you reach svr and there is no viral load how do people relapse. That is just one reason I am reluctant to treat. Thanks Lily -- Teri GottliebIndependent Kay Beauty ConsultantHow old you are is your business. How old you look is mine. 847-738-8688www.marykay.com/terigottlieb Start your own Kay Business for $100.00http://www.marykay.com/terigottlieb/sellmarykay/default.aspx MOVE ON. It's just a chapter in the past, but don't close the book. Just turn the page. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2010 Report Share Posted October 25, 2010 Hi there, Teri is right, usually if you relapse it means the treatment didnt fully work. They can only tell the virus ABOVE a certain level (can't remember the exact numbers, sorry), but if there is virus left, it can grow again. The alternative is that you re-infect, which with precautions shouldn't really happen. However, some jobs, like mine, do bear a certain risk. Hope that helped a bit, Karina <3 > > > > > > > Hi all. I was diagnosed in 2007 and looking for alternatives to treatment. > > I just read the last post and wondering if you reach svr and there is no > > viral load how do people relapse. That is just one reason I am reluctant to > > treat. > > Thanks > > Lily > > > > > > > > > > -- > > Teri Gottlieb > Independent Kay Beauty Consultant > > How old you are is your business. How old you look is mine. > 847-738-8688 > www.marykay.com/terigottlieb > > Start your own Kay Business for $100.00 > http://www.marykay.com/terigottlieb/sellmarykay/default.aspx > > > MOVE ON. It's just a chapter in the past, but don't close the book. Just > turn the page. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Welcome to the group Dory! I have a free Lyme Resource computer CD. If you are interested see the web page below! www.lyme-resource.com You can lead a person to a fact, but you can't make them think! - > [ ] intro > > hi i'm Liese or Dory (a joke about the fish and my memory), > 50 years old, have had Lyme for at least 10 years and was > diagnosed 2 years ago with a positive test from Igenex. ID > said no i didn't have Lyme - of course, but i found a doc > (Integrative medicine) willing to treat me. i did the normal > antibiotic combos from ILADS for about 6 months and then had > liver trouble. i'e been off antibiotics for a year but > started Cat's Claw a few months ago and then heard about > Buhner's book and protocol. i've read the book. I ramped up > my cat's claw to top dosage in the protocol and am about > ready to start adding the other herbals one at a time. i'm > happy to have found a list of people tohelp and support along > the way. Thanks for letting me join. > ~ dory > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Thanks , i know you from the Lyme Rife group? possibly? i have your CD. ~dory Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 Yes Dory I am indeed that ! Blessings to you! www.lyme-resource.com You can lead a person to a fact, but you can't make them think! - RE: [ ] intro Thanks , i know you from the Lyme Rife group? possibly? i have your CD. ~dory Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2011 Report Share Posted February 1, 2011 Hi, I am Alan, 64 yr old. Dx xxy @age 19. Been on T ever since. Using Androgel. My endo has ordered T levels with my monthly labs. He say that I am within range. What are " normal " T lavels for " normal " men at my age group? He hasn't explained. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2011 Report Share Posted February 1, 2011 As a rule men need to shoot for levels up into the upper 1/3 of there labs range then go by how they feel. Some men do good at less then this others need more. Here is a link that shows levels by age but they are not men on TRT. http://www.mens-hormonal-health.com/normal-testosterone-levels-in-men.html So for the the normal levels age 64 is 562 for Total T. Co-Moderator Phil > From: A lan <am3038@...> > Subject: Intro > > Date: Tuesday, February 1, 2011, 2:53 PM > Hi, I am Alan, 64 yr old. Dx xxy @age > 19. Been on T ever since. Using Androgel. My endo has > ordered T levels with my monthly labs. He say that I am > within range. What are " normal " T lavels for " normal " men at > my age group? He hasn't explained. > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2011 Report Share Posted February 2, 2011 If he did not check your E2 get it tested, it should be in the middle of the range, usually 20-30 if the range is 10-50. You are probably overweight, big boobs, high blood pressure, & have ED problems. I am projecting my own XXY problems on you. Lowering the E2 will make losing weight easier. Losing weight will help with the ED & blood pressure. After my heart attack & 3 stints my doc told me to lose 85 pounds to get below 200 or die. He put me on the Adkins diet. I have lost 20 pounds in the last 2 weeks, about half of that water. I feel better already in stage one of the diet. Good luck > > Hi, I am Alan, 64 yr old. Dx xxy @age 19. Been on T ever since. Using Androgel. My endo has ordered T levels with my monthly labs. He say that I am within range. What are " normal " T lavels for " normal " men at my age group? He hasn't explained. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2011 Report Share Posted February 2, 2011 I had a blood test and saw the doc 2 days ago. I am overweight by 15 pds. my T levels 4 months ago were 610 and now it is 520. Why the drop. I have breasts but doc says that if I lose the weight that will help lessen the breast tissue. Hope that's true. I have started a diet and exercise program for the next 3 months. If anyone has suggestions for diet let me know. My cholestral was slightly up and my triglycrides r up. Exercise has to be altered as I am a BK knee amputee but very active. I am 48 years old. On Wed Feb 2nd, 2011 9:26 AM EST gin2c wrote: >If he did not check your E2 get it tested, it should be in the middle of the range, usually 20-30 if the range is 10-50. > >You are probably overweight, big boobs, high blood pressure, & have ED problems. >I am projecting my own XXY problems on you. >Lowering the E2 will make losing weight easier. Losing weight will help with the ED & blood pressure. >After my heart attack & 3 stints my doc told me to lose 85 pounds to get below 200 or die. > >He put me on the Adkins diet. I have lost 20 pounds in the last 2 weeks, about half of that water. I feel better already in stage one of the diet. > >Good luck > > > >> >> Hi, I am Alan, 64 yr old. Dx xxy @age 19. Been on T ever since. Using Androgel. My endo has ordered T levels with my monthly labs. He say that I am within range. What are " normal " T lavels for " normal " men at my age group? He hasn't explained. >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 Cant speak to the iritis, uveitis issues, but methotrexate will treat the disease, rather than just being a bandaid like th naproxen, which does not. Methotrexate has been around since the 1940's and is a very safe drug. The literature you are reading about it only applies to the high doses given to cancer patients. Our kids take a miniscule amount compared to that. It is very safe. It has made a difference for many of our kids. The eye disease is of concern. You really don't want her on predforte drops long term. Most kids eye docs move on to something that will control the disease activity, which is usually methotrexate to begin with. I think it sounds like it is about time to go that route. If you think of it as preventing terrible damage from happening (using the methotrexate, or MTX as we call it around here), you would rather treat with it than not. Relying on the naproxen is not going to stop further damage from occurring. Its late and I'm rambling, was just up with the neighbor across the street whose husband is slowly dying. So forgive me if this doesn' t make a lot of sense right now. Hang in there mom, you have come to the right place for lots of support and experience with this 'lovely disease'. (RN) adult onset RA, mom to Rob, 21, juvenile ankylosing spondylitis (spondy) Intro > Hi all. I mostly just wanted to introduce myself - I > joined the list a few > days ago. After 2-1/2 years, I guess I am at a point where I am > able to > acknowledge that my daughter's arthritis is, in fact, here to stay. > > My name is Michele. I live in South Orange County, CA, > with 3 children - K > (12), C (10) and M (5), as well as my DH. My middle guy, > C, has had a lot > of health problems growing up, but its my older DD, K, who was > diagnosedwith pauciarticular (aka oglio) JRA/JIA (our dr says > JRA still but I know > the more recent literature says JIA) about 2-1/2 years ago. > > Long story short, the arthritis started in her right knee, after > about 3 > months, showed up in her left knee. It was extremely odd > because her > initial knee pain showed up while she was on summer break from > dance (K is a > semi-serious ballerina who dances nearly daily, even now - the > studio closes > the last 2 weeks of August). We just couldn't figure out > how she hurt > herself! Once we went through the rigmarole of seeing > every dr. who might > have an interest in her knee, she was finally diagnosed with > pauci. She > initially had a steroid injection, which resolved the problem > for a time. > But her knees swell up and hurt from time to time, always > ache/are stiff in > the " cold " winter months as well as when it is foggy. The > dance seems to be > a sort of PT for her as she is exceedingly limber and in great > shape - we > saw a physical therapist a couple times, but there wasn't much > she could > really do for K. Right now, we only treat as needed with > naproxen. > The first casualty of this lovely disease was her aspiration of > being a > professional ballerina. > > As I understand is not uncommon with girls with her version of > JRA, she also > has the accompanying eye issues. Unfortunately, that seems > to be where her > arthritis is the most active. She has pretty steadily used > predforte since > we first started seeing the ophthalmologist. So far, no > signs of the list > of horribles that come up with long term predforte use. I think > there might > have been one 8 week period when she was off the drops. > Anyway, most > recently, in January, we found out that the " good " eye was in > the worst > flare up in either eye that she has had since she was first > diagnosed. > Of course, it doesn't bother her at all since iritis is pretty > symptomlessunless its really, really bad. > > We had to switch rheumatologists in January as well. Our > dr., who we really > liked and who was in our corner, left CHOC for Kaiser. Now > we see the head > of the rheumatology practice at CHOC. K doesn't like her as much > - she > treats her like a kid with a Disease rather than a kid who > happens to have a > bad knee. She has been talking to us since January about using > methotextrate. K is terrified because the steroid shot was > an incredibly > painful, horrible experience for her. I'm terrified > because.... its > methotextrate. > > I guess this leads to my questions of the moment. Is it > unusual for the > disease to take this course? Do drs. typically prescribe > methotextrate for > kids with iritis rather than major joint issues? And what > should I be > asking if K's eyes don't resolve and the drs. start pushing > systemic drugs? > > I'm looking forward to " meeting " you all and learning more about > how to > handle K's JRA as she crosses into adolescence. > > Michele - mom to K - pauci & iritis > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 MIchele, I tend to be a bit blunt. If your eye doc has prescribed only steroid drops for all of this time, I would run away as fast as I could. Uveitis can make your daughter blind, and the drops can do lots of damage. (like glaucoma and cataracts) Some children have to be on heavy duty meds only for their eyes. Find yourself a good ped eye doctor who has experience with uveitis. Go to this website http://www.gabriellesvision.org./parents/parents.htm and click on FAQ. Dr. is a guru of uveitis and is in Boston. He is answering questions on the FAQ. You may even email him and ask his opinion of your daughter-but he can be more blunt than I am. My daughter was 10 when she got systemic jra. Many times she had no option on what medications she was on. As a mother, it is my responsibility to make those tough decisions so she can grow up strong and healthy. She didn't like it, but she got shots. Even daily painful shots. It was non debatable. I am the momma and she the child. And I love her more than the earth itself. Take care, (n, 22, systemic) On Mar 10, 2011, at 7:21 AM, audra wrote: > > Michele, > I have 2 kids with arthritis. Both were age 10 when they were diagnosed. > > I know the meds are scary, but her disease is scary. The goal in pediatric rheumatology is to " put the fire out " with meds, then wean off the meds. This gives the best chance of putting the disease into remission and stopping joint damage. Without proper treatment her knee is getting more damaged. > > I know very little about iritis. I do know that it can be very serious. From what I can remember it can even cause blindness. Is your opthamologist a pediatric arthritis specialist? If not you need to find one quickly. > > I know dealing with preteens and teens can be tricky. Unfortunately, it is our job to protect them and advocate for them until they are adults. Sometimes we have to force them into things they don't like. I had to hold down my 10 yo son on several occasions to give him injections. The guy couldn't walk he was in such bad pain, but was scared to death of the injection. Once he realized how wonderful the med was, he started to self inject and we worked together to make it as comfie as possible. > > As for the methotrexate. One kid had bad tummy issues and we had to discontinue it with in a month. The other took it for a year without missing a step. Each child is different. She really needs some type of disease modifier, quickly. > > I would recommend an arthritis camp this summer for you and your daughter. It is very fun and educational. > > Audra > 14 poly 07 > Peyton 13 poly 08 > > > > > > Hi all. I mostly just wanted to introduce myself - I joined the list a few > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 Michele, First off welcome! You have found an amazing group of parents who are all going through similar struggles. It is funny but I am in the OC as well, we live in Fountain Valley so not far from South County! My son Bradley was diagnosed Pauci/Oligo in 2008 when he was 4 years old. He is also ANA+ and developed Uveitis. When we took him in to the ped Ophtho his eyes were flared so badly that the doctor said it was a good thing we received the diagnosis when we did or he could have gone blind!! We had no idea that it could affect his eyes. We were first put on predforte eye drops and then when that wasn't helping bring the inflammation down, the Ophtho suggested going on methotrexate. I too was VERY afraid of putting my child on this medication but I needed to preserve his eyes as well as possible. We were on MTX for a couple of months and THAT wasn't keeping the inflammation down either. So the doctor suggested either Remicade or Humira. I again was very afraid of these 2 medications and in the end we ended up going with Humira. So far, Humira has been our wonder drug. Bradley's actual joints are completely fine, it's his eyes that have given us a run for our money. On the Humira his eyes were quiet for almost a year, then the Ophtho decided we could try to go off and see how he did. His eyes were quiet for about 5 months and then when we went back in February, his eyes were flared really badly. So back on the predforte drops, Mtx and Humira. We are now weaning off the drops but will continue to be on the Mtx and Humira for at least another 6 months. As much as it kills us to do injections and put the meds in his body, the alternative is MUCH scarier! I agree with someone who said be wary of just being on Predforte drops. Our doctor doesn't like kids to be on them for too long because of the risk of cataracts and Glacoma. I absolutely LOVE our ped Ophto and would recommend getting in to see him. He is in Orange by CHOC so a little drive but he is SO worth it! I can give you his contact info if you would like, just shoot me an email at: marie.seifert@... and I would be happy to. Know that you are NOT alone, you even have a close neighbor whose child is going through what you are! Keep up with this group, it was a lifesaver for us. Sorry this was so long but just wanted to share our story with you. marie (Mommy to Bradley: Pauci/Oligo, Uveitis and ANA+ > > Hi all. I mostly just wanted to introduce myself - I joined the list a few > days ago. After 2-1/2 years, I guess I am at a point where I am able to > acknowledge that my daughter's arthritis is, in fact, here to stay. > > My name is Michele. I live in South Orange County, CA, with 3 children - K > (12), C (10) and M (5), as well as my DH. My middle guy, C, has had a lot > of health problems growing up, but its my older DD, K, who was diagnosed > with pauciarticular (aka oglio) JRA/JIA (our dr says JRA still but I know > the more recent literature says JIA) about 2-1/2 years ago. > > Long story short, the arthritis started in her right knee, after about 3 > months, showed up in her left knee. It was extremely odd because her > initial knee pain showed up while she was on summer break from dance (K is a > semi-serious ballerina who dances nearly daily, even now - the studio closes > the last 2 weeks of August). We just couldn't figure out how she hurt > herself! Once we went through the rigmarole of seeing every dr. who might > have an interest in her knee, she was finally diagnosed with pauci. She > initially had a steroid injection, which resolved the problem for a time. > But her knees swell up and hurt from time to time, always ache/are stiff in > the " cold " winter months as well as when it is foggy. The dance seems to be > a sort of PT for her as she is exceedingly limber and in great shape - we > saw a physical therapist a couple times, but there wasn't much she could > really do for K. Right now, we only treat as needed with naproxen. > > The first casualty of this lovely disease was her aspiration of being a > professional ballerina. > > As I understand is not uncommon with girls with her version of JRA, she also > has the accompanying eye issues. Unfortunately, that seems to be where her > arthritis is the most active. She has pretty steadily used predforte since > we first started seeing the ophthalmologist. So far, no signs of the list > of horribles that come up with long term predforte use. I think there might > have been one 8 week period when she was off the drops. Anyway, most > recently, in January, we found out that the " good " eye was in the worst > flare up in either eye that she has had since she was first diagnosed. > Of course, it doesn't bother her at all since iritis is pretty symptomless > unless its really, really bad. > > We had to switch rheumatologists in January as well. Our dr., who we really > liked and who was in our corner, left CHOC for Kaiser. Now we see the head > of the rheumatology practice at CHOC. K doesn't like her as much - she > treats her like a kid with a Disease rather than a kid who happens to have a > bad knee. She has been talking to us since January about using > methotextrate. K is terrified because the steroid shot was an incredibly > painful, horrible experience for her. I'm terrified because.... its > methotextrate. > > I guess this leads to my questions of the moment. Is it unusual for the > disease to take this course? Do drs. typically prescribe methotextrate for > kids with iritis rather than major joint issues? And what should I be > asking if K's eyes don't resolve and the drs. start pushing systemic drugs? > > I'm looking forward to " meeting " you all and learning more about how to > handle K's JRA as she crosses into adolescence. > > Michele - mom to K - pauci & iritis > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 Thanks . I expect we see the same drs if you are going to CHOC as well. I'll email you off list. Michele > Re: Intro > > > Michele, > First off welcome! You have found an amazing group of > parents who are all going through similar struggles. It is > funny but I am in the OC as well, we live in Fountain Valley > so not far from South County! My son Bradley was diagnosed > Pauci/Oligo in 2008 when he was 4 years old. He is also ANA+ > and developed Uveitis. When we took him in to the ped Ophtho > his eyes were flared so badly that the doctor said it was a > good thing we received the diagnosis when we did or he could > have gone blind!! We had no idea that it could affect his > eyes. We were first put on predforte eye drops and then when > that wasn't helping bring the inflammation down, the Ophtho > suggested going on methotrexate. I too was VERY afraid of > putting my child on this medication but I needed to preserve > his eyes as well as possible. We were on MTX for a couple of > months and THAT wasn't keeping the inflammation down either. > So the doctor suggested either Remicade or Humira. I again > was very afraid of these 2 medications and in the end we > ended up going with Humira. So far, Humira has been our > wonder drug. Bradley's actual joints are completely fine, > it's his eyes that have given us a run for our money. On the > Humira his eyes were quiet for almost a year, then the Ophtho > decided we could try to go off and see how he did. His eyes > were quiet for about 5 months and then when we went back in > February, his eyes were flared really badly. So back on the > predforte drops, Mtx and Humira. We are now weaning off the > drops but will continue to be on the Mtx and Humira for at > least another 6 months. As much as it kills us to do > injections and put the meds in his body, the alternative is > MUCH scarier! I agree with someone who said be wary of just > being on Predforte drops. Our doctor doesn't like kids to be > on them for too long because of the risk of cataracts and > Glacoma. I absolutely LOVE our ped Ophto and would recommend > getting in to see him. He is in Orange by CHOC so a little > drive but he is SO worth it! I can give you his contact info > if you would like, just shoot me an email at: > marie.seifert@... and I would be happy to. > Know that you are NOT alone, you even have a close neighbor > whose child is going through what you are! Keep up with this > group, it was a lifesaver for us. Sorry this was so long but > just wanted to share our story with you. > > marie (Mommy to Bradley: Pauci/Oligo, Uveitis and ANA+ > > > > > > Hi all. I mostly just wanted to introduce myself - I > joined the list > > a few days ago. After 2-1/2 years, I guess I am at a point > where I am > > able to acknowledge that my daughter's arthritis is, in > fact, here to > > stay. > > > > My name is Michele. I live in South Orange County, CA, with 3 > > children - K (12), C (10) and M (5), as well as my DH. My > middle guy, > > C, has had a lot of health problems growing up, but its my > older DD, > > K, who was diagnosed with pauciarticular (aka oglio) > JRA/JIA (our dr > > says JRA still but I know the more recent literature says > JIA) about > > 2-1/2 years ago. > > > > Long story short, the arthritis started in her right knee, > after about > > 3 months, showed up in her left knee. It was extremely odd because > > her initial knee pain showed up while she was on summer break from > > dance (K is a semi-serious ballerina who dances nearly > daily, even now > > - the studio closes the last 2 weeks of August). We just couldn't > > figure out how she hurt herself! Once we went through the > rigmarole > > of seeing every dr. who might have an interest in her knee, she was > > finally diagnosed with pauci. She initially had a steroid > injection, > > which resolved the problem for a time. But her knees swell > up and hurt > > from time to time, always ache/are stiff in the " cold " > winter months > > as well as when it is foggy. The dance seems to be a sort > of PT for > > her as she is exceedingly limber and in great shape - we saw a > > physical therapist a couple times, but there wasn't much she could > > really do for K. Right now, we only treat as needed with naproxen. > > > > The first casualty of this lovely disease was her > aspiration of being > > a professional ballerina. > > > > As I understand is not uncommon with girls with her version of JRA, > > she also has the accompanying eye issues. Unfortunately, > that seems > > to be where her arthritis is the most active. She has > pretty steadily > > used predforte since we first started seeing the > ophthalmologist. So > > far, no signs of the list of horribles that come up with long term > > predforte use. I think there might have been one 8 week period when > > she was off the drops. Anyway, most recently, in January, we found > > out that the " good " eye was in the worst flare up in either > eye that > > she has had since she was first diagnosed. Of course, it doesn't > > bother her at all since iritis is pretty symptomless unless its > > really, really bad. > > > > We had to switch rheumatologists in January as well. Our > dr., who we > > really liked and who was in our corner, left CHOC for > Kaiser. Now we > > see the head of the rheumatology practice at CHOC. K > doesn't like her > > as much - she treats her like a kid with a Disease rather > than a kid > > who happens to have a bad knee. She has been talking to us since > > January about using methotextrate. K is terrified because > the steroid > > shot was an incredibly painful, horrible experience for her. I'm > > terrified because.... its methotextrate. > > > > I guess this leads to my questions of the moment. Is it > unusual for > > the disease to take this course? Do drs. typically prescribe > > methotextrate for kids with iritis rather than major joint issues? > > And what should I be asking if K's eyes don't resolve and the drs. > > start pushing systemic drugs? > > > > I'm looking forward to " meeting " you all and learning more > about how > > to handle K's JRA as she crosses into adolescence. > > > > Michele - mom to K - pauci & iritis > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 wrote: > My son is also ANA positive which puts him at risk of > developing iritis. Audra is right, it can cause blindness. > Our pediatric opthamologis told us that many times there are > no symptoms until the damage has occurred. sees his > opthalmologist every 4 months. We go every 8 weeks, on average. K and I call our pedi optho our " best friend. " Haha. Thank you so much for your kind words. It means a lot. Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 Audra wrote: > I have 2 kids with arthritis. Both were age 10 when they > were diagnosed. I'm sorry you have this x2. That makes it even worse. > I know the meds are scary, but her disease is scary. The > goal in pediatric rheumatology is to " put the fire out " with > meds, then wean off the meds. This gives the best chance of > putting the disease into remission and stopping joint damage. > Without proper treatment her knee is getting more damaged. Yes, this is a good point. > I know very little about iritis. I do know that it can be > very serious. From what I can remember it can even cause > blindness. Is your opthamologist a pediatric arthritis > specialist? If not you need to find one quickly. We do. > I know dealing with preteens and teens can be tricky. > Unfortunately, it is our job to protect them and advocate for > them until they are adults. Sometimes we have to force them > into things they don't like. I had to hold down my 10 yo son > on several occasions to give him injections. The guy > couldn't walk he was in such bad pain, but was scared to > death of the injection. Once he realized how wonderful the > med was, he started to self inject and we worked together to > make it as comfie as possible. I'm hoping we can try the oral route. But yes, if that is what it takes, she needs to be cared for. > As for the methotrexate. One kid had bad tummy issues and we > had to discontinue it with in a month. The other took it for > a year without missing a step. Each child is different. She > really needs some type of disease modifier, quickly. We see the dr. in early April. > I would recommend an arthritis camp this summer for you and > your daughter. It is very fun and educational. > Something to think about. Thanks. Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2011 Report Share Posted March 11, 2011 Michele, I wanted to introduce myself and welcome you to the board. I'm new here as well (a year or so) and have received such support and knowledge. I'm sorry that you're daughter is going through this. It's such a challenge emotionally and psychologically to be faced with the reality of a disease onset. My daughter was a strong, fast, very limber 8 year old when she was diagnosed with systemic JIA. She was in gymnastics at that point and we were contemplating stepping up her training as it seemed that was " her sport " . It came natural to her, and she was sooo good at it! Well, when the arthritis hit and affected her wrists, knees, and ankles the decision was made pretty quickly. She hasn't done gymnastics since October 2009, but she has been able to continue with soccer. Even when her systemic disease was not under good control she was pretty amazing on the soccer field, if I don't say so myself Now that she is being treated with a biologic and Methotrexate and an NSAID (thankfully is off the prednisone for now) she is back to health - albeit medicated health It's been a journey, and I was completely afraid of the medications. I never thought would be able to deal with injections - God, I never thought I'd be able to do it, as I frequently shared on this board. I still don't like it, but I love how well my daughter is doing now. freaked out at first with the injections and still doesn't like them, but she knows the meds are what allow her to function. I wanted to tell you that we did start with the oral Methotrexate because the thought of injections were just too much. I know that for many the oral is all that is needed. For us, we moved onto the injection within a couple of months. It is better absorbed and we had hopes that we could give less of it for that reason. When on oral had stomach pains and mouth sores; with injections she still has stomach pains - but not as bad since we are weaning back right now. Best of luck in your journey. I'll be thinking of your daughter as she navigates this new reality in her life. nn (mom to , 9 - will be 10 on March 31st! - systemic) > > Welcome to the list, Michele. You have found a great source > > of info and I have to say I agree with all of the responses > > you have received. Just want to add that when my son was on > > mtx he took it orally - no injections and he had wonderful > > results. That being said, many people find that the > > injections give better results but I did want to let you know > > that taking it in pill form could be an option. As has been > > stated, it does sound like moving on to DMARD's is the way to > > go. > > Yes, the pedi rheum. did say we may be able to try an oral med. Its > probably the best place to start, given how scared silly K is about shots > right now. > > > Your daughter may even be able to continue with dance > > once you get the disease under control. > > Well, she does dance 5-6 days/week right now. The disease has not yet > slowed her down much! But as it appears to be getting worse, rather than > going into remission as we have hoped for the past 2 years, it is clear that > her body does need some additional help. Who knows. Maybe if we can > trigger remission, she can pick her dreams of being a professional back up. > > > I know your daughter > > may not like it, but she is a person with a chronic illness, > > not just a bad knee. > > Yes. Wise words. *I* don't like it. I already have a chronically ill son > (GERD and the long term consequences thereof, asthma, sleep apnea, learning > disabilities). As I told my DH tonight, I guess its time to face the fact > that we hit that particular jackpot twice. Lucky us. > > > Treating the illness is what will keep > > her moving and she may even make it to remission if she > > continues to treat. I know my son was upset when the dr told > > him that disease was something he would be dealing with one > > way or another for the rest of his life. > > Yes. Sigh. Hard to see them face that reality. > > > One other thing, if you do begin mtx make sure she takes > > folic acid along with it. This will help to keep side effects > > to a minimum. The worst side effect had was mouth > > sores, which he kept under control by rinsing a few times a > > day with Listerine. > > Good to know. She already takes fish oil and a calcium supplement. Folic > acid can't hurt. > > > Once again, welcome and feel free to ask > > any questions, vent when you get frustrated, whatever you > > need. As you can see, you have found a supportive bunch! > > Michele ( 23, spondy) > > Thanks again. > > Michele (K, 12, pauci) > Quote Link to comment Share on other sites More sharing options...
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