Guest guest Posted August 31, 1999 Report Share Posted August 31, 1999 <!doctype html public " -//w3c//dtd html 4.0 transitional//en " > <html> Hi Rena, <p>I can imagine how stressful a day it must have been for you and Elliot. I'm glad you made it through okay and that the news wasn't as bad as it might have been. Poor little guy. That must have been a rough procedure. These things can be so physically and emotionally draining, for the parents too. <p>If I'm not mistaken, 's daughter Leigh Ann is currently on cyclosporine and I think a few other children have used it in the past. Maybe they'll be able to write some more on this topic. My son's doctor has mentioned it to us once or twice during Josh's flares but for whatever reason, he wasn't talking about the oral dosing form. He wanted us to try intravenous cyclosporine, which meant flying off our island once a month for several days at a time and checking into the hospital in Oahu. That would have been very difficult for us to schedule and arrange and I didn't quite think that Josh's health warranted it. If they could have done the same treatment here on Maui, I might have been more likely to try it. Unfortunately, there are no pediatric rheumatologists here. They wanted to follow him very closely. As it turns out, we increased the dose of prednisone to get rid of the flare, instead. Our familiar routine. <p>I've heard that some have had great success with the treatments. Again, it's another one of those drugs that has a long list of possible, potentially dangerous side effects and you really have to define how severe the symptoms of illness are, know what potential gains and improvements you may get from the meds. and hope that it all balances out well, in the best interests of the child. Good luck with deciding. I hope other parents will add some input on this, too, as my experience is quite limited. <p>Take Care, <br>Georgina <p>RenaPT@... wrote: <blockquote TYPE=CITE>From: RenaPT@... <p>Friday was a tough day. Elliot went for an MRI & nbsp; which was negative for AVN- <br>that was a relief. But the Doctor saw something light up on the film which he <br>was concerned about- possible infection/ septic hip. Anyway Elliot went for <br>aspiration of the joint under CT scan. Fortunately no pus or fluid came out. <br>The doctor thinks Eli might have had a bone bruise. He said that he didn't <br>know what it was but he could tell me what it wasn't. Semi-reassuring. Eli <br>was a champ but it was so difficult watching him lay there weeping. It <br>reallyaffected me. <br>Anyway, Eli's lab results appear to be slipping and the rheumatologist feels <br>the next step may be cyclosporins. Does anyone have any experience with it? <br>Rena</blockquote> </html> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 1999 Report Share Posted September 1, 1999 RENA My daughter Leigh-Ann has been taking cyclosporine for the last 11 months with great success. She was taking metho before and the drug was just not effective enough to calm the disease down. Her Ped. even pushed the metho to the highest dose possible, but to no avail. Since taking cyclo she has had a much more active life, she was in a wheelchair before taking cyclo, and could not walk, the cyclo made a huge difference to her. The disease is quite and has been for the last 10 months, thanks to cyclo. She has had no side effects todate, and I'm sure you've probably done some research on this drug, but without this drug I don't know where she would be. If I could be of any further help, please don't hesitate to ask. -Coady ---------- > From: RenaPT@... > JRA-listonelist > Subject: [ ] cyclosporins > Date: Tuesday, August 31, 1999 12:23 AM > > From: RenaPT@... > > Friday was a tough day. Elliot went for an MRI which was negative for AVN- > that was a relief. But the Doctor saw something light up on the film which he > was concerned about- possible infection/ septic hip. Anyway Elliot went for > aspiration of the joint under CT scan. Fortunately no pus or fluid came out. > The doctor thinks Eli might have had a bone bruise. He said that he didn't > know what it was but he could tell me what it wasn't. Semi-reassuring. Eli > was a champ but it was so difficult watching him lay there weeping. It > reallyaffected me. > Anyway, Eli's lab results appear to be slipping and the rheumatologist feels > the next step may be cyclosporins. Does anyone have any experience with it? > Rena > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 1999 Report Share Posted September 3, 1999 Dear , It's encouraging to hear that Leigh-Ann is doing well with the cyclosporines. Does she continue with methotrexate as well, and have you been able to reduce the prednisone while using the cyclosporine? Do you adjust the dosage of the cyclosporine or has your daughter been taking a consistent dose? On another topic, Elliot, who is 5, is becoming more aware that he is different from his brother and other children, and will often ask how much longer do I have to take medication? How have you ( & others) responded to such questions? Last year, Elliot told his pre-school teacher that the reason he is the smallest in the class is because he has the biggest cheeks (as if to say all his growth goes there, which thanks to prednisone is somewhat true). I feel badly that it bothers Elliot that he is the smallest in his class. Rena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 1999 Report Share Posted September 4, 1999 Rena, Leigh-Ann has continued on the metho but starting next month (October) I will be reducing her amount by 2.5 mg, she currently takes 10 mg once a week and yes we were able to also reduce the prednisone. As of two weeks ago she is steroid free. It took a really long time to get her stabilized with the prednisone, but I'm glad to say (and a little scared) that she is finally been weaned off. The cyclosporine has pretty much been a consistent dose. We tried once to increase it from 75 mg per day to 100 mg per day but she could not tolerate it. So as of right now she takes 25 mg in the morning and 50 mg in the evening. She also takes 1/2 a 375 mg tablet of naprozen twice a day and I also give her a stomach protector. This is actually the absolute best she has been in approx. 3 years. I contribute her good health to the cyclosporine. You asked about being different, well Leigh-Ann is the youngest of two children and fortunately she has accepted her arthritis and small frame. With regards to meds she hates them, always did, and I figure will always resist me but knows that without the drugs, she would not be able to function. As you know I am also dealing with some health problems myself, so when she complains about the drugs, I tell her she is my mentor, and how I admire her for taking all these drugs because I want to quit taking medications myself. I don't know what else to say, other than keep on encouraging Elliott and I know that it may not be any consolation to him, but Leigh-Ann is very small, she is 13 and weighs only 73 pounds and is 4 feet 5 inches tall, and is also the smallest in her class. We tell her how much we love her all the time, and it is really important for her and other children with special needs to hear it. I hope this helped. -Coady ---------- > From: RenaPT@... > onelist > Subject: Re: [ ] cyclosporins > Date: Friday, September 03, 1999 12:54 AM > > From: RenaPT@... > > Dear , > > It's encouraging to hear that Leigh-Ann is doing well with the cyclosporines. > Does she continue with methotrexate as well, and have you been able to reduce > the prednisone while using the cyclosporine? > Do you adjust the dosage of the cyclosporine or has your daughter been taking > a consistent dose? > > > On another topic, Elliot, who is 5, is becoming more aware that he is > different from his brother and other children, and will often ask how much > longer do I have to take medication? How have you ( & others) responded > to such questions? > > Last year, Elliot told his pre-school teacher that the reason he is the > smallest in the class is because he has the biggest cheeks (as if to say all > his growth goes there, which thanks to prednisone is somewhat true). I feel > badly that it bothers Elliot that he is the smallest in his class. > > Rena > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 1999 Report Share Posted September 5, 1999 , I hope you and your daughter are doing alright. Your letter is encouraging. How much steroids was Leigh-Ann on when you started her on cyclosporines, and how long did it take her to get off the steroids? Be well. Rena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 Rena Leigh-Ann is doing very well right now. When she started taking cyclosporine she was on 10 mgs per day. Her systemic was so out of control, high temperatures, vomiting and the like. It did take about a year to get her off the steroids, but it was worth the long time-frame. She would flare before if I tried to reduce the steroids or even eliminate them, but since the cyclosporine, she is doing so well. You must also remember that every child is different and that it doesn't always take that long to reduce and eliminate steroids. Leigh-Ann has been a long-time user of steroids, so her body was actually addicted to the drug. I hope I have helped in some way to alleviate your concerns. S-C ---------- > From: RenaPT@... > onelist > Subject: Re: [ ] cyclosporins > Date: Sunday, September 05, 1999 1:49 AM > > From: RenaPT@... > > , > > I hope you and your daughter are doing alright. > Your letter is encouraging. > How much steroids was Leigh-Ann on when you started her on cyclosporines, and > how long did it take her to get off the steroids? > > Be well. > > Rena > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 Here's an article that discusses mycotoxins and cyclosporins. Hope this helps. http://www.arthritistrust.org/Articles/Mycotoxin%20In%20Human%20Health.pdf ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 Thank you for posting that. Thats a really interesting article. Really worth reading, it makes quite a few points that are important. Does anybody have a copy of AV Constantini's book? Quote Link to comment Share on other sites More sharing options...
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