Guest guest Posted September 5, 2002 Report Share Posted September 5, 2002 Hi Janice, It sounds as if you are appreciating very much the change of season in New Zealand : ) I am glad that, for now at least, Elijah is feeling well. It's amazing, how you can predict so well when the next flare will arrive. I'm sure that it doesn't make it any easier though, knowing that soon your child will likely be feeling poorly again. I'm not able to be of much help with your specific question because in our case, my son takes oral steroid (prednisone) every day. We got very close in April but still have not been fully successful in weaning him off of it. His current dose is 12.5mgs per day. During that last flare, it was raised to 20mgs. and that helped to settle things down again. He also takes Methotrexate, indomethacin, hydroxychloroquine, folic acid, cytotec .... I think it was Oliver's son, Damien, in London ... who did the methylpred pulses. Maybe Vivien, Anton's son, in France, too? I hope that you will soon hear from others who are more familiar with this form of treatment. Does your son have joint symptoms (in multiple joints?) as well as the systemic features? Are his fevers as high as they used to be? Does he get the rash? What sort of pattern do his symptoms follow? Did he used to take steroids daily? I hope for the best for Elijah. He will be in our thoughts. Maybe this change to a 2 week schedule will make all the difference and he will have a longer period between flares of symptoms. Good Luck, Georgina ----- Original Message ----- From: Pierre Neame Hello all! Well I was wondering if anybody has children that are treated with methylpred? Elijah is well at the moment but it will only be another 2 weeks before he flares again. His paed told me 2 days ago that he wants to try methylpred every 2 weeks now instead of every 3 weeks. Eli's Stills disease seems to flare every 10 to 14 days. I need to know is this common for other parents? He also is on Mthxte (20mg) x 1 week followed by folic acid 5 days later. We cant seem to find a drug cocktail that seems to do the trick. What I'd do for 6 weeks of well being for the poor wee lad. A paed rheumy is being funded by an american drug company at the moment here in NZ and is trialing this drug on people with JRA so I've asked if Eli can become part of that trial. Will have to wait and see. Well look forward to hearing from yall soon. It is just hit spring here in NZ and its soooo delightful the blossom and daffodils, roll on summer. Thinking of you all with deep compassion. Regards Janice Neame(Elijah 7 on Sept 11) a milestone in my eyes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 Hi Janice, My son Damien (systemic, almost 8 yrs old) does have methypred infusions occasionally. He tends to have these as part of his normal treatment program to get his joints moving better, normally around 3 or 4 times a year. We find that they have a marked effect and when followed by an intensive physio and hydrotherapy routine for a week or so at the hospital it can make a huge difference to his mobility. Damien takes 20mg MTX via a subcutaneous injection every week and Prednisolone (9mg), Folic Acid, Calcichew, Voltarol and Ranitidine daily. He also has Infliximab infusions every 8 weeks. He hasn't really had a flare for around 3 months now (since starting the Infliximab) and we are now slowly weaning him off the prednisolone again. It has been a pretty tough year for us as he was flaring regularly and barely able to walk back in January but we have now got him back on his feet, he is running around again and is really so much better now. I don't recall anyone else mentioning being able to predict when their child flares as you can. Does Elijah take any Prednisolone? Best Wishes, Oliver -----Original Message-----From: Georgina [mailto:gmckin@...]Sent: 05 September 2002 23:13 Subject: Re: Elijah's Methylpred. Hi Janice, It sounds as if you are appreciating very much the change of season in New Zealand : ) I am glad that, for now at least, Elijah is feeling well. It's amazing, how you can predict so well when the next flare will arrive. I'm sure that it doesn't make it any easier though, knowing that soon your child will likely be feeling poorly again. I'm not able to be of much help with your specific question because in our case, my son takes oral steroid (prednisone) every day. We got very close in April but still have not been fully successful in weaning him off of it. His current dose is 12.5mgs per day. During that last flare, it was raised to 20mgs. and that helped to settle things down again. He also takes Methotrexate, indomethacin, hydroxychloroquine, folic acid, cytotec .... I think it was Oliver's son, Damien, in London ... who did the methylpred pulses. Maybe Vivien, Anton's son, in France, too? I hope that you will soon hear from others who are more familiar with this form of treatment. Does your son have joint symptoms (in multiple joints?) as well as the systemic features? Are his fevers as high as they used to be? Does he get the rash? What sort of pattern do his symptoms follow? Did he used to take steroids daily? I hope for the best for Elijah. He will be in our thoughts. Maybe this change to a 2 week schedule will make all the difference and he will have a longer period between flares of symptoms. Good Luck, Georgina ----- Original Message ----- From: Pierre Neame Hello all! Well I was wondering if anybody has children that are treated with methylpred? Elijah is well at the moment but it will only be another 2 weeks before he flares again. His paed told me 2 days ago that he wants to try methylpred every 2 weeks now instead of every 3 weeks. Eli's Stills disease seems to flare every 10 to 14 days. I need to know is this common for other parents? He also is on Mthxte (20mg) x 1 week followed by folic acid 5 days later. We cant seem to find a drug cocktail that seems to do the trick. What I'd do for 6 weeks of well being for the poor wee lad. A paed rheumy is being funded by an american drug company at the moment here in NZ and is trialing this drug on people with JRA so I've asked if Eli can become part of that trial. Will have to wait and see. Well look forward to hearing from yall soon. It is just hit spring here in NZ and its soooo delightful the blossom and daffodils, roll on summer. Thinking of you all with deep compassion. Regards Janice Neame(Elijah 7 on Sept 11) a milestone in my eyes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2002 Report Share Posted September 10, 2002 Hi Oliver, It's hard to believe that Damien will already be 8 years old in less than a month. And has it been 3 months already, since he began the Remicade treatment? There have been so many ups and downs over the years but it makes me happy to hear that, at least for the time being, Damien is doing well. Send him our love. Aloha, Georgina ----- Original Message ----- From: Oliver Skudder My son Damien (systemic, almost 8 yrs old) does have methypred infusions occasionally. He tends to have these as part of his normal treatment program to get his joints moving better, normally around 3 or 4 times a year. We find that they have a marked effect and when followed by an intensive physio and hydrotherapy routine for a week or so at the hospital it can make a huge difference to his mobility. Damien takes 20mg MTX via a subcutaneous injection every week and Prednisolone (9mg), Folic Acid, Calcichew, Voltarol and Ranitidine daily. He also has Infliximab infusions every 8 weeks. He hasn't really had a flare for around 3 months now (since starting the Infliximab) and we are now slowly weaning him off the prednisolone again. It has been a pretty tough year for us as he was flaring regularly and barely able to walk back in January but we have now got him back on his feet, he is running around again and is really so much better now. I don't recall anyone else mentioning being able to predict when their child flares as you can. Does Elijah take any Prednisolone? Best Wishes, Oliver Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 Hi Georgina, I'll pass on your regards when I see him later today. Yup, the Remicade still seems to be working and of course it is so great to have him running around like a normal kid again (shame about his left hip though as it is damaged and there doesn't seem to be much we can do with it). Having the Remicade infusions every 8 weeks now is quite a bonus in comparison with the other option of twice-weekly shots of Enbrel so right now I'm rather glad that we are unable to get it because of the shortage! We have just dropped his prednisolone to 8mg daily - hopefully this reduction can continue..... I hope Josh is well Regards,. Oliver Re: Elijah's Methylpred. Hi Oliver, It's hard to believe that Damien will already be 8 years old in less than a month. And has it been 3 months already, since he began the Remicade treatment? There have been so many ups and downs over the years but it makes me happy to hear that, at least for the time being, Damien is doing well. Send him our love. Aloha, Georgina ----- Original Message ----- From: Oliver Skudder My son Damien (systemic, almost 8 yrs old) does have methypred infusions occasionally. He tends to have these as part of his normal treatment program to get his joints moving better, normally around 3 or 4 times a year. We find that they have a marked effect and when followed by an intensive physio and hydrotherapy routine for a week or so at the hospital it can make a huge difference to his mobility. Damien takes 20mg MTX via a subcutaneous injection every week and Prednisolone (9mg), Folic Acid, Calcichew, Voltarol and Ranitidine daily. He also has Infliximab infusions every 8 weeks. He hasn't really had a flare for around 3 months now (since starting the Infliximab) and we are now slowly weaning him off the prednisolone again. It has been a pretty tough year for us as he was flaring regularly and barely able to walk back in January but we have now got him back on his feet, he is running around again and is really so much better now. I don't recall anyone else mentioning being able to predict when their child flares as you can. Does Elijah take any Prednisolone? Best Wishes, Oliver Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 Hi Oliver, It's great to hear that things are working out so well for Damien. Maybe now there won't be any need to even try Enbrel, if the response to Remicade continues to be favorable. Which I hope it is. Amazing, how just a few years back we would run out of treatment options so much more quickly. I hope that this round of prednisolone tapering will be successful for Damien. For both of our boys : ) Aloha, Georgina ----- Original Message ----- From: Oliver Skudder Hi Georgina, I'll pass on your regards when I see him later today. Yup, the Remicade still seems to be working and of course it is so great to have him running around like a normal kid again (shame about his left hip though as it is damaged and there doesn't seem to be much we can do with it). Having the Remicade infusions every 8 weeks now is quite a bonus in comparison with the other option of twice-weekly shots of Enbrel so right now I'm rather glad that we are unable to get it because of the shortage! We have just dropped his prednisolone to 8mg daily - hopefully this reduction can continue..... I hope Josh is well Regards,. Oliver -----Original Message-----From: Georgina [mailto:gmckin@...]Hi Oliver, It's hard to believe that Damien will already be 8 years old in less than a month. And has it been 3 months already, since he began the Remicade treatment? There have been so many ups and downs over the years but it makes me happy to hear that, at least for the time being, Damien is doing well. Send him our love. Aloha, Georgina ----- Original Message ----- From: Oliver Skudder My son Damien (systemic, almost 8 yrs old) does have methypred infusions occasionally. He tends to have these as part of his normal treatment program to get his joints moving better, normally around 3 or 4 times a year. We find that they have a marked effect and when followed by an intensive physio and hydrotherapy routine for a week or so at the hospital it can make a huge difference to his mobility. Damien takes 20mg MTX via a subcutaneous injection every week and Prednisolone (9mg), Folic Acid, Calcichew, Voltarol and Ranitidine daily. He also has Infliximab infusions every 8 weeks. He hasn't really had a flare for around 3 months now (since starting the Infliximab) and we are now slowly weaning him off the prednisolone again. It has been a pretty tough year for us as he was flaring regularly and barely able to walk back in January but we have now got him back on his feet, he is running around again and is really so much better now. I don't recall anyone else mentioning being able to predict when their child flares as you can. Does Elijah take any Prednisolone? Best Wishes, Oliver Quote Link to comment Share on other sites More sharing options...
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