Guest guest Posted September 1, 2003 Report Share Posted September 1, 2003 Caroline, I just know we are all so different. Thank goodness your doctor is willing to check different options so that they can find the answers you so need. I know that I still had daily spiking fevers in the first couple of years even on 60mg of Prednisone. It didn't change the diagnoses but was just very bad at the onset. I'm hoping they can give you something too because it is so very hard not knowing. Best of luck, Melt Any advice welcomed! > Hi everyone > > I went to see my rheumatologist today, following 6 weeks on a reducing > dose of Prednisolone - 30 mg down to 10 mg. The pred didn't help my > upper body joint aches, nor did it have any effect on my constant > temperature, which runs between 37.7 - 38.4 pretty well all of the > time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2003 Report Share Posted September 1, 2003 Hi Everybody It's Dave. I hope my fellow stilligans aren't in that much PAIN TONITE!! I hope. I've had high fevers now for about 2 yrs now. It can rise to 104.6 And then I hallucinate and say all these crazy stuff and I go nuts I sweat through everything until I bring it down. to 100.3 My usual is 100.7. I take Naprosyn to bring it down and it does. I'm currently on MTX and Humira. I'm on my fourth round of MTX this coming thursday. I'm also on Prednisone to. The Prednisone doesn't bring down my fever at all and I'm on 30 mgs. You should ask your rheumy anout Naprosyn. It brings my fevers down. I have these fevers everyday. I hope you feel better and try to have a restfull nite and PAIN FREE nite. Sincerely~~~Dave~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2003 Report Share Posted September 1, 2003 Hi Dave, wow, 2 years of constant fevers, that must be real difficult to deal with as I know when I get fevers whatever temp they are, they just make me feel lousy, real lousy so I can only imagine how bad you must feel day in and day out. I do hope that these fevers will subside and give you some relief soon. Take care, Marilyn Ontario ----Original Message Follows---- From: wave678@... I hope. I've had high fevers now for about 2 yrs now. It can rise to 104.6 And then I hallucinate and say all these crazy stuff and I go nuts I sweat through everything until I bring it down. to 100.3 My usual is 100.7. I take Naprosyn to bring it down and it does. I'm currently on MTX and Humira. I'm on my fourth round of MTX this coming thursday. I'm also on Prednisone to. The Prednisone doesn't bring down my fever at all and I'm on 30 mgs. You should ask your rheumy anout Naprosyn. It brings my fevers down. I have these fevers everyday. I hope you feel better and try to have a restfull nite and PAIN FREE nite. Sincerely~~~Dave~~~~ _________________________________________________________________ Tired of spam? Get advanced junk mail protection with MSN 8. http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2003 Report Share Posted September 2, 2003 Hi Dave, thanks for the drug info. I'll ask the prof about the Naprosyn. I think half the problem is the he only has about 12 people with AOSD and he's the expert! My GP hadn't even heard of it. Maybe I'll have to do more research from US sources. So far, everyone who's replied to my question has said that pred wasn't a huge help with the fevers. My prof has said that my not reacting to the pred indicates that I may have problems other than or instead of AOSD. Leaving me confused and not a little frustrated. What does the MTX and Humira do for you? Does anyone know of any literature I can get hold of about AOSD? Thanks again. Caroline 2 On Tuesday, September 2, 2003, at 02:15 AM, wave678@... wrote: > Hi Everybody It's Dave. I hope my fellow stilligans aren't in that > much PAIN > TONITE!! > I hope. I've had high fevers now for about 2 yrs now. It can rise to > 104.6 > And then I hallucinate and say all these crazy stuff and I go nuts I > sweat > through everything until I bring it down. to 100.3 My usual is 100.7. > I take > Naprosyn to bring it down and it does. I'm currently on MTX and > Humira. I'm on my > fourth round of MTX this coming thursday. I'm also on Prednisone to. > The > Prednisone doesn't bring down my fever at all and I'm on 30 mgs. > You should ask your rheumy anout Naprosyn. It brings my fevers down. I > have > these fevers everyday. I hope you feel better and try to have a > restfull nite > and PAIN FREE nite. Sincerely~~~Dave~~~~ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2003 Report Share Posted September 2, 2003 Caroline, There are tons of great research articles at the Stillsdisease.org site. Lynn Re: Any advice welcomed! Hi Dave, thanks for the drug info. I'll ask the prof about the Naprosyn. I think half the problem is the he only has about 12 people with AOSD and he's the expert! My GP hadn't even heard of it. Maybe I'll have to do more research from US sources. So far, everyone who's replied to my question has said that pred wasn't a huge help with the fevers. My prof has said that my not reacting to the pred indicates that I may have problems other than or instead of AOSD. Leaving me confused and not a little frustrated. What does the MTX and Humira do for you? Does anyone know of any literature I can get hold of about AOSD? Thanks again. Caroline 2 On Tuesday, September 2, 2003, at 02:15 AM, wave678@... wrote: > Hi Everybody It's Dave. I hope my fellow stilligans aren't in that > much PAIN > TONITE!! > I hope. I've had high fevers now for about 2 yrs now. It can rise to > 104.6 > And then I hallucinate and say all these crazy stuff and I go nuts I > sweat > through everything until I bring it down. to 100.3 My usual is 100.7. > I take > Naprosyn to bring it down and it does. I'm currently on MTX and > Humira. I'm on my > fourth round of MTX this coming thursday. I'm also on Prednisone to. > The > Prednisone doesn't bring down my fever at all and I'm on 30 mgs. > You should ask your rheumy anout Naprosyn. It brings my fevers down. I > have > these fevers everyday. I hope you feel better and try to have a > restfull nite > and PAIN FREE nite. Sincerely~~~Dave~~~~ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2003 Report Share Posted September 2, 2003 Acually Caraline 2 i beleive u prob could call him an expert if hes seen 12 Stills paitents lol course im kidding there probally isnt a stills expert anywhere well there could be a few around this site i beleive.I kno there quite a few here that also dont respond to the pred i was one of the one who did right away,hope u find sumthin to help you take care. d.Canada ----- Original Message ----- From: Caroline Baylis Stillsdisease Sent: Tuesday, September 02, 2003 5:12 AM Subject: Re: Any advice welcomed! Hi Dave, thanks for the drug info. I'll ask the prof about the Naprosyn. I think half the problem is the he only has about 12 people with AOSD and he's the expert! My GP hadn't even heard of it. Maybe I'll have to do more research from US sources. So far, everyone who's replied to my question has said that pred wasn't a huge help with the fevers. My prof has said that my not reacting to the pred indicates that I may have problems other than or instead of AOSD. Leaving me confused and not a little frustrated. What does the MTX and Humira do for you? Does anyone know of any literature I can get hold of about AOSD? Thanks again. Caroline 2 On Tuesday, September 2, 2003, at 02:15 AM, wave678@... wrote: > Hi Everybody It's Dave. I hope my fellow stilligans aren't in that > much PAIN > TONITE!! > I hope. I've had high fevers now for about 2 yrs now. It can rise to > 104.6 > And then I hallucinate and say all these crazy stuff and I go nuts I > sweat > through everything until I bring it down. to 100.3 My usual is 100.7. > I take > Naprosyn to bring it down and it does. I'm currently on MTX and > Humira. I'm on my > fourth round of MTX this coming thursday. I'm also on Prednisone to. > The > Prednisone doesn't bring down my fever at all and I'm on 30 mgs. > You should ask your rheumy anout Naprosyn. It brings my fevers down. I > have > these fevers everyday. I hope you feel better and try to have a > restfull nite > and PAIN FREE nite. Sincerely~~~Dave~~~~ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2003 Report Share Posted September 2, 2003 Dear Dave, hoping that you are feeling better very soon. I can definitely understand where the fevers are coming from. I feel mine come a lot from the prednisone and the constant sweats too. Dave, I had fevers all day yesterday. I was miserable. I was cold/hot...cold/hot...high fever and then it would go down. I never made it out of bed. I thought about you today too. Lets hope that something breaks soon friend. I really can sympathize with you. Rest and be well. Love, Sue #2 -- Re: Any advice welcomed! Hi Dave, wow, 2 years of constant fevers, that must be real difficult to deal with as I know when I get fevers whatever temp they are, they just make me feel lousy, real lousy so I can only imagine how bad you must feel day in and day out. I do hope that these fevers will subside and give you some relief soon. Take care, Marilyn Ontario ----Original Message Follows---- From: wave678@... I hope. I've had high fevers now for about 2 yrs now. It can rise to 104.6 And then I hallucinate and say all these crazy stuff and I go nuts I sweat through everything until I bring it down. to 100.3 My usual is 100.7. I take Naprosyn to bring it down and it does. I'm currently on MTX and Humira. I'm on my fourth round of MTX this coming thursday. I'm also on Prednisone to. The Prednisone doesn't bring down my fever at all and I'm on 30 mgs. You should ask your rheumy anout Naprosyn. It brings my fevers down. I have these fevers everyday. I hope you feel better and try to have a restfull nite and PAIN FREE nite. Sincerely~~~Dave~~~~ _________________________________________________________________ Tired of spam? Get advanced junk mail protection with MSN 8. http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2003 Report Share Posted September 3, 2003 Thanks for the advice. I think I shall spend the next week finding out all I can about different medications and then go and chat with the prof again. I'm not sure what some of the equivalent drugs are called in the UK, so will have to do some research. Everyone says how bad Pred is for the body, but is MTX any better? Feels awfully like we are stuck between a rock and a hard place! And I'd just like to say a big Thank You to everyone for all the help and advice you've sent. It makes a huge difference knowing that so many sympathetic people are only an email away. Love Caroline 2 On Wednesday, September 3, 2003, at 02:12 AM, pscarmen@... wrote: > Hi Caroline 2, > My Rheumatologist has two Stills patients....I'm one of them. We > experiment > together and now have found that MTX and Enbrel are the winning > combinations. > You know.....during my flares, I never took my temperature. I just > knew I > had a fever so didn't bother. I benefited greatly from Prednisone. > It seemed > to help every part of my body that needed help. But.....since it is > so bad for > the body, I am now, Prednisone free, as of yesterday. So far....so > good. > I wish you luck in finding the right combination to help you Caroline > 1 does > well with Humira. Maybe you should look into it.. > xxoo, > Mi. Carmen > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.