Guest guest Posted November 6, 2008 Report Share Posted November 6, 2008 Hello I am sorry that Kineret has stopped working for you and that Toc. will be more successful for you. Out of interest, did you have any bad side effects with Kineret? My doc cut my MTX because he thought that with the high dose and then taking the Humira on top it might be causing the ulcerated throat so he halved the dose It appears to have done the trick as I have now had three more injections and no ulcers. Also the results of my blood test have shown that I have gone from a high reading of inflammation to a fairly low reading, which they are very pleased with, so I am now reducing my pred. the doc. wants me to get down to 7.5 but I really struggle below 10 - haven't managed it so far but never say never. I hope you feel better soon Take care Joan U.K. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2008 Report Share Posted November 6, 2008 Hello I am sorry that Kineret has stopped working for you and that Toc. will be more successful for you. Out of interest, did you have any bad side effects with Kineret? My doc cut my MTX because he thought that with the high dose and then taking the Humira on top it might be causing the ulcerated throat so he halved the dose It appears to have done the trick as I have now had three more injections and no ulcers. Also the results of my blood test have shown that I have gone from a high reading of inflammation to a fairly low reading, which they are very pleased with, so I am now reducing my pred. the doc. wants me to get down to 7.5 but I really struggle below 10 - haven't managed it so far but never say never. I hope you feel better soon Take care Joan U.K. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2008 Report Share Posted November 6, 2008 Hi, In regards to side effects with Kineret. I only experienced the standard site injection reaction the first few weeks on Kinerert. Other than that, I didn't have any side effects at all. Kineret was great for me for the first 18 months or so, it didn't do much for the fibro or for the Trigeminal Neuralgia, but I never expected it to, It really helped me with my inflammation and fevers, at first at least.. So, now I'm still on it, my fevers are still lower with it than without it, but the docs all think Toc will be somewhat better. Take care, Hang in there, On Thu, Nov 6, 2008 at 7:13 PM, Joan UK wrote: > Hello > > I am sorry that Kineret has stopped working for you and that Toc. will be > more successful for you. Out of interest, did you have any bad side effects > with Kineret? > > My doc cut my MTX because he thought that with the high dose and then > taking > the Humira on top it might be causing the ulcerated throat so he halved the > dose It appears to have done the trick as I have now had three more > injections and no ulcers. Also the results of my blood test have shown that > I have gone from a high reading of inflammation to a fairly low reading, > which they are very pleased with, so I am now reducing my pred. the doc. > wants me to get down to 7.5 but I really struggle below 10 - haven't > managed > it so far but never say never. > > I hope you feel better soon > > Take care > > Joan U.K. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2008 Report Share Posted November 6, 2008 Hi, In regards to side effects with Kineret. I only experienced the standard site injection reaction the first few weeks on Kinerert. Other than that, I didn't have any side effects at all. Kineret was great for me for the first 18 months or so, it didn't do much for the fibro or for the Trigeminal Neuralgia, but I never expected it to, It really helped me with my inflammation and fevers, at first at least.. So, now I'm still on it, my fevers are still lower with it than without it, but the docs all think Toc will be somewhat better. Take care, Hang in there, On Thu, Nov 6, 2008 at 7:13 PM, Joan UK wrote: > Hello > > I am sorry that Kineret has stopped working for you and that Toc. will be > more successful for you. Out of interest, did you have any bad side effects > with Kineret? > > My doc cut my MTX because he thought that with the high dose and then > taking > the Humira on top it might be causing the ulcerated throat so he halved the > dose It appears to have done the trick as I have now had three more > injections and no ulcers. Also the results of my blood test have shown that > I have gone from a high reading of inflammation to a fairly low reading, > which they are very pleased with, so I am now reducing my pred. the doc. > wants me to get down to 7.5 but I really struggle below 10 - haven't > managed > it so far but never say never. > > I hope you feel better soon > > Take care > > Joan U.K. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2008 Report Share Posted November 6, 2008 Hi, In regards to side effects with Kineret. I only experienced the standard site injection reaction the first few weeks on Kinerert. Other than that, I didn't have any side effects at all. Kineret was great for me for the first 18 months or so, it didn't do much for the fibro or for the Trigeminal Neuralgia, but I never expected it to, It really helped me with my inflammation and fevers, at first at least.. So, now I'm still on it, my fevers are still lower with it than without it, but the docs all think Toc will be somewhat better. Take care, Hang in there, On Thu, Nov 6, 2008 at 7:13 PM, Joan UK wrote: > Hello > > I am sorry that Kineret has stopped working for you and that Toc. will be > more successful for you. Out of interest, did you have any bad side effects > with Kineret? > > My doc cut my MTX because he thought that with the high dose and then > taking > the Humira on top it might be causing the ulcerated throat so he halved the > dose It appears to have done the trick as I have now had three more > injections and no ulcers. Also the results of my blood test have shown that > I have gone from a high reading of inflammation to a fairly low reading, > which they are very pleased with, so I am now reducing my pred. the doc. > wants me to get down to 7.5 but I really struggle below 10 - haven't > managed > it so far but never say never. > > I hope you feel better soon > > Take care > > Joan U.K. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2008 Report Share Posted November 7, 2008 , Has your doc mentioned the studies of IL-Trap? I found a trial on that one and it works like Kineret and the study specifically targets Stills Disease (along with a few others). Might be one to follow as well. It's still in trial phase though whereas TOC is before the FDA. Houston, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2008 Report Share Posted November 7, 2008 , Has your doc mentioned the studies of IL-Trap? I found a trial on that one and it works like Kineret and the study specifically targets Stills Disease (along with a few others). Might be one to follow as well. It's still in trial phase though whereas TOC is before the FDA. Houston, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2008 Report Share Posted November 7, 2008 , Has your doc mentioned the studies of IL-Trap? I found a trial on that one and it works like Kineret and the study specifically targets Stills Disease (along with a few others). Might be one to follow as well. It's still in trial phase though whereas TOC is before the FDA. Houston, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2008 Report Share Posted November 7, 2008 he's a stiffler and wants it fda approved before i start it, i wish i could start it now........ > , > > Has your doc mentioned the studies of IL-Trap? I found a trial on that > one and it works like Kineret and the study specifically targets Stills > Disease (along with a few others). Might be one to follow as well. > It's still in trial phase though whereas TOC is before the FDA. > > > Houston, TX > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2008 Report Share Posted November 7, 2008 he's a stiffler and wants it fda approved before i start it, i wish i could start it now........ > , > > Has your doc mentioned the studies of IL-Trap? I found a trial on that > one and it works like Kineret and the study specifically targets Stills > Disease (along with a few others). Might be one to follow as well. > It's still in trial phase though whereas TOC is before the FDA. > > > Houston, TX > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2008 Report Share Posted November 8, 2008 I read about this trial. It sounds like it has a lot of potential for Still's. Especially when some studies have shown Kineret to be good for many of us. It is hoped to beat out the issues with the short termed half life that Kineret experiences, as well as those awful local reactions we hear about. I got very excited until I read the exclusions. It looks like my Pulmonary Disease ( " Systemic involvement " and uncontrolled asthma) and Skin cnacer would put me out of the running. I may ask my RD about it anyway. But I am sure that she and my Pulmonologist will " suggest " that with my continuing ideosyncracies it might not be a good idea for me at this time. It sounds very promising. Interesting that this is the first time I have seen the term " Autoinflammatory Disease " versus " Autoimmune Disease " . Sounds like essentially the same thing except there is no identified antibody marker(s) for autoinflammatory. Would be nice if they discovered one for us. Make diagnosis a heck of a lot easier. Tom (Fuzzy) > > he's a stiffler and wants it fda approved before i start it, i wish i could > start it now........ > > > > > Has your doc mentioned the studies of IL-Trap? I found a trial on that > > one and it works like Kineret and the study specifically targets Stills > > Disease (along with a few others). Might be one to follow as well. > > It's still in trial phase though whereas TOC is before the FDA. > > > > > > Houston, TX > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2008 Report Share Posted November 10, 2008 Tom, I found the term autoinflammatory disease interesting as well. I truly feel that's what this is. There is such a correlation of the inflammation to bizarre things happening with me. I have an appt with my RD later this month and we are going to discuss the inflammation and some tricks to get it down. Just not working right now. One of the worst side effects of the disease for me is weight gain. When the inflammation is out of control, I gain massive weight in a short period. It's quite depressing to have no control. Houston, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2008 Report Share Posted November 10, 2008 Tom, I found the term autoinflammatory disease interesting as well. I truly feel that's what this is. There is such a correlation of the inflammation to bizarre things happening with me. I have an appt with my RD later this month and we are going to discuss the inflammation and some tricks to get it down. Just not working right now. One of the worst side effects of the disease for me is weight gain. When the inflammation is out of control, I gain massive weight in a short period. It's quite depressing to have no control. Houston, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2008 Report Share Posted November 10, 2008 Tom, I found the term autoinflammatory disease interesting as well. I truly feel that's what this is. There is such a correlation of the inflammation to bizarre things happening with me. I have an appt with my RD later this month and we are going to discuss the inflammation and some tricks to get it down. Just not working right now. One of the worst side effects of the disease for me is weight gain. When the inflammation is out of control, I gain massive weight in a short period. It's quite depressing to have no control. Houston, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2010 Report Share Posted September 3, 2010 I've been having regular fevers lately between 99 and 100. Varies but usually I get them in the evenings after 5pm. Has anyone else had this issue? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2010 Report Share Posted September 14, 2010 What are you taking for your HIV? Are you on meds or supplements? Fevers tend to mean you have an infection some where or your body is trying to get rid of something. Try to take immune boosters to fight what ever it is off. From: RICHARD <rjschusterman@...> Subject: Fevers cures for AIDS Date: Friday, September 3, 2010, 6:07 PM  I've been having regular fevers lately between 99 and 100. Varies but usually I get them in the evenings after 5pm. Has anyone else had this issue? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2010 Report Share Posted September 21, 2010 I had low grade fevers for quite a while, and found out that a root canal tooth was infected and needed to come out. After I had it pulled, I had more energy and.felt better than I had in quite a while! I had a fistula on my gum over the bad tooth that kinda looked like a pimple. So in my case it was easy to know what the cause was. But teeth problems are often the cause of infections, such as sinus infections. On Sep 14, 2010 2:08 PM, " Don " <donjuan69uni@...> wrote: > What are you taking for your HIV? Are you on meds or supplements? Fevers tend to mean you have an infection some where or your body is trying to get rid of something. Try to take immune boosters to fight what ever it is off. > > > > From: RICHARD <rjschusterman@...> > Subject: Fevers > cures for AIDS > Date: Friday, September 3, 2010, 6:07 PM > > > > > > > > > > > > > > > > > > I've been having regular fevers lately between 99 and 100. Varies but usually I get them in the evenings after 5pm. Has anyone else had this issue? > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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