Guest guest Posted September 4, 2008 Report Share Posted September 4, 2008 , My first 4 yrs or so with CLL, my temp. was a degree higher than normal and I could sweat buckets from my head just typing like this. I never doubted it was CLL-related. I also experienced a different kind of fatigue those years where I just had to lie down, period. Both these things went away around the time of my 3rd round of treatment. I've no idea why. But there are other conditions that can produce low fevers and fatigue so you probably should have a talk with your internist and see if he/she wants some tests done. See if things improve as the weather gets cooler—as I remember, they did with me. Ellen On Sep 4, 2008, at 7:48 PM, Suzanne Dolson wrote: > Yes, I feel well but seem to feel tired a lot. Not sure if it is > because of not getting enough sleep along with having a 2 and 3 year > old or if it is something else. I just always feel warm though. > > >> From: pkennedy16@... <pkennedy16@...> >> Subject: Re: Fever >> >> Date: Thursday, September 4, 2008, 6:53 PM >> >> My sister's and mine always run below 98.6. If I get up to 99 I know >> I'm sick. I suppose the opposite is also possible. Do you feel well? >> >> Pat >> >> >> ************ ** >> It's only a deal if it's where you want to go. Find your travel deal >> here. >> (http://information .travel.aol. com/deals? ncid=aoltrv00050 >> 000000047) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2008 Report Share Posted September 5, 2008 Thank you Ellen and Pat for your input. I think I will talk to my doctor about it. Like you said Ellen it could be the heat too. >> From: pkennedy16@... <pkennedy16@...> >> Subject: Re: Fever >> >> Date: Thursday, September 4, 2008, 6:53 PM >> >> My sister's and mine always run below 98.6. If I get up to 99 I know >> I'm sick. I suppose the opposite is also possible. Do you feel well? >> >> Pat >> >> >> ************ ** >> It's only a deal if it's where you want to go. Find your travel deal >> here. >> (http://information .travel.aol. com/deals? ncid=aoltrv00050 >> 000000047) > > ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2008 Report Share Posted September 6, 2008 I've noticed fever is either an indication of infection or it's a reaction to the treatment. My father is on his 3rd week of CAMPATH and has had severe chills and fever (103 F) which has hospitalized him twice since starting. I wonder if others are finding similar results or any research on the incidence of fever and CLL treatments? Thanks, > >> From: pkennedy16@... <pkennedy16@...> > >> Subject: Re: Fever > >> > >> Date: Thursday, September 4, 2008, 6:53 PM > >> > >> My sister's and mine always run below 98.6. If I get up to 99 I > know > >> I'm sick. I suppose the opposite is also possible. Do you feel > well? > >> > >> Pat > >> > >> > >> ************ ** > >> It's only a deal if it's where you want to go. Find your > travel deal > >> here. > >> (http://information .travel.aol. com/deals? ncid=aoltrv00050 > >> 000000047) > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2008 Report Share Posted September 6, 2008 > Just wanted to clear something up that maybe doesn't need it, Suzanne, but what I meant about the heat was that for me, the sweating was worse in the summer but that it was defintely CLL-related and was also there in winter. Now that I'm in remission, no matter how hot it gets I don't schvitz (sweat) from my head like I did back then! Rivulets pouring down my face just from typing! I took it with a smile, sure that I must be losing at least a pound!! I'll do almost anything for that! -Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 Sorry I'm just now chiming in, I've been gone for a week to my daughter's wedding. I have had a low grade fever for over three months now. My oncologist sent me to an infectious disease doc and ran all the blood work and concluded that it was CLL. Today I just finished my third treatment of Rituxan which has reduced the fever, still have a low grade fever it in the afternoon, but most mornings I am normal. I too have a real hard time in the heat. If I go outside (I live near Austin, TX), it takes me 30-40 minutes to cool down. I also have flushing at work and night sweats. I'm still have the heat problems, but do feel better as far as energy since the fever is reduced. I was getting as high as 101.8 at some times before. The local onc and MDA onc have agreed that I need to start FCR, but decided to give me four rounds of Rituxan to get me through the wedding, then install the portacath and start FCR. Due to my high reaction to the contrast dye for the CT scan, they premedicate me with steriods, and the usual benadryl and tylenol. I have not had any problems at all with it. Hope you're feeling better soon. I'm glad to finally hear that someone else is experiencing the fevers, I was beginning to worry that it still might be something else. Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2008 Report Share Posted September 11, 2008 Zingit, I tested poz over 20 years ago, but have probably been so for far longer than that. Stayed away from the doctors, the testing and the meds for 20 years and had no problems. Recently (late June) I got very dizzy, fell in the street and hit my head on the curb and ended up being hospitalized. I was dazed and confused, but not unconscious, and am told I was running fevers. I have no memory of what transpired for the entire month of July, but friends who saw me thought I was going to die. My brother intervened and had me put on some AIDS meds, and believe it or not, everything cleared up. I left the hospital and went to a rehab center. I had to be rehabilated to be able to walk. I lost my ability to walk, as well as about 30 pounds while I was hospitalized. Giving in to family and friends demands I am currently taking Atripla, but intend to wean off it in a month or two. If it were entirely up to me, I would have stayed off all meds once I got in rehab. I still haven't had any t-cell or viral load tests (unless some were performed while I was barely conscious, but I doubt it), as I don't believe in them. At first I refused any AIDS meds. One of the doctors yelled, like a witch, " If you don't take them YOU'RE GONNA DIE!!! " I thought it was easier to put up with one pill than with the medical curse. I can understand how just the diagnosis and the medical reaction can make a person sick and I'm wondering if this wasn't a factor in your disease. My advice would be to take something for a short time, but then stop testing and remove yourself from the witchcraft. Ed In a message dated 9/2/2008 6:04:04 P.M. Eastern Daylight Time, zingit23@... writes: I have been HIV positive since 2001. Stayed on meds for @ eight months. Quit take the meds because of the side effects, they made me feel worse. Have been doing well until now. Latest lab report shows my CD-4 at 51 l/UL and viral load 149,000. Had a fever with a headache for 3 weeks, temperature has been as high as 102.6 degrees. temperature usually goes up in the middle of the night. Have anybody out there experience the same problem if so, what was done to correct it. Really hate to go back on meds but it seems as though I'm running out of options thanking you in advance, zingit **************Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelist.com/trends?ncid=aolsty00050000000014) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2008 Report Share Posted September 11, 2008 Zingit, I tested poz over 20 years ago, but have probably been so for far longer than that. Stayed away from the doctors, the testing and the meds for 20 years and had no problems. Recently (late June) I got very dizzy, fell in the street and hit my head on the curb and ended up being hospitalized. I was dazed and confused, but not unconscious, and am told I was running fevers. I have no memory of what transpired for the entire month of July, but friends who saw me thought I was going to die. My brother intervened and had me put on some AIDS meds, and believe it or not, everything cleared up. I left the hospital and went to a rehab center. I had to be rehabilated to be able to walk. I lost my ability to walk, as well as about 30 pounds while I was hospitalized. Giving in to family and friends demands I am currently taking Atripla, but intend to wean off it in a month or two. If it were entirely up to me, I would have stayed off all meds once I got in rehab. I still haven't had any t-cell or viral load tests (unless some were performed while I was barely conscious, but I doubt it), as I don't believe in them. At first I refused any AIDS meds. One of the doctors yelled, like a witch, " If you don't take them YOU'RE GONNA DIE!!! " I thought it was easier to put up with one pill than with the medical curse. I can understand how just the diagnosis and the medical reaction can make a person sick and I'm wondering if this wasn't a factor in your disease. My advice would be to take something for a short time, but then stop testing and remove yourself from the witchcraft. Ed In a message dated 9/2/2008 6:04:04 P.M. Eastern Daylight Time, zingit23@... writes: I have been HIV positive since 2001. Stayed on meds for @ eight months. Quit take the meds because of the side effects, they made me feel worse. Have been doing well until now. Latest lab report shows my CD-4 at 51 l/UL and viral load 149,000. Had a fever with a headache for 3 weeks, temperature has been as high as 102.6 degrees. temperature usually goes up in the middle of the night. Have anybody out there experience the same problem if so, what was done to correct it. Really hate to go back on meds but it seems as though I'm running out of options thanking you in advance, zingit **************Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelist.com/trends?ncid=aolsty00050000000014) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2008 Report Share Posted September 11, 2008 If you don't take the meds the fact is you will die! You can also open another monster called CMV which if you have had chicken pox you carry the CMV virus which remains dormant until immunocompromised. When this unleashes you will get temps as high as 105. It can attack your brain, your stomach and your eyes. Take it from someone that has it! I went 10+ years not knowing I was positive heterosexually married and then became very sick. I was hospitalized with pneomonia and a CD4 count of 17 viral load of 151,000+. They put me on antibiotics after 2-weeks of being in rhe hospital they sent me home on antibiotics only. After 2-weeks of being out of the hospital I finally got an HIV doctor since the one they gave me was on vacation when I got out, and it took another week for me to get an appointment. He put me on Atripla along with the antibiotics that I was already on. After 2-more weeks I started getting temps of 102.5 to 104.8 I was checked back in the hospital, after some excrutiatly painful tests and a lung collapse they finally figured out 13 days later that I had CMV, a viral infection of which there is no cure. Anyone that has had chicken pox carries this infection, it just lays dormant and you never know it. They put me on Ganciclovir for 21 days (4 days in the hospital and 17 days at home) since this drug is only available through IV line I had to administer it to myself at home 2x a day. Talk about a drug that makes you sick - this one can cause cancer and is classified as a toxin. Unfortunately there is no other drug. If you don't take this one you go blind, it eats your brain and/or your stomach. I am now on the pill form called valgancilclovir until I can get my CD4 over 250 right now it is 84. Hopefully when my cd4 is up enough the CMV will go dormant again and I can get off the drug. The Atripla is for life and is the best thing that ever happened to me even with the side effects which really aren't that bad. From: aidsisover@... <aidsisover@...> Subject: Re: fever cures for AIDS Date: Thursday, September 11, 2008, 8:34 PM Zingit, I tested poz over 20 years ago, but have probably been so for far longer than that. Stayed away from the doctors, the testing and the meds for 20 years and had no problems. Recently (late June) I got very dizzy, fell in the street and hit my head on the curb and ended up being hospitalized. I was dazed and confused, but not unconscious, and am told I was running fevers. I have no memory of what transpired for the entire month of July, but friends who saw me thought I was going to die. My brother intervened and had me put on some AIDS meds, and believe it or not, everything cleared up. I left the hospital and went to a rehab center. I had to be rehabilated to be able to walk. I lost my ability to walk, as well as about 30 pounds while I was hospitalized. Giving in to family and friends demands I am currently taking Atripla, but intend to wean off it in a month or two. If it were entirely up to me, I would have stayed off all meds once I got in rehab. I still haven't had any t-cell or viral load tests (unless some were performed while I was barely conscious, but I doubt it), as I don't believe in them. At first I refused any AIDS meds. One of the doctors yelled, like a witch, " If you don't take them YOU'RE GONNA DIE!!! " I thought it was easier to put up with one pill than with the medical curse. I can understand how just the diagnosis and the medical reaction can make a person sick and I'm wondering if this wasn't a factor in your disease. My advice would be to take something for a short time, but then stop testing and remove yourself from the witchcraft. Ed In a message dated 9/2/2008 6:04:04 P.M. Eastern Daylight Time, zingit23 (DOT) com writes: I have been HIV positive since 2001. Stayed on meds for @ eight months. Quit take the meds because of the side effects, they made me feel worse. Have been doing well until now. Latest lab report shows my CD-4 at 51 l/UL and viral load 149,000. Had a fever with a headache for 3 weeks, temperature has been as high as 102.6 degrees. temperature usually goes up in the middle of the night. Have anybody out there experience the same problem if so, what was done to correct it. Really hate to go back on meds but it seems as though I'm running out of options thanking you in advance, zingit ************ **Psssst. ..Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelis t.com/trends? ncid=aolsty00050 000000014) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2008 Report Share Posted September 11, 2008 If you don't take the meds the fact is you will die! You can also open another monster called CMV which if you have had chicken pox you carry the CMV virus which remains dormant until immunocompromised. When this unleashes you will get temps as high as 105. It can attack your brain, your stomach and your eyes. Take it from someone that has it! I went 10+ years not knowing I was positive heterosexually married and then became very sick. I was hospitalized with pneomonia and a CD4 count of 17 viral load of 151,000+. They put me on antibiotics after 2-weeks of being in rhe hospital they sent me home on antibiotics only. After 2-weeks of being out of the hospital I finally got an HIV doctor since the one they gave me was on vacation when I got out, and it took another week for me to get an appointment. He put me on Atripla along with the antibiotics that I was already on. After 2-more weeks I started getting temps of 102.5 to 104.8 I was checked back in the hospital, after some excrutiatly painful tests and a lung collapse they finally figured out 13 days later that I had CMV, a viral infection of which there is no cure. Anyone that has had chicken pox carries this infection, it just lays dormant and you never know it. They put me on Ganciclovir for 21 days (4 days in the hospital and 17 days at home) since this drug is only available through IV line I had to administer it to myself at home 2x a day. Talk about a drug that makes you sick - this one can cause cancer and is classified as a toxin. Unfortunately there is no other drug. If you don't take this one you go blind, it eats your brain and/or your stomach. I am now on the pill form called valgancilclovir until I can get my CD4 over 250 right now it is 84. Hopefully when my cd4 is up enough the CMV will go dormant again and I can get off the drug. The Atripla is for life and is the best thing that ever happened to me even with the side effects which really aren't that bad. From: aidsisover@... <aidsisover@...> Subject: Re: fever cures for AIDS Date: Thursday, September 11, 2008, 8:34 PM Zingit, I tested poz over 20 years ago, but have probably been so for far longer than that. Stayed away from the doctors, the testing and the meds for 20 years and had no problems. Recently (late June) I got very dizzy, fell in the street and hit my head on the curb and ended up being hospitalized. I was dazed and confused, but not unconscious, and am told I was running fevers. I have no memory of what transpired for the entire month of July, but friends who saw me thought I was going to die. My brother intervened and had me put on some AIDS meds, and believe it or not, everything cleared up. I left the hospital and went to a rehab center. I had to be rehabilated to be able to walk. I lost my ability to walk, as well as about 30 pounds while I was hospitalized. Giving in to family and friends demands I am currently taking Atripla, but intend to wean off it in a month or two. If it were entirely up to me, I would have stayed off all meds once I got in rehab. I still haven't had any t-cell or viral load tests (unless some were performed while I was barely conscious, but I doubt it), as I don't believe in them. At first I refused any AIDS meds. One of the doctors yelled, like a witch, " If you don't take them YOU'RE GONNA DIE!!! " I thought it was easier to put up with one pill than with the medical curse. I can understand how just the diagnosis and the medical reaction can make a person sick and I'm wondering if this wasn't a factor in your disease. My advice would be to take something for a short time, but then stop testing and remove yourself from the witchcraft. Ed In a message dated 9/2/2008 6:04:04 P.M. Eastern Daylight Time, zingit23 (DOT) com writes: I have been HIV positive since 2001. Stayed on meds for @ eight months. Quit take the meds because of the side effects, they made me feel worse. Have been doing well until now. Latest lab report shows my CD-4 at 51 l/UL and viral load 149,000. Had a fever with a headache for 3 weeks, temperature has been as high as 102.6 degrees. temperature usually goes up in the middle of the night. Have anybody out there experience the same problem if so, what was done to correct it. Really hate to go back on meds but it seems as though I'm running out of options thanking you in advance, zingit ************ **Psssst. ..Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelis t.com/trends? ncid=aolsty00050 000000014) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2008 Report Share Posted September 12, 2008 In a message dated 9/12/2008 12:59:41 A.M. Eastern Daylight Time, dd051959@... writes: If you don't take the meds the fact is you will die! This hysteria is, in and of itself, dangerous. There is no evidence to support your statement. People might believe it if they hear it enough. The fact is there are hundreds of thousands of people who are HIV-positive and have been for years, who don't know their " status. " Why aren't they dying? If you believe in the virus you will surely die, with or without the drugs. You can also open another monster called CMV which if you have had chicken pox you carry the CMV virus which remains dormant until immunocompromised. If this is true, why would you want to take immunosuppressive drugs? **************Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelist.com/trends?ncid=aolsty00050000000014) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2008 Report Share Posted September 12, 2008 In a message dated 9/12/2008 12:59:41 A.M. Eastern Daylight Time, dd051959@... writes: If you don't take the meds the fact is you will die! This hysteria is, in and of itself, dangerous. There is no evidence to support your statement. People might believe it if they hear it enough. The fact is there are hundreds of thousands of people who are HIV-positive and have been for years, who don't know their " status. " Why aren't they dying? If you believe in the virus you will surely die, with or without the drugs. You can also open another monster called CMV which if you have had chicken pox you carry the CMV virus which remains dormant until immunocompromised. If this is true, why would you want to take immunosuppressive drugs? **************Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelist.com/trends?ncid=aolsty00050000000014) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2008 Report Share Posted September 13, 2008 I don't know why my responses are not getting to this list, but I am going to try to post directly through the group site: dd051959 WROTE: " If you don't take the meds the fact is you will die! " TROY WRITES: I appreciate the passion in wanting to intervene and help someone with questions, but this is simply NOT scientifically or medically true. This is the kind of scare-tactics that keep all of us stupid and unquestioning and the result of mainstream media and salesmen who are called " doctors. " More accurate statements to make might be: There are hundreds and hundreds and hundreds of people who are living without medication and show no symptoms or show any denigration of health. There are hundreds and hundreds and hundreds of people whose health was compromised and chose not to take medication and have lost their lives to common illnesses that fall under the heading of " AIDS. " Whether medication would have helped, or not, is not known since what people die from are the same things people have died from over hundreds of years. It's just called AIDS now. There are hundreds and hundreds and hundreds of people who are living WITH medication and show no symptoms or side effects or denigration of health. There are hundreds and hundreds and hundreds of people who are living WITH medication who show severe complications and even more who have died from the complications caused by medications and not from any illness. This particular statistic is the highest fact of all; that more people have died from taking medications than they have from NOT taking medications. Bottom line: Everything is a gamble. That's the only real answer that is factual. Here's what I did: I am taking meds because of the fear-tactics and the wide-spread pressure to take the drugs is overwhelming. I caved. But I made my agreement with myself that if I see any side effects that feel or show as complications, I am stopping meds immediately. It's been about 6 months now and so far, so good. I don't know if they are helping me or hurting me at this point. All I know is that I was getting better completely on my own after almost dying from pneumonia, so what the medications are doing, I don't know... except that they are the source of headaches and diahreah more often than I would like. Long-term effects on my kidneys and liver and other vital organs... I don't know. No one really knows until it's almost too late. So... The FDA is approving new drugs left and right without any serious or substantial testing, so for any of us to take the drugs is a gamble with our health. THAT's the fact. To state that " if you don't take the meds you will die " is just fear and not knowledge. There is no known way to measure the strength of an immune system. The CD4 counts are guesswork. There is no known way to confirm an indivual has HIV. The Antibody tests are total guesswork since no virus has actually been found/isolated. It's all a big mess and no one should speak conclusively on the subject. Troy EVERYTHING COCTEAUBOY: http://www.profilactic.com/mashup/CocteauBoy > > > > In a message dated 9/12/2008 12:59:41 A.M. Eastern Daylight Time, > dd051959@... writes: > > If you don't take the meds the fact is you will die! > > This hysteria is, in and of itself, dangerous. There is no evidence to > support your statement. People might believe it if they hear it enough. The > fact is there are hundreds of thousands of people who are HIV-positive and have > been for years, who don't know their " status. " Why aren't they dying? If > you believe in the virus you will surely die, with or without the drugs. > > You can also open another monster called CMV which if you have had chicken > pox you carry the CMV virus which remains dormant until immunocompromised. > If this is true, why would you want to take immunosuppressive drugs? > > > > **************Psssst...Have you heard the news? There's a new fashion blog, > plus the latest fall trends and hair styles at StyleList.com. > (http://www.stylelist.com/trends?ncid=aolsty00050000000014) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2008 Report Share Posted September 13, 2008 I don't know why my responses are not getting to this list, but I am going to try to post directly through the group site: dd051959 WROTE: " If you don't take the meds the fact is you will die! " TROY WRITES: I appreciate the passion in wanting to intervene and help someone with questions, but this is simply NOT scientifically or medically true. This is the kind of scare-tactics that keep all of us stupid and unquestioning and the result of mainstream media and salesmen who are called " doctors. " More accurate statements to make might be: There are hundreds and hundreds and hundreds of people who are living without medication and show no symptoms or show any denigration of health. There are hundreds and hundreds and hundreds of people whose health was compromised and chose not to take medication and have lost their lives to common illnesses that fall under the heading of " AIDS. " Whether medication would have helped, or not, is not known since what people die from are the same things people have died from over hundreds of years. It's just called AIDS now. There are hundreds and hundreds and hundreds of people who are living WITH medication and show no symptoms or side effects or denigration of health. There are hundreds and hundreds and hundreds of people who are living WITH medication who show severe complications and even more who have died from the complications caused by medications and not from any illness. This particular statistic is the highest fact of all; that more people have died from taking medications than they have from NOT taking medications. Bottom line: Everything is a gamble. That's the only real answer that is factual. Here's what I did: I am taking meds because of the fear-tactics and the wide-spread pressure to take the drugs is overwhelming. I caved. But I made my agreement with myself that if I see any side effects that feel or show as complications, I am stopping meds immediately. It's been about 6 months now and so far, so good. I don't know if they are helping me or hurting me at this point. All I know is that I was getting better completely on my own after almost dying from pneumonia, so what the medications are doing, I don't know... except that they are the source of headaches and diahreah more often than I would like. Long-term effects on my kidneys and liver and other vital organs... I don't know. No one really knows until it's almost too late. So... The FDA is approving new drugs left and right without any serious or substantial testing, so for any of us to take the drugs is a gamble with our health. THAT's the fact. To state that " if you don't take the meds you will die " is just fear and not knowledge. There is no known way to measure the strength of an immune system. The CD4 counts are guesswork. There is no known way to confirm an indivual has HIV. The Antibody tests are total guesswork since no virus has actually been found/isolated. It's all a big mess and no one should speak conclusively on the subject. Troy EVERYTHING COCTEAUBOY: http://www.profilactic.com/mashup/CocteauBoy > > > > In a message dated 9/12/2008 12:59:41 A.M. Eastern Daylight Time, > dd051959@... writes: > > If you don't take the meds the fact is you will die! > > This hysteria is, in and of itself, dangerous. There is no evidence to > support your statement. People might believe it if they hear it enough. The > fact is there are hundreds of thousands of people who are HIV-positive and have > been for years, who don't know their " status. " Why aren't they dying? If > you believe in the virus you will surely die, with or without the drugs. > > You can also open another monster called CMV which if you have had chicken > pox you carry the CMV virus which remains dormant until immunocompromised. > If this is true, why would you want to take immunosuppressive drugs? > > > > **************Psssst...Have you heard the news? There's a new fashion blog, > plus the latest fall trends and hair styles at StyleList.com. > (http://www.stylelist.com/trends?ncid=aolsty00050000000014) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Ruth, have you called & / otherwise contacted your doctor & / those medical professional responsible for your trial? I would contact my doctor immediately if I have real concerns before contacting a list. > > I am taking Revlimid in a clinical trial. I guess I have caught a cold. I feel terrible, coughing, sore throat, etc. My fever has been pretty steady at 100.8 degrees all day. I took some Tylenol and it has come down to 98.8. ........ Ruth > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Ruth - chances are that you'll get over it - However, we are taught to regard all fevers with great suspicion, especially those having to do with respiratory infections - I'm not sure what this has to do with the trial, my guess is that it is not the Revlimid that caused it, however you are involved in a medically supervised situation because of the trial. My advice would be that if it does not go away in a day or two, I would make a fuss. Don't be the last to know - click here for the latest news that will have people talking. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 I will talk to Houston tomorrow. I just hated the idea of going to the ER. It is such a zoo on the weekends. I have been able to keep it under a 100 with Tylenol. I will take care of the situation tomorrow. Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 I missed the earlier exchagnges, but it is important to remember that even if a fever stays down with tylenol, it is still a fever that needs to be treated as a fever. If someone is neutropenic, it should still prompt a call to your physician. Rick Furman -----Original Message----- From: Ruth Snider <rsnider@...> Subj: Re: Fever Date: Sun Dec 28, 2008 9:04 pm Size: 11K I will talk to Houston tomorrow. I just hated the idea of going to the ER. It is such a zoo on the weekends. I have been able to keep it under a 100 with Tylenol. I will take care of the situation tomorrow. Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Thanks Dr.Furman, I will see my family doctor and call my onc. first thing in the morning. Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 Ruth, Last year I had a reaction with the flu vaccine and had a temperature, I phoned the local hospital at 1.30 a.m. and I had a phone call back within 10 minutes from the duty nurse, she instructed me to take some paracetamol and phone her back if the temperature had not gone down in an hour, fortunatelly it did, next day I had a phone call from the surgery to see how I was and also another phone call from the duty doctor with a message to go straight to hospital if my neuts were low, which I knew that week had been ok. I was very well impressed by how many people checked my records and acted, which mean any fever with low neutrophils can not wait for the morning. I think they even contacted Prof. Hamblin in Bourmouth who was my consultant during that treatment. In The Great Western Hospital in Swindon the hospital I am having treatment now they have a system, any one with a temperature do not go to ER, but phone direct to the oncology unit and they deal with the problem there, as they think in our condition we should not be mixed with other ER people. I hope my experience helps in a small way. regards and Happy New Year Chonette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 Chonette, My mind boggles at the thought anyone would call from our local ER. I had a bad night sweats attack early this morning. My bed, pajamas, hair, everything was soaked. That is the first one that bad I have had. When I took my temp this a.m., it was normal. It has only went up one degree. My doctor says I have a bad ear infection and sinus infection. My lungs were clear. So I received two shots and a prescription for antibiotics. I already feel some better. Thanks to everyone for responding. Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 Ruth, it would behoove you, as well as anyone else in like situation, to get a 24h tel. no. to reach your PCP, as well as your hem/onc. I'm somewhat surprised that you did not have such contact as I would think the law of good practice would dictate it, if not then the law of torts! I liked Chonette's suggestion to make contact via the hem/onc dept/sec/unit. Also, I would not be so surprised to receive contact from a local ER -- as they may be " liable " to contact you in a timely manner as a standard of care. > > Chonette, My mind boggles at the thought anyone would call from our local ER. ...... Ruth > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2009 Report Share Posted November 17, 2009 What other symptoms? runny nose? cough? is she drinking enough water? I would not worry yet but, make sure she is getting enough water push that as much as you can give her Vitamin C and keep an eye on her. Maybe fruits and some broths or Chicken noodle soup type things. Sounds like her body is fighting something off. Stay away from dairy completely From: Trish Chapman <twotheark@...>Subject: FeverVaccinations Date: Tuesday, November 17, 2009, 8:47 PM  Hi, I know fevers were just discussed, but I didn't read all of the messages and for some reason, I can't access the group home page to search for the messages - says I am not a member. My 2 yr old DD has an armpit temp of 102.9. She is fairly subdued, but is still playing a little, being a little silly, and eating a little. When should I worry?? Thanks, Trish Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2009 Report Share Posted November 17, 2009 She probably has a true temp a degree higher than that. This is good. Fever is your friend. You can worry a little when she moans and is unhappy, but I would not give any Advil/Tylenol type meds--ever. No need to involve the doctor unless your antennae go up. Try to hold off on the food unless she begs, and just keep up the fluids and rest. Her fever may very likely go down over night, then spike back up the next night. It can be scary when they're little with a fever, I know. Winnie FeverVaccinations > Hi,> I know fevers were just discussed, but I didn't read all of the > messages and for some reason, I can't access the group home page > to search for the messages - says I am not a member. My 2 > yr old DD has an armpit temp of 102.9. She is fairly subdued, > but is still playing a little, being a little silly, and eating > a little. When should I worry??> > Thanks,> Trish> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2011 Report Share Posted July 7, 2011 , Hope your feeling a little better..I understand that this is a slow recovery process. I believe that this might be a flare-up due to your stress. Just try to take it slow. You are not alone..many of us suffer on a daily basis..some more than others. I was diagnosed with Reiter's two years ago and HLA-B27 positive. Thankfully I'm doing better than when I initially was diagnosed. My younger brother is experiencing the same symptoms that I did two years ago. Unfortunately he doesn't have any health insurance at the time and unable to receive medical care in the United States. We live on a border town with Mexico and he just visited a Rheumatologist. We are waiting for blood work results. Hopefully, he will get some relief from all the pain he's been experiencing. As well as you . Remember you are not alone, even if you feel overwhelmed with all your symptoms right know, you need to be patient to be able to overcome this disease. We cannot let this disease win the battle and we gotta keep strong. God bless you, Sent via BlackBerry from T-Mobile Quote Link to comment Share on other sites More sharing options...
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