Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 Emilie, It does sound like is exibiting symptoms of systemic.Fatigue and general not feeling well are common and just part of the disease.The rash is often times raised hives but don't rule out some sort of allergic reaction to something or even a viral rash.If the rash is itchy the Benadryl will help but if it's a systemic rash it will not make the rash go away. You have me concerned about giving Enbrel every 10 days.Thats just not how it's done and could very well be why things aren't going well right now.It should be given as half the total dose 2x a week or the whole dose 1x a week. The best advise I can give is to call the rheumy and let them know whats going on. Hugs Becki and 6 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 Emilie, n is 15 and has had systemic for five years. When the disease is more active then we have found that the rash is more prominent. Her rash " cold from hell " , and it put her in somewhat of a flare. The rash was everywhere with terrible fatigue, and the classical " black circles under the eyes. " I have started her back on the zyrtec twice a day for the rash and itchiness; it was prescribed by a ped. dermatologist. It really helps. Now that the rash has appeared I will faithfully keep her on the zyrtec until all itchiness is gone-maybe a month or longer. Sometimes we have just muddled thru the fatigue and malaise , and other times when it gets to be too much we have had to start on prednisone. The doctor this time gave her the option of going on prednisone or not, so we are going day by day without it. She is much improved, and I think it was a flare from the cold, and that it is generally leaving along with the cold. I hope I don't eat my words on that later. We have also found that during a flare there is little appetite and there is usually weight loss. At onset, n lost 12 pounds off of her bulky 65 pounds at ten years old. The rash can be anywhere and it can be raised or under the skin. It can also be hive-like. n's is most pronounced on her back , thighs, and bottom. She also gets it all between her fingers. I hope this helps. (n, 15, systemic) systemic rashes > > > > Hi all, > > I have a quick question for you. When was first diagnosed > with JRA her rheumy questioned wether or not her onset was systemic. > She originally presented with a extremely high fever and > considerable knee pain, along with a rash. Before we got it under > control we had some isssues with bowel function and also appetite > and weight loss. At this time she also had a bumpy sort of rash all > over her body. Lately I have noticed that the rash is back and it > coincides with her complaining of ankle and knee pain. I was > wondering if anyone has any knowledge about the rashes and if this > could possible be part of the arthritis. She has also been > complaining of generally not feeling well lately with dark circles > under her eyes and low grade fevers on and off. I have increased her > enbrel to every 10 days. That seems to be helping some. But I am at > a general loss as for what to do for the malaise and the itchiness > of the rash. I really do not want to give her benadryl if I don't > have to. I am sorry that I have not been able to keep up on posts > lately. I am taking and advanced Emergency Medical Technician class > and it is taking up most of my time lately. One more month to go and > things should get back to semi-normal... I appreciate any responses > that I might get.. > > Thanks, > Emilie (mom to 5, poly, systemic?) > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 .. thanks.. When was first diagnosed she was about 28 pounds.. She then proceeded to drop down to 20. At five she finally ranges between 40-44lbs. I was reading posts the other day and read someone talking about the fever and rash that went along with systemic and that is when it clicked and I remembered what her rheumy said. The fevers were bad last weekend.. she would go from normal to 103 is what i think she peaked at. The next day she was fine. She is not set to go back to the docs until Dec 2nd, but if this keeps up I think we are going to go back sooner. She also has some fluid on her knees. The worst thing is she does not let me know how bad it is and kind of just muddles through on her own.. Thanks for the info.. Emilie & 5 poly, systemic? systemic rashes > > > > Hi all, > > I have a quick question for you. When was first diagnosed > with JRA her rheumy questioned wether or not her onset was systemic. > She originally presented with a extremely high fever and > considerable knee pain, along with a rash. Before we got it under > control we had some isssues with bowel function and also appetite > and weight loss. At this time she also had a bumpy sort of rash all > over her body. Lately I have noticed that the rash is back and it > coincides with her complaining of ankle and knee pain. I was > wondering if anyone has any knowledge about the rashes and if this > could possible be part of the arthritis. She has also been > complaining of generally not feeling well lately with dark circles > under her eyes and low grade fevers on and off. I have increased her > enbrel to every 10 days. That seems to be helping some. But I am at > a general loss as for what to do for the malaise and the itchiness > of the rash. I really do not want to give her benadryl if I don't > have to. I am sorry that I have not been able to keep up on posts > lately. I am taking and advanced Emergency Medical Technician class > and it is taking up most of my time lately. One more month to go and > things should get back to semi-normal... I appreciate any responses > that I might get.. > > Thanks, > Emilie (mom to 5, poly, systemic?) > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 Don't be afraid to call them with your concerns. Keep a diary of the fevers and everything else. Then you may find a pattern. We have kept a diary for five years now, and there are many times I go back to refer to it. Don't rely on your memory, this disease can make everything a blur. (n, 15, systemic) systemic rashes > > > > > > > > > > Hi all, > > > > I have a quick question for you. When was first diagnosed > > with JRA her rheumy questioned wether or not her onset was systemic. > > She originally presented with a extremely high fever and > > considerable knee pain, along with a rash. Before we got it under > > control we had some isssues with bowel function and also appetite > > and weight loss. At this time she also had a bumpy sort of rash all > > over her body. Lately I have noticed that the rash is back and it > > coincides with her complaining of ankle and knee pain. I was > > wondering if anyone has any knowledge about the rashes and if this > > could possible be part of the arthritis. She has also been > > complaining of generally not feeling well lately with dark circles > > under her eyes and low grade fevers on and off. I have increased her > > enbrel to every 10 days. That seems to be helping some. But I am at > > a general loss as for what to do for the malaise and the itchiness > > of the rash. I really do not want to give her benadryl if I don't > > have to. I am sorry that I have not been able to keep up on posts > > lately. I am taking and advanced Emergency Medical Technician class > > and it is taking up most of my time lately. One more month to go and > > things should get back to semi-normal... I appreciate any responses > > that I might get.. > > > > Thanks, > > Emilie (mom to 5, poly, systemic?) > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 Becki.. s Rheumy originally had her on it once a week, then we stretched the dose out to once every 10 days once we had her stabilized. Then after eight weeks he changed it to every two weeks, then again he wanted to try every 3 weeks after that. The three week thing did not work at all. We were doing the every 2 week shot until she started feeling crappy again. I then went back to every 10 days. She was doing so good for a while. I know the weather changing has something to do with all this. I really do not want to have to go back to the weekly shot. She really hates needles now. I'm at one of those stages where i feel like I am beating my head against the wall and wish I could just take all this pain away from her.. thanks. Emilie Re: systemic rashes Emilie, It does sound like is exibiting symptoms of systemic.Fatigue and general not feeling well are common and just part of the disease.The rash is often times raised hives but don't rule out some sort of allergic reaction to something or even a viral rash.If the rash is itchy the Benadryl will help but if it's a systemic rash it will not make the rash go away. You have me concerned about giving Enbrel every 10 days.Thats just not how it's done and could very well be why things aren't going well right now.It should be given as half the total dose 2x a week or the whole dose 1x a week. The best advise I can give is to call the rheumy and let them know whats going on. Hugs Becki and 6 systemic Quote Link to comment Share on other sites More sharing options...
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