Guest guest Posted June 17, 2012 Report Share Posted June 17, 2012 My flares were coming every 2 weeks. I have now been on pred two weeks this coming Tuesday and I can feel a very slight flare happening. Not sure if it will remain really mild or not on the pred. The next couple of days will tell. The uncomfortable throat issue has never really gone away but knees have been much better. I can go for walks now. I have had a few very light headed moments this weekend, like I do when I have a flare, could be the anemia? I also feel a slight pleural effusion but very slight right now. Is this normal when you are taking prednisone? Thanks, a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2012 Report Share Posted June 18, 2012 Good day a, I’m glad your knees are a bit better so that you’re able to walk a bit. We can’t know why you’re getting light headed but it is possible for the anemia to be a cause. Try and have a chair around the places you stand and move slowly when you get up. Something that may help is to write down your symptoms each day and times of day with fever spikes. This can be a most helpful tool for you to learn your disease and for your doctor to see what patterns and symptoms you are having with each treatment plan. Taking Prednisone can relieve so much of the symptoms but does not stop the disease so yes, still having any symptoms can be normal but always ask and keep your doctor informed so he/she can decide the best treatment at each stage. Keep your spirits up if you can and thank you for sharing with us. Smiles and hugs, From: celson001@... My flares were coming every 2 weeks. I have now been on pred two weeks this coming Tuesday and I can feel a very slight flare happening. The uncomfortable throat issue has never really gone away but knees have been much better. I can go for walks now. I have had a few very light headed moments this weekend, like I do when I have a flare, could be the anemia? I also feel a slight pleural effusion but very slight right now. Is this normal when you are taking prednisone? Thanks, a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2012 Report Share Posted June 19, 2012 Thanks I do need to keep a record of my symptoms. a Sent: Monday, June 18, 2012 12:48 PM To: Stillsdisease Subject: Re: Question Good day a, I’m glad your knees are a bit better so that you’re able to walk a bit. We can’t know why you’re getting light headed but it is possible for the anemia to be a cause. Try and have a chair around the places you stand and move slowly when you get up. Something that may help is to write down your symptoms each day and times of day with fever spikes. This can be a most helpful tool for you to learn your disease and for your doctor to see what patterns and symptoms you are having with each treatment plan. Taking Prednisone can relieve so much of the symptoms but does not stop the disease so yes, still having any symptoms can be normal but always ask and keep your doctor informed so he/she can decide the best treatment at each stage. Keep your spirits up if you can and thank you for sharing with us. Smiles and hugs, From: celson001@... My flares were coming every 2 weeks. I have now been on pred two weeks this coming Tuesday and I can feel a very slight flare happening. The uncomfortable throat issue has never really gone away but knees have been much better. I can go for walks now. I have had a few very light headed moments this weekend, like I do when I have a flare, could be the anemia? I also feel a slight pleural effusion but very slight right now. Is this normal when you are taking prednisone? Thanks, a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2012 Report Share Posted June 20, 2012 Hey there Holly, Great to hear you feeling upbeat about the Pain Clinic - here in the UK, they have some good tricks up their sleeves. I was interested in the perspiration issue you raised. Seems to be with me that this can be a little warning signal - a " hang on, slow down " as it most often precipitates a fever. I guess when you look at perspiration logically, it is the body's " normal " reaction or fighting mechanism to combat inflammation / infection...we people are just a bit overactive on that front, eh?! I'm getting better at spotting the apparently innocuous but significant warning signs - wonder if this could be one of yours? You will let us know how you get on at the Clinic? Best wishes, Francesca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2012 Report Share Posted June 20, 2012 Hey there Holly, Great to hear you feeling upbeat about the Pain Clinic - here in the UK, they have some good tricks up their sleeves. I was interested in the perspiration issue you raised. Seems to be with me that this can be a little warning signal - a " hang on, slow down " as it most often precipitates a fever. I guess when you look at perspiration logically, it is the body's " normal " reaction or fighting mechanism to combat inflammation / infection...we people are just a bit overactive on that front, eh?! I'm getting better at spotting the apparently innocuous but significant warning signs - wonder if this could be one of yours? You will let us know how you get on at the Clinic? Best wishes, Francesca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2012 Report Share Posted June 20, 2012 Hi a, I hope the pred. is starting to act as a leveller for you by now. How are you getting on? I think it's really positive that you are able to identify the signs of a flare - so hard to just STOP, I know, but hopefully you caught it. The throat, the throat...oh, the bain of my life. We have an over the counter throat tablet here in the UK called Tyrocet - it has a mild anesthetic in it. I wonder if you have anything similar? It definitely helps, plus a lot of fluids. Right behind on what she says re the lightheadedness. You'll keep an eye on that, right? Best wishes, Francesca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2012 Report Share Posted June 20, 2012 Amazing how that throat thing is so 'there'. I have also been feeling the threat of blackouts again today. I already have panic/anxiety issues so this does not help and scares me. Where am I going to drop? I was thinking the other day about the head sweats. I get them early evening and wonder if a fever was/is involved though doesn't quite feel like it. I use different throat things and some help a bit. It is more of a sign that I have this disease sometimes. I really try to keep busy with my 'stuff' I do to try and keep my mind off of the fact I have a very big issue. Hope it helps. Really hot here today and the dogs would like to go for a swim! Best wishes, a From: Francesca Fair Sent: Wednesday, June 20, 2012 5:29 AM To: Stills Disease Subject: RE: Question Hi a, I hope the pred. is starting to act as a leveller for you by now. How are you getting on? I think it's really positive that you are able to identify the signs of a flare - so hard to just STOP, I know, but hopefully you caught it. The throat, the throat...oh, the bain of my life. We have an over the counter throat tablet here in the UK called Tyrocet - it has a mild anesthetic in it. I wonder if you have anything similar? It definitely helps, plus a lot of fluids. Right behind on what she says re the lightheadedness. You'll keep an eye on that, right? Best wishes, Francesca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2012 Report Share Posted June 20, 2012 Amazing how that throat thing is so 'there'. I have also been feeling the threat of blackouts again today. I already have panic/anxiety issues so this does not help and scares me. Where am I going to drop? I was thinking the other day about the head sweats. I get them early evening and wonder if a fever was/is involved though doesn't quite feel like it. I use different throat things and some help a bit. It is more of a sign that I have this disease sometimes. I really try to keep busy with my 'stuff' I do to try and keep my mind off of the fact I have a very big issue. Hope it helps. Really hot here today and the dogs would like to go for a swim! Best wishes, a From: Francesca Fair Sent: Wednesday, June 20, 2012 5:29 AM To: Stills Disease Subject: RE: Question Hi a, I hope the pred. is starting to act as a leveller for you by now. How are you getting on? I think it's really positive that you are able to identify the signs of a flare - so hard to just STOP, I know, but hopefully you caught it. The throat, the throat...oh, the bain of my life. We have an over the counter throat tablet here in the UK called Tyrocet - it has a mild anesthetic in it. I wonder if you have anything similar? It definitely helps, plus a lot of fluids. Right behind on what she says re the lightheadedness. You'll keep an eye on that, right? Best wishes, Francesca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2012 Report Share Posted August 17, 2012 Hi Kirk, Â Speaking from experience with my own daugther and virusis. She had Mono at 8 years old. She also had positive for the Epstein-Bar virus. An menengitis has been mentioned here several times, and I do see a correlation for myself with other auto immune disorders, which seem to be linked to a time when I probably had spinal menegitis, however the doctor called it an unknown virus, but I had ALL the classic sypmtoms, and feel I had it at age 18. Â My personal opinion is that the immune system is compromised and that's what allows even the Still's or other auto immune diseases come to fruition in our system. I hear they lie dormant, and stress or other trauma can bring them out. Â For MJ, when you asked about eating a healthy diet, and mentioned I think pagen or one of the others, I do also believe it is a matter of giving the body a defense against the illness by keeping it as healthy as it can be with good food and nutrients to do it's battle. Keeping free-radicals low which damage cells is important too I think, as they compromise the energy our cells receive to also fight sickness. Supposidly taking vitamins like Omega 3 oils, CoQ10, Vit. E, Vit. C, and I'm leaving out others for sure, work on the immune system to rid the body of the yucky attacking cells. This is over simplifiying things to say it like this. But, I aint no doctor, and don't claim to have all the answers, but will definatly keep anything in mind that may be of help to give relief to myself and to others who fight daily with the ugly illness that it is. Â Hope you all hang in there and keep up the fight we're in this together! Â Sending healing thougths your way, >To: stillsdisease <Stillsdisease > >Sent: Friday, August 17, 2012 9:52 PM >Subject: Question > > >Â >I have contacted a man who was with me in Boot Camp who is now a Colonel >and has connections to the V.A. , but he would like to know what viruses >are connected to Stills. I want to say Rubella, but I'm not certain on >that. Any and all assistance on this is appreciated as I've been fighting >for these " missing " records for close to 10 ******* YEARS!!!! >Kirk > >-- >Everything in life sucks except things that should! > > Quote Link to comment Share on other sites More sharing options...
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