Guest guest Posted February 22, 2002 Report Share Posted February 22, 2002 i'm very interesting with your question 3of my children are afflicted by RP Marei pia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2002 Report Share Posted March 28, 2002 In a message dated 3/28/02 7:09:28 PM Pacific Standard Time, kath1@... writes: << However, feeling like I am going to choke and that my nose might explode are keeping me awake anyway!!!! Anybody have the same problems? >> Kathleen, that doesn't sound normal. I don't take Dapsone so I don't know. I know I take my pred in the morning and Plaquenil at bedtime. I would check with your dr and see what to do. Please check with someone. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2002 Report Share Posted March 29, 2002 Hi Kathleen, Did your Doc prescribe an Nsaid? I take 600mg. of Ibuprophen at lunch and again at dinner to help with the flares. Sandy Hi, I was wondering if anyone has had the same experience/trouble that I am going through right now... I take my pred and dapsone in the morning and my headache, nose pain, and throat pain get so much better! But by about 3 or 4 in the afternoon, it all starts in again to last until the next dose of pred/dapsone. Does this mean that I am not taking enough or should be splitting it up? I have read that pred should be taken in the morning as that is when cortisone levels are normally highest and that taking it in the evening could keep me from sleeping. However, feeling like I am going to choke and that my nose might explode are keeping me awake anyway!!!! Anybody have the same problems? Kathleen (Tx)DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 Thanks . Sandy<< Has anyone had a biopsy done of their Temporal Artery? My Rheumy is scheduling one for me and I don't know what to expect. I am losing the vision in my right eye and he wants to rule out Temporal Arteritis. Thanks, Sandy >>Sandy, I believe Carmella did. Why don't you email her and ask. She would love to hear from you. hugsDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 Squeek, it sounds like and I had the same test. I have to mine daily, it measures the output of my lungs and if it falls below a certain level I have to see my md. The only times I have problems is in the spring when it's wet and the molds develop, they are my trigger. Use my medicine - no problems! I am on Flovent and Seravent, I believe they are both steroids. But they work...and that's really all that matters. Right? Love, Judy Question Hi,I have a question for everyone who has had pulmonaryfunction testing. What kind? What did they do? Iasked my PCP for a test yesterday and what I gotcertainly wasn't what I had read about, but maybe itwas adequate.....you tell me.There was no big machine, no nose clip, no variedbreathing exercises....all the stuff I had read aboutin an online pulmonary center. The technician held alittle box in her hand, about the size of a gameboy. She attached a wire from the box to a little breathingtube. I had to inhale, then blow as forcefully as Icould into the tube three times. That was it. I'mhappy to say this test was normal....but, was it thecorrect test? The doctor said it "showed norestrictions typical of connective tissue disease." So, I am just wondering, and hoping for the collectivewisdom and experience of the group.Thanks, squeek=====__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 Hi Everyone, I was just wondering about side effects of having CT scans. When my partner was in hospital he was having to have them so reguarly that in a space of 7 months he had over 25 (to put in drains check fluid pouches) we were told that he had to have them. But now 18 months on his teeth are starting to crumble, hair loss and we were just wondering if this could have anything to do with the scans or does it go hand in hand with the Pancreatitis. I hope everyone has a good and christmas. Take care Vicky (UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2003 Report Share Posted December 23, 2003 --- The symptoms you describe sound as though they could also be malnutrtion related just a thought. Atwell LPN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Jen, Hi. You're not losing it. If you're in pain and sick, something is wrong. Sometimes it takes them a while to find it. Just keep being persistant. Don't give up no matter what. I hope you are feeling better soon. Rhonda Quote Link to comment Share on other sites More sharing options...
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