Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 Sue, Thanks for your response. Does the colchicine only help with joint flares for you, or is that your major RP problem. I am sorry to be asking sooo many questions, but it is SO wonderful to have someone to ask them of! Thanks again -- Kathleen (Tx) New med Hi all. Went in to see the rheumy this morning as I am having a flare up. He has upped the pred to 30 mg and wants to add Colchicine. Has anybody else tried this one? He said it has far fewer side effects than the others, MTX, Imuran, or Dapsone. I just hope it works. He also wants me into the ENT again as my trachea is acting up this time :-( Also, have any of you guys ever gotten a rash/sores on your scalp? I do and it HURTS. He said it was probably some sort of a local infection and gave me some antibiotic cream for it. He said, "There's no cartilage on the top of your head!" Nudge, Nudge, Wink, Wink... Anyway, if you guys have ever had this (or anything similar) please let me know! 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 January 27, 2002 Report Share Posted January 27, 2002 Kathleen, Sorry its taken me so long to get back to you. I'm not on the computer every night and its a few days or more til I get to it. To answer your questions no joint pain isnn't my only symptom. I have had red swollen ears, swelling over my throat and a hoarse voice or even lost my voice a few times. I've lost a little of my hearing and have had some really awful headaches as well as the joint pains. Aren't you glad you asked! I'm on other meds too. I take Arava. methotrexate, plaquinel, prednisone, and some others for side effects that can occur with these meds. I do very well most of the time. Mornings are always a little rough- I'm pretty stiff and sore when I first get up. Within hours though I'm walking normal. Well, normal for me anyway! I've never taken colchecine routinely but it sure helps my joints within a few doses when I have joint flares! Maybe it does help other things too I'm not sure. It's so good to have you in the group. Ask all the questions you want and don't apologize! We all need help and have questions on and off and this group has been a God send and it seems like someone always has an answer from personal experience unfortunately. Feel free to write me anytime, after all your in a neighboring state! I live in Colorado which is pretty close to Texas. I hope I'm not confusing you with someone else, Are you from Texas? So how are you doing now? I hope your not flaring and enjoying life. Write again I'd love to here from you! Sue Park New med Hi all. Went in to see the rheumy this morning as I am having a flare up. He has upped the pred to 30 mg and wants to add Colchicine. Has anybody else tried this one? He said it has far fewer side effects than the others, MTX, Imuran, or Dapsone. I just hope it works. He also wants me into the ENT again as my trachea is acting up this time :-( Also, have any of you guys ever gotten a rash/sores on your scalp? I do and it HURTS. He said it was probably some sort of a local infection and gave me some antibiotic cream for it. He said, "There's no cartilage on the top of your head!" Nudge, Nudge, Wink, Wink... Anyway, if you guys have ever had this (or anything similar) please let me know! 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 January 30, 2002 Report Share Posted January 30, 2002 Sue, Don't worry about it! I was just glad to get your post! To answer your question, yes, I am in a constant low-grade flare right now and can't seem to kick it. My ears are bad now -- inner ear, not the outer, although they do "flash" on me now and then. That's almost worsre than constant pain, because I never know what to expect -- how long or when they will tune up. I am at 30 mg of pred, about to go to 40 to try and get it under control. The colchicine doesn't seem to be helping, but he said to give it time. There has been talk of MTX... And, yes, I am the one in Texas -- just north of Dallas. We are finally seeing winter again. :-) I was born at the Air Force Academy in Colorado Springs and spent 4 years there from 5 grade through 9th grade. Where in Colorado are you? My grandparents and some family still live there and we make it up there usually once a year. So beautiful... Again, thanks for the response and type to you soon-- Kathleen (Tx) New med Hi all. Went in to see the rheumy this morning as I am having a flare up. He has upped the pred to 30 mg and wants to add Colchicine. Has anybody else tried this one? He said it has far fewer side effects than the others, MTX, Imuran, or Dapsone. I just hope it works. He also wants me into the ENT again as my trachea is acting up this time :-( Also, have any of you guys ever gotten a rash/sores on your scalp? I do and it HURTS. He said it was probably some sort of a local infection and gave me some antibiotic cream for it. He said, "There's no cartilage on the top of your head!" Nudge, Nudge, Wink, Wink... Anyway, if you guys have ever had this (or anything similar) please let me know! 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 February 11, 2002 Report Share Posted February 11, 2002 Dear Kathleen, It was so good to hear from you again! Sorry your still flaring. I know what you mean about the flash thing too. It comes and goes and makes you wonder about your sanity sometimes. My ears have done that to me too. The only good thing about it is that it does pass away for a while. I tell myself when it's happening that it will pass soon, and it does thank God. I'm on methotrexate and have been for quite a while. It has been a God send for my joints. I take it by injection and have alot less side effects than taking it orally. I live in Longmont Colorado very close to the little town of Niwot. I love it here and don't miss New York where I grew up. I do miss my family though. You might try to rest as much as possible. I found that when I keep pushing the flare doesn't go away and alot of times becomes worse. I had always been at a non-stop run before I got this wonderful disease! It's hard for me to sit still but I have learned that I have to if I want to get back on my feet sooner than later. I know how hard it is to sleep on a high dose of prednisone, as well as sit still with it. I trick myself by renting movies etc. to distract me. Next time you are coming to Colorado let me know and maybe we can meet someplace. Hope things are getting better for you as I write this. Let me know I care. Sue Park New med Hi all. Went in to see the rheumy this morning as I am having a flare up. He has upped the pred to 30 mg and wants to add Colchicine. Has anybody else tried this one? He said it has far fewer side effects than the others, MTX, Imuran, or Dapsone. I just hope it works. He also wants me into the ENT again as my trachea is acting up this time :-( Also, have any of you guys ever gotten a rash/sores on your scalp? I do and it HURTS. He said it was probably some sort of a local infection and gave me some antibiotic cream for it. He said, "There's no cartilage on the top of your head!" Nudge, Nudge, Wink, Wink... Anyway, if you guys have ever had this (or anything similar) please let me know! 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...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.