Guest guest Posted January 15, 2002 Report Share Posted January 15, 2002 Rita, Thanks so very much for the reply. Wow, it sounds like the combination of the pred and colchicine really worked for you. I sure hope the same is true for me... I have also lost hair along the hairline. It's so funny, but where the inflammation is on the top of my head, the hair *has* been turning gray... I am sorry that you have had problems with RP, but am glad to know that I am not alone in the symptoms that I am having. Did he say the scalp problems were caused by vasculitis? I would like to let my rheumy know if that is the case. I have read that RP is a vasculitide disease, so that would make sense... I have also had dizziness. When I was really flaring last summer, before I knew what it was, the room would be spinning when I woke in the morning. It seemed to get better as the day went on -- most of the time -- but what a way to start the day. I also ran fever and lost weight. Anyway, I could go on all day... Thanks again and please let me know what he said about the rash/inflammation... (Also did the pred and colchicine kick it?) Kathleen (Tx) Re: New med > Kathleen, > > I do not post very often, but your questions hit home. > My name is Rita and I am from Montgomery, AL. My > first flare was a year ago this past December in my > left ear, my second was two months later in my right > ear. I finally ended up with a Rhemy in Birmingham AL > who immediately put me on Pred and Colchicine. I have > not had an ear flare since. I have had the head and > scalp irritation and burning. My hair even came out > along the hair line after the flare. He disgnosed me > with vasculitis. It hasn't happened since, however > when the hair came back it was grey. Ha! The only > other strange affect RP has had on me is my > equilibrium (sp). I have had two spells where for a > couple of days the room spins. I cannot even walk > straight across the floor. I can only sleep on one > side. I'm sorry to hear about your problems. The > Colchicine along with the Pred. > --- Kathleen wrote: > > 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) > > > > > ===== > Have a great day! > > Rita > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2002 Report Share Posted January 16, 2002 Rita, Are you still seeing the doctor in Birmingham? Do you seem content with him? I am ready to switch rheumy's so I was wondering how you like him? Do they call you back if you need them? Let me know when you can. Thanks! Love, Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2002 Report Share Posted January 16, 2002 Rita, He sounds wonderful, I need to call and make me an appt. I have an appt. with my rheumy here next week I think, then I'm getting copies of all the last things he has done for me. I think I will give your doctor a call. I just hate driving it, but heck, you've got to do what you have to do, right? Take care, Love Lu Lu, Yes I am. I would not go to anyone else. He is the head of Rheumy at Brookwood Hospital. He attends seminars on RP and his former roommate is speaking across the country on RP (doctor at Mayo Clinic). My doctor's name is Dr. McLain. If you can you need to see him. There is also a website directly into his office whenever you have questions or any other question. I will get this for you. Great to hear from you. How are you doing? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2002 Report Share Posted January 16, 2002 Kathleen, The colchicine is not for the vasculitis. It was for joint redness and pain. He also told me that the dizziness problem (equilibrium) presents itself in approx. 30% of RP cases. He did an MRI (head) and found nothing abnormal. The occasional headaches, leg cramps, muscle aches are becoming a way of life. I can now determine when a flare is coming, in whatever form it may take, increase my pred. and decrease its severity. I wish you the best of health. Get back with me sometime. Rita --- Kathleen wrote: > Rita, > > Thanks so very much for the reply. Wow, it sounds > like the combination of > the pred and colchicine really worked for you. I > sure hope the same is true > for me... I have also lost hair along the hairline. > It's so funny, but > where the inflammation is on the top of my head, the > hair *has* been turning > gray... > > I am sorry that you have had problems with RP, but > am glad to know that I am > not alone in the symptoms that I am having. Did he > say the scalp problems > were caused by vasculitis? I would like to let my > rheumy know if that is > the case. I have read that RP is a vasculitide > disease, so that would make > sense... > > I have also had dizziness. When I was really > flaring last summer, before I > knew what it was, the room would be spinning when I > woke in the morning. It > seemed to get better as the day went on -- most of > the time -- but what a > way to start the day. I also ran fever and lost > weight. Anyway, I could go > on all day... Thanks again and please let me know > what he said about the > rash/inflammation... (Also did the pred and > colchicine kick it?) > > Kathleen (Tx) > > Re: New med > > > > Kathleen, > > > > I do not post very often, but your questions hit > home. > > My name is Rita and I am from Montgomery, AL. My > > first flare was a year ago this past December in > my > > left ear, my second was two months later in my > right > > ear. I finally ended up with a Rhemy in > Birmingham AL > > who immediately put me on Pred and Colchicine. I > have > > not had an ear flare since. I have had the head > and > > scalp irritation and burning. My hair even came > out > > along the hair line after the flare. He disgnosed > me > > with vasculitis. It hasn't happened since, however > > when the hair came back it was grey. Ha! The only > > other strange affect RP has had on me is my > > equilibrium (sp). I have had two spells where for > a > > couple of days the room spins. I cannot even walk > > straight across the floor. I can only sleep on > one > > side. I'm sorry to hear about your problems. The > > Colchicine along with the Pred. > > --- Kathleen wrote: > > > 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) > > > > > > > > > ===== > > Have a great day! > > > > Rita > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2002 Report Share Posted January 16, 2002 Lu, Yes I am. I would not go to anyone else. He is the head of Rheumy at Brookwood Hospital. He attends seminars on RP and his former roommate is speaking across the country on RP (doctor at Mayo Clinic). My doctor's name is Dr. McLain. If you can you need to see him. There is also a website directly into his office whenever you have questions or any other question. I will get this for you. Great to hear from you. How are you doing? Rita --- Lu1953@... wrote: > Rita, > Are you still seeing the doctor in Birmingham? Do > you seem content with him? > I am ready to switch rheumy's so I was wondering how > you like him? Do they > call you back if you need them? Let me know when you > can. Thanks! > Love, > Lu > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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