Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 In a message dated 8/2/01 9:55:15 PM Pacific Daylight Time, spark@... writes: << Sorry I went on and on, much too wordy! More than you needed to know. >> Sue P, don't you ever apologize for being " wordy " . LOL We all need to vent and boy it sounds like you have been through alot... How do you keep going? Will keep your boss in my thoughts and prayers. I'm glad that you are somewhat better... Are you doing well on the metho and plaquenil? Plaq is the next drug of choice for me... I am only on pred at this time, took the metho for a year and tried the Imuran, but they didn't work for me... Right now the pred seems to be doing the job along with the Biaxin. (can't swear it's the biaxin, but haven't had a flare since I've started it) Maybe just lucky I guess... LOL I am on nasal spays too... My only other problem is with the hoarsness and sometimes swallowing, but nothing like before... I'm so glad to get an update on you... Please try to post more... This is how we all learn. By you being " wordy " we have learned a whole lot... Please take care and know I'm thinking of you. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2001 Report Share Posted August 7, 2001 Dear , Thanks so much for your words of concern and encouragement, I really appreciate it. I've been on plaquinil for 7 years now. I don't know if it works or not, I've never taken it alone but always in combination with other meds like methotrexate, prednisone and arava. I wonder sometimes if I should just stop it and see what happens. No doctor is willing to try this. I'm a little bummed right now. I have been having alot of trouble with my right knee swelling and being very painful. Acouple of years ago I had surgery on my left knee and they did a biopsy and my internist felt that it showed that the cartilage destruction was do to the RP, because of lots of white blood cells present among other things. I've been going to physical therapy and she tells me I now have atrophy-shrinking of the muscles in my legs due to the prednisone. My rheumatologist told me last visit that He doubted I'd ever be able to get off prednisone. I'm so frustrated with the whole thing. You mentioned that you take Biaxin. How do you take it? Twice a day and is it 500 mgm? How long have you been on it and why did your doctor put you on it? If its for RP do you have any documentation to support using it for this wonderful disease? I'd really appreciate any information you can give me. How are you doing these days? Thanks also for remembering my doctor in your prayers and please continue to pray for him. It's been great hearing from you! Take Care and God Bless You! love Sue Park Re: Re: Sue P > In a message dated 8/2/01 9:55:15 PM Pacific Daylight Time, spark@... > writes: > > << Sorry I went on and on, much too wordy! > More than you needed to know. >> > > Sue P, don't you ever apologize for being " wordy " . LOL We all need to vent > and boy it sounds like you have been through alot... How do you keep going? > Will keep your boss in my thoughts and prayers. > > I'm glad that you are somewhat better... Are you doing well on the metho and > plaquenil? Plaq is the next drug of choice for me... I am only on pred at > this time, took the metho for a year and tried the Imuran, but they didn't > work for me... Right now the pred seems to be doing the job along with the > Biaxin. (can't swear it's the biaxin, but haven't had a flare since I've > started it) Maybe just lucky I guess... LOL > > I am on nasal spays too... My only other problem is with the hoarsness and > sometimes swallowing, but nothing like before... > > I'm so glad to get an update on you... Please try to post more... This is how > we all learn. By you being " wordy " we have learned a whole lot... > > Please take care and know I'm thinking of you. > > hugs > > > > 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 August 9, 2001 Report Share Posted August 9, 2001 Dear Sue, its Sue...was on Plaquinel for about 3 years. I do think it helped but then I got a dermatological reaction, its known for that. So had to quit. I need to find another doctor quick because mine doesn't cut it anymore...My knees are also bad and still have some skin problems. I know its very frustrating and totally insane sometimes. Be grateful for the good days...Take care of Yourself...Sue Marth Quote Link to comment Share on other sites More sharing options...
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