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A-G
Hi everyone! I started using Arava about a month ago with MTX and this is the first week that I can honestly say, I think it's helping. They reduced my MTX from 25mg to 20mg and started the Arava at 10mg. I went througha rough couple of weeks, I had to go back on Prednizone to help get me through the rough spots. I go back to Stanford week after next, I'll let you know how it goes. They say that I am the only PSA patient on this formula of medications, maybe someone else can shed some light on how they're doing, if they are on the same combination. I'm also taking 400mg of Celebrex and much more. Oh well. I really appreciate this list. My husband insisted I join and he was right. I really need the support. As a Christian, I'm struggling with spiritual issues regarding my condition and why I'm not getting better. My pastor's wife calls me Job, but I'm no Job. I complain and feel sorry for myself often. I find that no one really understands the pain and the depression is terrible. I've always been a doer, an overacheiver to most, but not anymore. I can hardly get my kids to baseball practice and games. I can't tell you hard my job has become. I'm a preschool director and I'm having to consider giving it up. I guess that's one of my problems, I feel like I've given so much up and it still hasn't helped. Enough of this! I am grateful I am able to type on this computer and have all of you to keep me posted on this wretched disease.
Hope you all feel better this week. Amy
ANGERA
I am new here too! I was diagnosed with PS 25 years ago and PA, RA, Osteo and borderline lupus 10 years ago. Bummer! Question for you. My left index finger was the first to be affected also. Do you know if this is indicative to this disease? Thought it was quite interesting we both started out the same way. I am also on Methotrexate. On and off I should say. I develop mouth sores, infections and high liver counts. It seems when I can get up to 3 a week one of the above happens, then I have to cut back, skin lesions worsen and I have a hard time navigating. I also am on Prednisone only I get it by injection once a month and if I can't make it through the month I'll take it orally until I see my Rheu. again. I am also on an NSAID, Dolobid. I have been on it for about 2 years now. I have been on quite a few over the last 10 years but seems that I take them for about 1 year and they don't help anymore. This one so far is working (knock on wood).
AUNT-BLABBY
Hi everyone,
I have been reading al these letters with great interest. I am female 50 yrs old and have had P since the age of 20 and PA since 27, but was not treated because I was told there were no new treatments available. My Mom had P but we do not know if she had PA or not because she took MTX back in the 60`s when it was still experimental. Those were the days when you had to have a liver biopsy every 6 months. Even if your blood work was ok. I saw what my Mom went thru during the early years and said Not for me. I started being treated for P when I was 32 I guess and no one could figure out why I was in so much pain-some days I could no walk across the room the pain would be so bad. At first my Primary care guy thought I had Rheumatic Fever but my blood work kept saying no. So he finally said it was "nerves" and put me on tranquilizers. I could go on forever about what the Docs thought it was and wasn`t. Just 2 yrs ago I found this wonderful Rheumy who is very interested in P and PA snd right now he has me on injectable MTX and now Enbrel. I have been injecting myself with MTX for over a year now and still hate it but it is better than the pills which made me so sick. A friend who is a RN taught me how to do it and we went step by step. Now I inject the Enbrel twice a week. The Rheumy traced all my aches and pains of the possible Rheumatic fever days to Fibromyalgia and Post Polio Syndrome- actually my Ortho guy did the figureing out of the PPS. I am really interested in hearing from anyone who is taking MTX and Enbrel, The MTX alone did nothing for the PA but is doing wonders for the P. I have a lot of trouble with the Achillies Tendons where they insert into the bone and with the ligament on the bottom of my foot and in my ankles it is gettin to the point where I cannot walk any distance because of the pain. I am gettin very depressed over this because I love to go for long walks. Well take care everyone and have a good rest of the day. aunt-blabby
DENISE Hi All,
I am new to the group and wanted to introduce myself to everyone. My name is Denise Ohr and I am 44 years old and from southwestern Pennsylvania. I am married and have 2 sons who are both in the Air Force. I was diagnosed with PA in January of this year. Had been feeling pretty lousy for a few years but I am sure you all know how long it takes to find someone who wil finally listen and take your complaints seriously. Actually a bad posterior tibial tendon brought things to a head. The foot surgeon is the one who said to get to a rheumatologist because something destroyed this tendon. Had a major procedure done on that foot in December. Just recently had a biopsy of the sternoclavicular joint due to a protrusion there. It was inflammation, fibrosis, etc. The surgeon had to hammer and chisel a specimen out. I would be interested to know if anyone else has a problem in that area. As far as the psoriasis goes, I only have 2 small patches on my head, which have been there for about 12 years and a patch on my thigh which erupted in March of '98 after a severe drug reaction to sporanox....which is for nail fugus. Now they believe "the fungus" is psoriasis of the nails. Having major problems with toenails and 2 fingernails. Can anyone suggest any help for the nails? I have tried MTX with no help and am currently taking Arava 20 mg. daily with prednsone 7.5 daily. Still no help but have only been taking it for 3 weeks. Looking forward to hearing from you and sharing info and suppOrt. This is one frustrating disease and I am just beginning!
Take care,
Denise