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Hello, My name is Jeanne and I've recently been tentatively diagnosed with Spondyloarthropahy or RA---It all began at the end of December with a red, swollen third toe on my left foot. Within a few weeks it had spread to my right thumb, right shoulder and left knee. The docs had initially treated it with prednisone and NSAID's...no luck, it kept going. So quick, so bad that my left knee cap is torn away from the tendons. I was an active, exercising type 46 year old otherwise healthy lady. This has been absolutely devastating. I now have a rheumy I trust and it working with me. I just took my second dose (50 mg) of Enbrel and am on MTX (5), Prednisone 10 mg. daily, Azulfidine - 500 mg. 2X a day, Dolobid - 500 mg. 2X a day, Diovan - 160 mg. 1x a day (this was the ONLY drug I was on prior to this tornado that hit me-as I've had HBP for a few years), Prilosec - 20 mg. X1 day, Calcium 500mgX3 a day, Xanax (to ease the stress of the diagnosis:)....5mgX2 day, Folic Acid - 800 mcg daily...and that's all folks. I feel like a walking medicine cabinet! The doc said that if the Enbrel continues to work well (and it is so far) he will wean me off the MTX, Azul and Dolobid. He is leaning towards the Spondo diagnosis because this all started in a digit (my toe) and I have a positive HLA B27 test. I've also, for several years now, had a high C-Reactive Protein. I sometimes feel like I have "hot" spots popping up on my body -- various locations and my face and neck get terribly flushed. Has anyone else had this type of odd reaction--my doc and the Enbrel reps are puzzled. Any suggestions or support would be greatly appreciated. Is there life after this diagnosis? With kind regards, Jeanne
Jeanne, I am so sorry to hear that your disease has spread so rapidly. I hope the medications continue to improve your symptoms. Each of us here has had different experiences, many of us have gone through misdiagnoses, many more have been diagnosed with a multitude of diseases and disorders combined. One thing is certain, you dont have to go through this alone. You will find alot of support here. I know the meds can have some unpleasant (to say the least) side effects and that sucks. But hopefully your body will adjust soon and better days are just around the bend.
Welcome to the board, and hang in there girl...
Thanks so much for your kind note. I really do appreciate the support. I'll be in touch. With kind regards, Jeanne Hi Jeanne and welcome. I'm new too and going through much of the same thing. It can take a long time to get diagnosed because a lot of the autoimmune diseases overlap. It took me 8 years of working with a rheumatologist to finally figure out what I had (RA,OA, Sjogren's and fibromyalgia). It sounds like you found a good rheumatologist. The medications are tricky and I think you just have to trust your doctor to come up with the right combination. Many of the medications work for a variety of diseases so although it's frustrating, it may not be important for an exact diagnosis. It's more significant if the meds are arresting the disease process and it sounds as if it is. Hope you feel better soon. Linda Sweetie she was talking about this haishibushuohao person. Not you. For some reason this person is posting on every thread on the board....and I'm still yet to figure out why. Honestly I can barely make heads or tails of the comments the English is so bad. It's obviously SPAM...and we've asked the person to leave but he/she seems to be entertained by annoying us. Welcome to our group Chris....and jeannboo. We really have a great group of friends here....and every once in a while we'll have random people trying to post links to their websites where they are pushing some sort of mystery product or service. We don't take very kindly to it....especailly once several people ask them to stop and they refuse. Again; Welcome to our group. Your welcome. I didn't want you to think VT was talking about you...she would never be so rude to one of our friends. None of us would. We're all very friendly and encourage new folks to join us in what we consider to be a really close knit group. We do have a time with these people that post hoping to get action at their websites. If you hear of one of us suddenly being rude to someone like this person just realize we've been here long enough to spot the "Trolls" real quick. I'm just glad I saw your post quick enough to clear things up....VT wouldn't have wanted to hurt your feelings at all. All of you guys are great! This is the first time I've ever participated on a message board, and am glad to hear I'm pretty much right in line with things, perhaps with the exception of the fast acting version (three months) and you feel like you've been "rheumatoided" out of your mind version:) I tell you I have to laugh or I would be nuts about this by now! Thanks so very much, and I will keep you posted. Blessings, Jeanne
i got your email but when i tried to respond it was sent back in error. something to do with the website i guess. thanks so much for email. it sure seems we have alot in common. i too have a very supportive husband and family. i was a very active 50 yr old who worked a full time job and also has a 14 yr.old grand-daughter who lives with my husband and i. i had to go on permanent disability in jan. of 03. lets keep in contact as i feel we could really learn alot from each other. take care and i hope this is a good day for you. chris h.do you mind explain a little more how is it look like
Jeanne, welcome. Please ignore the user above this post as you may have gathered, this person is making a pest out of themselves.
Anyway, your regime sounds right in line with what a good Rheumatologist would do. I hope it continues to help you and that you follow his/her directions. I don't have 'hot spots' but do have thins really strange sensation that will 'crawl quickly' over different parts of my body sorta like a tingle/chill..type of thing. Wierd eh? Anyway, I would be sure to discuss the 'hot spots' with your physician and see what they think.
Keep us posted on how you are doing!
VTmtngirl,
i think i owe you an apology, no i know i do. i assumed you were talking about me as the pest since i was having problems not realizing the post under mine. i just found this message board yesterday and i really enjoy being a part of it. i get alot back from reading everyone's stories and how they cope. i hope you accept this apology. take care, chris h
thanks for setting me straight on this. i seemed to jump to conclusions and make somewhat of a fool of myself. after i got reading reply's from this guy i figured out who you meant. he is very confusing and never gets to any issues that could help the group. i look forward to everyone's feedback and thanks again.
chris h.
Sometimes I do things to quickly and don't pay attention. Please forgive me.
lovie and vt,
thanks so much for your kind notes. you guys are super.have a great night and talk to you soon. chris h
the most important is the result.
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