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Adverse side effects from RA and biologic drugs?
Have others experienced a near complete drug intolerance as a result of taking many RA drugs? After 8 years of dealing with multiple drugs, I can walk very little and now use a wheelchair when I have to go anywhere, which is seldom. Biologics blow up my knees like balloons. They never really made me any better, only worse, and I am pretty much in constant pain. I feel as if my life has been taken away from me. After being treated by the same doctor for 7 years, I finally let him go. It was one of the hardest things I have ever done and even after a year, it is still very painful to me. I finally decided I had to go to Mayo and they are still working on something that can actually help rather than hurt me. I still have other specialists to see. I wrote a story about my experience with Mayo thus far. If you would like to read it, you can send me a message and I will give you a link.
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<br><br><br><br><br>I am very interested in biologics for RA and possible side effects. I would also like to read your story about the experience with the clinic. Please send me the link. Karyn<br><br><br><br>
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1 ReactionHi Karen, you can find my story here https://medium.com/@michelledigiacomofitzgerald/mayo-clinic-americas-calcutta-bfd60d9e326#.6p8lplnoy
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3 ReactionsMichelle, thank you for sharing your experiences at Mayo Clinic Rochester and St. Mary's Hospital ER. I have PMR and SFPN but have been fortunate enough to only need prednisone for episodes of the PMR and nothing for the SFPN since it's only numbness. Your story is inspiring and will hopefully give others from out of town comfort when scheduling a visit at Mayo Clinic Rochester. I've had many trips to the St. Mary's ER with my kids, the wife, and myself. They are good at what they do and are what we like to call "Minnesota Nice". Thanks again for sharing your story and visit!
John
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1 ReactionThank you so much for saying that John! I have written many things and this just poured out of me like nothing else ever has. I could not be more grateful to MC. I felt a little bad about my hotel review, but it was true. I am actually staying there again next month as I need to be close, and I have spoken to them about my experience. They are giving me a remodeled room and I will be sure to include that in a future story. I think the worst thing about going to Mayo is coming home to substandard medical care. I saw one of my home town doctors the other day. As he walked into the room, he literally said "I don't think I can help you." I regret not simply rolling myself out of his office. He spent exactly 4 minutes with me and spent half of that typing god knows what into his computer. I asked him to drain my knees, (this was supposed to be done at Mayo last week but flights were cancelled and I could not get there) which he should be perfectly capable of. He touches one knee, through my fleece lined pants and "says "I don't think there's too much fluid in there." I stood up and made him feel behind my knee, which has a hard bulge, like a half of a grapefruit. Still, he did not think it necessary. I then grabbed my phone and actually SHOWED HIM A PICTURE of my knees, which I had taken the night before. He literally could not be bothered to roll up my pant leg and really examine my knee. He did nothing about it. It is just maddening and I will never seen him again. I am literally considering Mayo for regular medical care becasue I just can not bear to have another doctor do or say the same things. And I kind of like "Minnesota Nice" too! 🙂
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1 ReactionHi @chicagomichelle, Thanks for sharing the link to your story and welcome to Connect.
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2 ReactionsThanks Colleen, I am grateful to have found this community!
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1 ReactionI have a 33 second video I posted to facebook years ago of when I went to IBM basic school for customer engineers in Rochester in 1966. I stayed on the 5th floor of the Kahler and could see the Mayo Clinic building with the statue on the face that is now inside. I can download it from facebook but if I can find it, I will upload it to give you an idea of what it looked like back in the stone age :-).
John
Ha! Would love to see it! Actually, I was in room 513, but it wasn't facing the clinic! Guessing that bed has not been replaced since 66, but it is good to know they are working on it. I must say, that sandwich is fantastic, and I am sure I will be eating it a lot! They have pot roast too, which I must try! Ahhh, my Rochester comfort food!
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1 ReactionThis was taken in my hotel room on the 5th floor of the Kahler in 1966. I stayed there for a week until I was able to rent an apartment with 3 other IBM students going to customer engineer school. The guy taking a picture of himself in the mirror is me, complete with the old 60s nerd pocket saver. Argh...won't let me post a movie file type. It's 1.4 MB .mov file. If I get a chance, I'll see if I can extract a few frames of the movie of the Mayo Clinic and the street below...kind of interesting to see how it's changed over the years.
Awww, too bad. If you give us the title, we can search youtube