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chicagomichelle
@chicagomichelle

Posts: 41
Joined: Dec 15, 2016

Adverse side effects from RA and biologic drugs?

Posted by @chicagomichelle, Dec 18, 2016

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.

REPLY

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

Liked by chicagomichelle

@skaryna

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

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Hi Karen, you can find my story here https://medium.com/@michelledigiacomofitzgerald/mayo-clinic-americas-calcutta-bfd60d9e326#.6p8lplnoy

@skaryna

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

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Michelle, 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

Liked by chicagomichelle

@skaryna

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

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Thank 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! 🙂

@skaryna

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

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Hi @chicagomichelle, Thanks for sharing the link to your story and welcome to Connect.

@skaryna

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

Jump to this post

Thanks Colleen, I am grateful to have found this community!

@skaryna

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

Jump to this post

I 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

@skaryna

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

Jump to this post

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!

@skaryna

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

Jump to this post

This 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.

@skaryna

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

Jump to this post

Awww, too bad. If you give us the title, we can search youtube

@skaryna

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

Jump to this post

I was able to load the movie into Google docs. Here is the link – http://bit.ly/2hkIxzH. It’s really short video. You may have to download it to view, not sure. I don’t have a youtube account…:-(.

Liked by crhp194

@skaryna

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

Jump to this post

That’s fantastic John! I love the music and Man and Freedom looks much better inside

Hello @chicagomichelle,

I’d like to add my welcome, too; thank you for sharing such an insightful movie about your experiences. I’m sorry that you are going through such pain, but glad that you are being an advocate for your own health.

Although prescribed for different symptoms, a few Connect members have discussed biologic drugs: @amy75, @jay_baruch, @thankful, @lorrainechavez, @sidepockets, @dancingwind, do you have any information or insight about biologic drugs for Michelle?

I would also encourage you to read this study, conducted by the Rheumatology division of Mayo Clinic, regarding TNF inhibitors:
http://bit.ly/2gXIhFR

@chicagomichelle, are you experiencing symptoms of drug intolerance? What have the doctors suggested?

@kanaazpereira

Hello @chicagomichelle,

I’d like to add my welcome, too; thank you for sharing such an insightful movie about your experiences. I’m sorry that you are going through such pain, but glad that you are being an advocate for your own health.

Although prescribed for different symptoms, a few Connect members have discussed biologic drugs: @amy75, @jay_baruch, @thankful, @lorrainechavez, @sidepockets, @dancingwind, do you have any information or insight about biologic drugs for Michelle?

I would also encourage you to read this study, conducted by the Rheumatology division of Mayo Clinic, regarding TNF inhibitors:
http://bit.ly/2gXIhFR

@chicagomichelle, are you experiencing symptoms of drug intolerance? What have the doctors suggested?

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Ugh! I just wrote a lengthy response which just went POOF and disappeared! Maybe it was just too long. In short, I do believe I have become drug intolerant due to the many that have been prescribed to me. I have been on all the standard pills as well as Enbrel, Orencia, Humira, Actemra and Xeljanz. I was misdiagnosed with RA and fibro in 2008 for the first 2.5 years of being sick, when in reality, I had torn both rotator cuffs in a beach accident (thrown to the shore by high waves) but never realized I was injured so badly (who gets majorly injured on a beach?) until 2.5 years later when I was on a patient web site and someone asked if I had ever hurt my shoulders. I’ve no doubt RA has set in after all these years. My relationship with my then doctor was complicated and became very personal, so when I should have let him go, I did not. That would finally happen in December of last year when he refused to treat my mouth sores and pain (“it will go away”) and I realized then it was from the sjogrens he told me I had in 2010. He said it was “no big deal” and that I just needed disease modifying drugs. So much for DMD’s. I would finally let this doctor go last December and have been flailing most of the year, desperately trying to get help, to no avail. Finally, I just went to Mayo as I could not stand it anymore. The biggest issue in the last few years taking DMD’s was my knees, which would blow up like balloons. No one would treat this or even drain them, in spite of me begging them to. I would also be hospitalized once or twice a year as I would become practically paralyzed and could not lift my legs or arms. Mayo drained my knees and had me try one more drug, Arava, which basically did the same thing. I am a mess, but I remain hopeful that MC will help me get to the bottom of this and help me find relief from the near constant pain I live with.

@kanaazpereira

Hello @chicagomichelle,

I’d like to add my welcome, too; thank you for sharing such an insightful movie about your experiences. I’m sorry that you are going through such pain, but glad that you are being an advocate for your own health.

Although prescribed for different symptoms, a few Connect members have discussed biologic drugs: @amy75, @jay_baruch, @thankful, @lorrainechavez, @sidepockets, @dancingwind, do you have any information or insight about biologic drugs for Michelle?

I would also encourage you to read this study, conducted by the Rheumatology division of Mayo Clinic, regarding TNF inhibitors:
http://bit.ly/2gXIhFR

@chicagomichelle, are you experiencing symptoms of drug intolerance? What have the doctors suggested?

Jump to this post

How do you start a new dialogue; I haVE A PULMONARY DISEASE THAT I BEING TREATED FOR @ MAYO AND WOULD LIKE TO START A DIALOGUE WITH OTHER PATIENTS WITH SAME?

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