1. < Autoimmune Diseases

Adverse side effects from RA and biologic drugs?

Posted by chicagomichelle @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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Dec 19, 2016
In reply to @skaryna "I am very interested in biologics for RA and possible side effects. I would also like..." + (show)
@skaryna

<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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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...:-(.

REPLY
chicagomichelle | @chicagomichelle | Dec 19, 2016
In reply to @skaryna "I am very interested in biologics for RA and possible side effects. I would also like..." + (show)
@skaryna

<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>

Jump to this post

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

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Dec 20, 2016

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?

REPLY
3 replies
chicagomichelle | @chicagomichelle | Dec 20, 2016
In reply to @kanaazpereira "Hello @chicagomichelle, I'd like to add my welcome, too; thank you for sharing such an insightful..." + (show)
@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

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.

REPLY
bboxer | @bboxer | Dec 23, 2016
In reply to @kanaazpereira "Hello @chicagomichelle, I'd like to add my welcome, too; thank you for sharing such an insightful..." + (show)
@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?

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 23, 2016
In reply to @kanaazpereira "Hello @chicagomichelle, I'd like to add my welcome, too; thank you for sharing such an insightful..." + (show)
@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

Hi @bboxer, welcome to Connect. To find or start discussion about pulmonary issues and lung health, please go to the Lung Health group here: https://connect.mayoclinic.org/group/lung-conditions/

You can view all groups by clicking on DISCUSS > Groups in the navigation bar above.
For more tips on How to Get Started on Connect, see this page: https://connect.mayoclinic.org/get-started-on-connect/

Contact me if you have any questions: https://connect.mayoclinic.org/contact-a-community-moderator/

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