Switching Medications
What has been your experience with switching RA medications? Do family members and support givers understand what that entails and how to best help you?
Lynn Marie shared a great article with tips on how to educate support givers on how to help you (https://rheumatoidarthritis.net/?p=39836).
Curious for people's experiences.
Methotrexate worked for over 1 year and then I got sick (flu like) every week when I took it. Switched to Enbrel for 9 months with god luck and now new Dr. wants to change again to Rituximab. Do they work on commission or something??? B.B.
, huh. Is Enbrel still working well for you? Why does the new doctor want to change things up?
Best, Erin, RheumatoidArthritis.net Team Member.
I have been on every single biological on the market except Rutixan. My experience is I build antibodies ultra fast. JAKs were filled with horrible side effects. Do not go zone for me! I don’t have any family close by and to be frank they are uneducated and believe I caused my RA. Still even with graduate level degrees they blame me for my demise. I just don’t care to keep them informed. Even my nephew at 20, diagnosed with severe colitis -he and his family believe it’s just a phase. Denial . Change is change and nothing more.
I'm sorry your family doesn't understand but I wanted to say I also build antibodies super fast so I cycle through drugs at a rate others don't understand! , oh, goodness! I can't believe your family thinks your RA is in any way your fault! All the data shows that is NOT the case. I am sorry they are not more empathetic and open to truly learning about RA (or your nephew's colitis).
And I am sorry that your body reacts so strongly to conventional treatments. I know that must just be another frustrating thing to deal with, on top of everything else.
Thank you for sharing.
Best, Erin, RheumatoidArthritis.net Team Member.
To some extent, but they all seem to believe that the "right" medicine will completely banish the pain, stiffness and fatigue. I know it's not going to happen and I've made my peace with that, but poeple who love me often insist on holding out hope.
, I am liking your comment because of the wisdom you shared (not because your sweet Calli has passed). Balancing hope and realism IS hard, especially when dealing with the unrealistic expectations of others.
Best, Erin, RheumatoidArthritis.net Team Member.
Hi
. I can tell you that family and friends can eventually learn the balance with hope and the reality. I happen to be the husband of someone with RA. My wife, Kelly Mack (a contributor here), was diagnosed at age two, almost 45 years ago. I'll readily acknowledge our situation is a little different because Kelly had significant damage at the time we met. That said, I knew little about RA, but I learned about the systemic nature of autoimmune conditions. I think what changes is the nature of the hope - it changes to the hope of the best, happiest, most fulfilling possible life. Note: that hope can still include treatment (Kelly and another contributor here, Daniel, found treatments to control the inflammation after lifetimes with RA), but knowing it will not undo what has been done. I often say that Kelly gets me to do things I wouldn't do otherwise and that hope of maintaining that desire for new things to come is now the hope I will always have for her. Wishing you and all those who support you the best. Richard (RheumatoidArthritis.net Team)
My family think that if I’m on a treatment medication then I should be pain free and not have any symptoms or problems. They think it means that I’m essentially cured while I take the medication. And when I have pain I get asked if I missed a dose.
, I am sorry your family doesn't understand the intricacies of RA treatments. If only they all worked like a magic pill and all pain and inflammation would disappear when you took them! Wouldn't that be nice!
Best, Erin, RheumatoidArthritis.net Team Member.
