← Return to Mycophenolate mofetil with Plaquenil

Discussion
JohnWBurns (@johnwburns)

Mycophenolate mofetil with Plaquenil

Autoimmune Diseases | Last Active: May 18, 2019 | Replies (8)

Comment receiving replies
@colleenyoung

John, I love how you ask Connect community members about treatment side effects. I remember you did this a few months ago before starting Mycophenolate mofetil https://connect.mayoclinic.org/discussion/is-anyone-here-on-or-has-anyone-here-been-on-mycophenolate-for/ How has this drug been working for you. Are the benefits outweighing the side effects?

Why is your care team suggesting the addition of plaquenil? What symptoms are not being managed?

Jump to this post


Replies to "John, I love how you ask Connect community members about treatment side effects. I remember you..."

Colleen, thanks but its out of a selfish desire to avoid collisions between the ingredients in the chemical soup that I have to take. Experience tells me that its easy to get blindsided, especially if you have autoimmune stuff going on. I’ve only been on mycophenolate a few months and it takes a minimum of 6 mos to show any benefit so the jury is out. Hopefully, somebody else may derive some benefit out of this exercise since one bad interaction can literally kill you. My understanding is that the rheumatologist thinks that plaquenil is synergistic with mycophenolate and the 2 have a better chance of halting the progression of the neuropathy, and the other current and possible impacts of Sjogren’s better than mycophenolate alone. Neuropathy dominates my symptom set, with fatigue and oral dryness right up there. I suspect that it impacts other things but that’s speculative. I’ve already had autoimmune thyroid disease which is linked to it so that’s moot. Fatigue is the stickiest symptom of Sjogren’s and any knowledgeable doctor will tell you that its unresolvable. For that matter I’ve been told that all symptoms of Sjogren’s are likely unresolvable but this drug combo constitutes the old college try. I need another drug like I need bankruptcy but if the neuropathy can be rolled back, that’s a very big deal. Sorry for rambling, its early. Very much appreciate your concern.

  Request Appointment