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JohnWBurns
@johnwburns

Posts: 300
Joined: Jun 02, 2015

Mycophenolate mofetil with Plaquenil

Posted by @johnwburns, Jun 14, 2016

Is anyone on both Mycophenolate mofetil and plaquenil, for any reason? I have been on mycophenolate for a few months for neuropathy caused by Sjogren’s but they will be adding plaquenil starting tomorrow.

REPLY

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?

@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?

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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.

That’s not selfish @johnwburns! That’s getting informed.
I should come clean that I follow your quest closely as my mother suffers from many of the symptoms you describe minus the neuropathy. Your queries help us in our quest for resolutions, especially to the fatigue.

Thanks for expanding your questions and reasons for pursuing treatment with both mycophenolate mofetil and plaquenil. I’d like to bring @ccorrconro @julied838 @gonefishinmt @aimeenc @emmie @user_ch906f23e @dbdeer @buttons into this discussion. I think you’ve met most of these members and talked about either mycophenolate mofetil (CellCept) or plaquenil with them. Have any of you taken both?

Well good luck to your Mom. Sjogren’s, and presumably other autoimmune cousins are still not well understood as far as who gets what symptom constellation. It can attack the CNS and mimic MS or be as mild as annoyingly dry eyes and mouth. Lupus is known as “The Great Mimicker” but PSS seems to be approaching sharing that label. But one thing I know from reading a bunch of scientific papers is that the technicality is beyond me. At some point you just have to go with clinical judgement and experience. My comment about nothing resolving the fatigue is based on several doctor’s opinions and a lot of searching. Getting fit helps everybody so optimizing things generally is the most you can count on for now. Please tell me if I’m incorrect. I hope that I am. Hello to the folks added to the thread.

Hi @johnwburns & @colleenyoung! Thanks for adding me to the conversation @colleenyoung.

I’ve actually taken both cellcept & plaquenil & haven’t ran into too many side effects on either. I was originally put on cellcept for what my rheumatologist thought was cryofibrinogenemia & some other autoimmune disease (similar to lupus) that had yet to “reveal itself” according to my rheum. While taking the cellcept I also had positive wound biopsy results for livedoid vasculopathy.

The only real side effect I had from it was some occasional nausea. However, as with any immunosuppressive medication, I did get more frequent infections (colds & flus thanks to 2 young kids in daycare & wound infections too.) After 6-7 months on the cellcept, Coumadin, trental, & norvasc combo my bilateral foot wounds started to heal & were completely healed a few months later. A couple months after my wounds had healed, my rheumatologist decided to take me off the cellcept since I had been negative for the cryofibrinogenemia and the livedoid vasculopathy (LV) wasn’t necessarily an autoimmune disorder. However, a few weeks after stopping the cellcept I exploded with new ulcers & also started to develop pretty severe neuropathy in my legs & feet that just kept getting worse the longer I was off the cellcept. My rheumatologist was hesitant to restart the cellcept due to my open wounds & risk for infection & started me on plaquenil instead.

Now I’ve not had any side effects whatsoever on the plaquenil, but don’t think it’s done anything to help heal my wounds or prevent new ones from forming. But I have noticed the neuropathy improving lately, & as I write this, wonder if the plaquenil has had anything to do with the improvement??

Sorry for the long reply, but I hope this kind of helps to answer your question. I also hope this combo of meds will help with your neuropathy & sooner rather than later! Good-luck & keep in touch!

Aimee

@aimeenc

Hi @johnwburns & @colleenyoung! Thanks for adding me to the conversation @colleenyoung.

I’ve actually taken both cellcept & plaquenil & haven’t ran into too many side effects on either. I was originally put on cellcept for what my rheumatologist thought was cryofibrinogenemia & some other autoimmune disease (similar to lupus) that had yet to “reveal itself” according to my rheum. While taking the cellcept I also had positive wound biopsy results for livedoid vasculopathy.

The only real side effect I had from it was some occasional nausea. However, as with any immunosuppressive medication, I did get more frequent infections (colds & flus thanks to 2 young kids in daycare & wound infections too.) After 6-7 months on the cellcept, Coumadin, trental, & norvasc combo my bilateral foot wounds started to heal & were completely healed a few months later. A couple months after my wounds had healed, my rheumatologist decided to take me off the cellcept since I had been negative for the cryofibrinogenemia and the livedoid vasculopathy (LV) wasn’t necessarily an autoimmune disorder. However, a few weeks after stopping the cellcept I exploded with new ulcers & also started to develop pretty severe neuropathy in my legs & feet that just kept getting worse the longer I was off the cellcept. My rheumatologist was hesitant to restart the cellcept due to my open wounds & risk for infection & started me on plaquenil instead.

Now I’ve not had any side effects whatsoever on the plaquenil, but don’t think it’s done anything to help heal my wounds or prevent new ones from forming. But I have noticed the neuropathy improving lately, & as I write this, wonder if the plaquenil has had anything to do with the improvement??

Sorry for the long reply, but I hope this kind of helps to answer your question. I also hope this combo of meds will help with your neuropathy & sooner rather than later! Good-luck & keep in touch!

Aimee

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Since looking at these posts I’m beginning to wonder if there is any limit to the different flavors of autoimmunity. The line between them can be pretty blurry. I’m not sure that there is a smoking gun application of plaquenil on its own for neuropathy, but I suppose that that doesn’t mean it isn’t ever used for that purpose. It is used with methotrexate for some indications of Sjogren’s but I don’t think that neuropathy is one of them. So your doc isn’t doing to reintroduce the cellcept and he’s kind of throwing in the towel on the ulcers. Maybe he’s just giving the plaquenil more time. Anyway, that’s great that you caught a break on the neuropathy. I don’t think that it remits like that very often. You have half the battle won at least. Thanks for the info and best of luck.

@aimeenc

Hi @johnwburns & @colleenyoung! Thanks for adding me to the conversation @colleenyoung.

I’ve actually taken both cellcept & plaquenil & haven’t ran into too many side effects on either. I was originally put on cellcept for what my rheumatologist thought was cryofibrinogenemia & some other autoimmune disease (similar to lupus) that had yet to “reveal itself” according to my rheum. While taking the cellcept I also had positive wound biopsy results for livedoid vasculopathy.

The only real side effect I had from it was some occasional nausea. However, as with any immunosuppressive medication, I did get more frequent infections (colds & flus thanks to 2 young kids in daycare & wound infections too.) After 6-7 months on the cellcept, Coumadin, trental, & norvasc combo my bilateral foot wounds started to heal & were completely healed a few months later. A couple months after my wounds had healed, my rheumatologist decided to take me off the cellcept since I had been negative for the cryofibrinogenemia and the livedoid vasculopathy (LV) wasn’t necessarily an autoimmune disorder. However, a few weeks after stopping the cellcept I exploded with new ulcers & also started to develop pretty severe neuropathy in my legs & feet that just kept getting worse the longer I was off the cellcept. My rheumatologist was hesitant to restart the cellcept due to my open wounds & risk for infection & started me on plaquenil instead.

Now I’ve not had any side effects whatsoever on the plaquenil, but don’t think it’s done anything to help heal my wounds or prevent new ones from forming. But I have noticed the neuropathy improving lately, & as I write this, wonder if the plaquenil has had anything to do with the improvement??

Sorry for the long reply, but I hope this kind of helps to answer your question. I also hope this combo of meds will help with your neuropathy & sooner rather than later! Good-luck & keep in touch!

Aimee

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Welcome back @aimeenc!

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