Unspecified Myopathy

Posted by jlw @jlw, Mar 13, 2020

I was started on Mycophenolate 2 weeks ago. I have Unspecified myopathy (after seeing many specialists in Illinois, St Louis and at Mayo), many lab tests, radiology studies, muscle and skin biopsies, but it can’t be specified any further. That has, of course, been frustrating after 17 months of extreme symptoms. Last year my primary doctor tried 2 different rounds of immunosuppressive drugs. One had no affect and the other had a side effect that was so significant we had to stop it. The Mayo neurologist recommended steroids ( which I am now down from 60 mg daily to 40 mg daily) and could consider Mycophenolate. I started this on February 26, so I know it can take quite some time to work. Sadly, my symptoms are worsening but I stay hopeful this one will help. Just wondering if anyone else has taken this medication for this type of diagnosis and if it helped. Thanks so much.

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John, Volunteer Mentor | @johnbishop | Mar 13, 2020

@jlw -- I was reading through several of your posts and noticed that you have been to Mayo Rochester and had genetic testing that determined you didn't have DM2. @becscuddy had a link to another discussion for Distal Myopathy which it looks like you saw and possibly read through the discussion -- Did you see the link to the Myotonic Dystrophy type 2 discussion? https://connect.mayoclinic.org/discussion/myotonic-dystrophy-type-2/

My experience with steroids is with prednisone for PMR and it was pretty same day effective to eliminate the pain. Did the initial dosage of 60 mg daily reduce your pain symptom? Just wondering if you are able to discuss it with your Mayo neurologist.

jlw | @jlw | Mar 15, 2020

In reply to @johnbishop "@jlw -- I was reading through several of your posts and noticed that you have been..." + (show)

Thanks for your reply. I had checked out that discussion, but since my test was negative for that, I looked for things more specific to me. I follow up with my primary doctor on the 25th. We, sadly, have not heard a word from my Mayo specialist but, trust me, I have no problem being the squeaky wheel and I will make sure I am heard. I know the Mycophenolate doesn’t work overnight, so I am trying to be patient in that regard and give it some time. I just didn’t expect symptoms to worsen like they are. As for the steroids, the side effects get so harsh for me, that’s why my primary and I are trying to decrease those. They are just so harsh even though they help. It’s like a double edged sword. Thanks again!