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New Med Side effects

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Magghe
Magghe

Ok so I was doing HP Acthar gel (very similar to prednisone, but well tolerated), I still was getting worse in some parts but improved in others.  they main concern for me is sight....when I showed worsening in my blind eye they switched me to MTX and Humira.  I continued the Acthar, added the MTX until Humira was approved.  I get extreme fatigue and nauseas with the MTX and my hair has gone into a major shedding phase but side effects are minimal....now that my body is used to the Acthar Gel.  My Humira was approved so I am planning to start it tomorrow.  Dr. has me on 4 shots for 1st dose...I will stop the Acthar Gel but continue with the MTX.  is anyone else on both? my MTX was just upped to 0.8 per weekly injection and the Humira will be 160mg (4 pens), then in 2 weeks 80mg, then in 2 weeks 40mg on a weekly basis.  I have had 3 independent professionals call me now and its getting a little worrisome.  I was assigned the Humira ambassador, my specialty pharmacy pharmacist is calling to "check on me" and now Walgreens specialty pharmacist has called me to "check on me" all 3 are in relation to the Humira.  I thought the side effects were pretty good with the humira....now im scared to take it because so many pharmacists are taking to time to call me specifically about the Humira.....what side effects can I expect from taking both MTX and Humira.  I was newly diagnosed with neurosarcoidosis with biopsy in February, MRI showed the neuro part...and last october I went mostly blind in 1 eye. any help would be so appreciated !! obviously I have to find a way to be ok with taking theses things so I can retain the vision in my good eye at least.  what about hairloss will it get worse with adding the humira, wgt gain or loss? (I hope that is better after the Acthar Gel., Ive read the shots of humira really burn, the mtx isn't so bad).  Thanks!!

0 likes, 2 replies

2 Replies

  • dnr77
    dnr77 Magghe

    Posted

    Hi M. Is the current blindness die to Sarcoidosis or was it a different issue causing you this? Thank you
    • Magghe
      Magghe dnr77

      Posted

      it was caused by the Sarcoid.  They confirmed the Sarcoid by lung biopsy (no lung issues now though...those resolved..) the MRI showed the Sarcoid on the brain an in the visual pathways.  I really have it lucky I dont experience a lot of what everyone else seems too...but I am terrified of these new drugs.  I typically dont take anything other than Ibuprofen.  So going from 0 meds to 20+ (a lot are supplements to support my immune system and now 2 injectables ) Itts a lot for me.
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