alfredsr2

Activity

• Myasthenia Gravis
  

  Al

  Posted by: alfredsr2

  Last Reply: Nanosecond 10/17/2023

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  hello.  Does anyone know of a drug called privigen.  I started in as an infusion for myasthenia.  Thanks in advance for your input.

• Myasthenia Gravis
  

  Discussion Comment

  Posted by: alfredsr2

  Posted: 12/25/2020

  alfredsr2 commented on the discussion Merry Christmas and Happy Holidays!.

• Myasthenia Gravis
  

  soliris

  Posted by: alfredsr2

  Last Reply: cgreens 07/01/2020

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  Hello all.  Hope all is well with all of you.  My post concerns the soliris treatment.  I am looking to get information on the proceedure, side effects and any other important or helpful hints.  I am hoping to get my first infusion in August.  What should I look forward to?  How long is the session?   What should I expect on the first day?  What is the protocall?  How often?  I have a port, will they use that?Any and all information will be helpfull.  Thanks, Al

• Myasthenia Gravis
  

  Discussion Comment

  Posted by: alfredsr2

  Posted: 03/31/2020

  alfredsr2 commented on the discussion IVIG and general improvement.

• Myasthenia Gravis
  

  New experience

  Posted by: alfredsr2

  Last Reply: Rhanson 02/25/2020

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  Hello all.  I have had MG since 2015.  I currently get IVIG every 4 weeks for 5 days.  I take 250 mg of imuran and take 15 mg of prednisone daily.  Over the last few months I have been having a day of uselessness.  It happeens about every three or four weeks apart where for a complete day I cannot function.  I am exhausted, full of pain and chills.  I am not sure if it is part of the progression of the MG.  I am wondering if anyone else is or has had those episodes or if this is new and...

• Myasthenia Gravis
  

  giving blood

  Posted by: alfredsr2

  Last Reply: cgreens 02/13/2020

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  Hello all.  I have been getting IVIG since 2016.  I get the treatment monthly for five consecutive days each month. I am also on 250  mg of imuran and 20 mg of prednisone daily.  Is giving blood out of the question?   Thanks, Al

• Myasthenia Gravis
  

  Discussion Comment

  Posted by: alfredsr2

  Posted: 12/25/2019

  alfredsr2 commented on the discussion How to Shed It.

• Myasthenia Gravis
  

  MG AND THE BLADDER

  Posted by: alfredsr2

  Last Reply: TXron 08/18/2020

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  Hello all.  I have had MG for about 5 years and have plenty of issues and posts.  I am currently having bladder control issues and while at a visit with my PC the other day he mentioned that the MG could be a contributing factor.  I have not heard that before and was wondering if anyone else has had this issue.  My PC said like the MG affects the lung muscles, it also can affect the bladder the same way.  Any ideas?  I will visit my Neuro this week and will ask her about it.  I wanted to...

• Myasthenia Gravis
  

  Discussion Comment

  Posted by: alfredsr2

  Posted: 07/20/2019

  alfredsr2 commented on the discussion Reaching out.

• Myasthenia Gravis
  

  Reaching out

  Posted by: alfredsr2

  Last Reply: alfredsr2 07/20/2019

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  Hello all,  I am reaching out to anyone who has had any experience with the drug soliris.  I have been on IVIG since 2016.  I get it on a monthly basis for five days a month.  Lately there has been a shortage and my Doc want to change me drug to Soliris.  I do not know enough about it and neither does she.  I know it has some side effect. I know there is a process in geting it.  But I don't know if it works or if its worth the change.  I would like to talk to anyone who has any...

• 

  New Friend

  Posted by: alfredsr2

  Posted: 03/19/2019

  alfredsr2 became friends with Calliope.

• Myasthenia Gravis
  

  gammagard ivig infusions

  Posted by: alfredsr2

  Last Reply: Canadiangal03 06/12/2019

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  Hello all.  I have a question concerning the gammagard ivig infusion.  I have been geting the ivig infusion for the past 3 and a half years on a monthly basis.  I go each month for 5 days  and get 50 ml each day for a week.  Just recently I was told that there is a shortage of the gammagard.  Has anyone else experienced this problem?  Because of this shortage I had to extend my infusion from every four weeks to every six weeks.  This is not good for me.   Just recently my infustion...

• Myasthenia Gravis
  

  tongue biting

  Posted by: alfredsr2

  Last Reply: Nanosecond 05/01/2019

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  Hello all.  Does anyone know if there is a connection between MG and biting the tongue?

• Myasthenia Gravis
  

  agent orange

  Posted by: alfredsr2

  Last Reply: PeterL 08/23/2019

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  Hello.  I was wondering if anyone knows of any connection between agent orange and myasthenia gravis, lupus, or md?  Thanks, Al