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  • RQManchester
    I have a what do you think question?  I was all set to stop taking my Rebif, that I have been on for 16 1/2 yrs at my appt. this spring.  I had decided -- all was set in my mind!  I will be 61 years old in May.  I had heard that the chances of relapse are much less after age 60.  Interfeurons can put you in a negative state of mind more often than not.  Well, then along came coronavirus.  So, am I more concerned 1) with being able to fight off the virus on this drug or 2) am I more concerned with relapse if this virus whips me into shape?  Should coronavirus change my plans?  I really liked those plans.  What thoughts are you all having on various dmds?  One of my problems with coming off is that I won't be able to be monitored as I would like, due to nonessential mri's not being performed.
  • maria1
    Is there still disease activity that the dmd is controlling? My cousin is 74 and only stopped her drug because of a snafu with the insurance company. If the drug is controlling the disease why would you want to stop. I stopped at about 69 only because it was no longer effective and I had no other choice. 

    ms is a chronic illness that does not cause death just a lot of aggrivation throughout life. If the dmd is not working then there are supplements that can bolster the immune system. As we age we deteriorate enough sometimes to not know if it is ms or old age. I read a piece that says as we get older the ms affects our cognitive life the same as alzheimers. I am 73 and can no longer count or add anything in my head. The guy delivered dirt yesterday and I counted the bags and came up with three different totals, and I USE TO BE A BANKER!

    It has been said that we all will get it, the virus, I have two cousins with it already and two more probable and I am far away so I can not aid the family. I did read, that we ought have chicken soup ready for when we get it to not wait until we get it to make chicken soup, that it will slow down once the temp hits 70, that it stays on the soles of the shoes for hours and on cardboard boxes.

    If you think the dmd is delaying the progression of the disease giving you some semblance of independence why give that up. I can not live alone, I can not take care of myself, yes there are plenty of things i still do but I do not ever take forgranted the idea that I will no do something stupid. Burnt dinner is on the menu more often than undercooked foods. I was making chicken soup the other night, came in, sat down and was watching tv smelling something good, I smelled it for an hour before i realized the soup was still cooking.
  • RQManchester
    Coming off would be based on evidence that after age 60 (Cleveland Clinic) you are relatively safe. Maybe some disability proression, but mostly okay. They are doing a big trial through pcori.com to see when it is safe to stop dmd's. I would take that chance, be monitored closely, and have a better quality of life. That is why -- but it appears that God has a purpose for me to stay on this drug, so I guess I will continur to muddle through.  Thank you for your reply.
  • maria1
    When I did stop the dmd the doc told me to just stop and I got REBOUND all the symptoms plus a few new ones hitting all at once for more than two months. There are no data for stopping dmds so consider weaning instead of cold turkey. I was injecting betaseron for more than twenty five years.