Question on Prednisone

    • Anonymous
      May 16, 2008 at 3:21 pm

      Quite a few of you had written where you had a hard time getting off Prednisone. What problems did you have? I started out on 70 mgs a day for about 6 weeks and no improvement with the CIDP, so the neuro upped it to 100 mgs a day. After another almost 6 weeks, still no improvement so he prescribed P/W and to wean off of the Prednisone 10 mgs every 3rd day. Tomorrow till be the last day at 10 mgs and so far I don’t have any negative effects (that I know of).

      I’m just curious as to what to look for.

      Thanks in advance.

      ken

    • Anonymous
      May 16, 2008 at 6:56 pm

      What does P/W mean?

      I’ve never seen that abbreviation before.

      Kelly

    • Anonymous
      May 16, 2008 at 8:24 pm

      [QUOTE=Emily’s_mom]What does P/W mean?

      I’ve never seen that abbreviation before.

      Kelly[/QUOTE]
      I meant P/E or Plasmapheresis… sorry for the confusion.

    • Anonymous
      May 16, 2008 at 11:08 pm

      Ken,
      I was on prednisone (up to 100 mg/day) and solumedrol (1000mg IV / week). I never felt like it benefited me. I felt like I had an unbelievable amount of energy at times but I didn’t feel like it helped with supressing CIDP. I tapered down off the prednisone and continued with the solumedrol. I was down to 1000 mg every two weeks and I told the Doc I couldn’t do it anymore. I never felt any side effects from not tapering off the solumedrol. I know it is probly not recommended but for me there was no side effect of being off of them worse than the way they made me feel when I was on them. I hated the roids

      I currently do P/E and it works well for me. I also take Cellcept.

    • Anonymous
      May 17, 2008 at 9:46 am

      Everytime I decreased the prednisone I would become weak and had all symptoms of my CIDP. I was just decreasing by 10 mg at a time as well. I am glad to hear that you don’t have symptoms! Its a good thing.:)

    • Anonymous
      May 17, 2008 at 6:20 pm

      [COLOR=black]Hello Kenneth,[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]How were you doing when you we taking only prednisone? Let me tell you my story and see if they are similar. I start with the typical 5 days of 1 g of Solumedrol infusion. I then started with 120 mg every other day of prednisone for 4 weeks, and then started a taper of 10 mg every fourth dose. By the time I was to 85 mg, I was not doing well. I went to 85 mg every day. That stopped me from getting worse for about a week, so we thought it might be okay. I then started to taper alternate doses by 10 mg once a week. That caused me to fail again. By the time I agreed to the PP, I was in bad shape. The PP took a while to kick in, but it did work. I continued to taper the prednisone throughout and continued with PP as needed. This combination worked well, but I did not want to be on prednisone long term. [/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]Once I was off prednisone, I tried just PP, but the intervals between treatments got shorter and shorter. I had started CellCept, which did finally stop the shortening, but it did not reverse it. I finally stopped CellCept and went back to prednisone, continuing with PP (also azathioprine to try to limit the prednisone; that experiment is still in progress). This combination therapy allows me to continue working and to live my life close to normally.[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]So, if PP is not working and prednisone was not working, try both. If prednisone was working, keep using PP as well; it will most likely help you use less prednisone.[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]MarkEns[/COLOR]
      [FONT=Calibri][SIZE=3] [/SIZE][/FONT]