Reply To: Will I ever be better?
I know everyone is different, but I can tell you I have had amazing success with immunosuppressant drugs, specifically Cellcept. I went through the 6 month prednisone program, topping out at 100 mg for 30 days, I weigh over 200 lbs. Tapered 10 mg every 2 weeks. I’ve been on Cellcept for one year now, and only Cellcept without Prednisone since mid-October and I feel probably as good as I could ever be. I’m 50 years old and today I was out digging a 2 foot deep trench in a friend’s yard. I was running on a treadmill this past January.
I know my CIDP is not in remission. I know this because when COVID hit I was concerned and asked my doc if I could cut my Cellcept dosage in half. He agreed and for the first 2 weeks all was good, then I started to get very mild tingling again so I immediately went back to my regular dosage and shortly felt back to normal again. So for me, I know the exact dosage that works for my body now.
I have not once used IVIG, I elected to go this route from the moment I was diagnosed, and I am glad I did. I am happy to have a more detailed conversation about this if anyone needs help.