Takes several months on IVIG …

March 1, 2010 at 7:20 pm

When my doctor first told me about the IVIG treatment, he stated most patients that have a positive experience with the IVIG, feel better after 3 treatments. Since the first round of IVIG consisted of 5 days in a row, I thought by day 3 I would feel better! :confused: But I didn’t – in fact I felt horrible. When I called to find out why I wasn’t feeling better, he explained the first treatment consisted of 5 days (rather than 5 separate treatments). 😮

After the loading treatment, I then went back every 4 weeks for another treatment. After the third treatment/month, I did start feeling better, but still had the fatigue, pain, etc before time for the next treatment. So he doubled my Rx and I then went for 2 days of IVIG (still considered 1 treatment) every 4 weeks. I still seemed to have the highs (surge of energy a few days after treatment) and the lows (crashed energy and elevated pain) before the next scheduled treatment.

Now I go for one day every two weeks. The difference this is making is night and day. It is obvious this is the correct treatment regimen for me. I am slowly making a recovery and find I can do more for longer now.

So, don’t give up yet! The side effects of steroids can be really bad so I would recommend (as others have) that you give the IVIG more time before resorting to steroids.

One of the biggest hurdles for me was realizing things don’t go as smoothly as we are first led to believe when first diagnosed! After that, I came to terms with the fatigue and pain and adopted a more holistic approach to my health. The pain can still be an issue, but I am on a great pain mgt program, so it’s not nearly as bad as it once was.

Good luck!