IVIG is putting me in remission

Mike,

I’m very fortunate to live in the Houston area where I have access to some of the best medical care in the world. My neurologist refused to put me on any kind of steroids unless it was an emergency. He insisted on IVIG only and I’m very grateful.

Like you – it hit my arms the most. And like you, I was extremely physically active. Unlike you, I am a 59 year old recent divorcee (talk about added stress!!!) and my illness came on very slowly for a very long time – almost 9 years – and it took me moving here after my divorce and changing doctors before someone took me seriously.

I went from dancing 4 nights a week, working out daily, working full time and boating and water activites on the weekend to NO physical activity, complete exhaustion, high pain and working part time in a matter of months.

It’s been a year since I was diagnosed and placed on IVIG treatments. The co-pays were expensive and stopped after I reached $5,000 limit of out of pocket for this year. Worth EVERY single penny!

I started with the normal load dose of 4 days (because I was so healthy, I received a regular 5 day load dose in 4 days). We then went to 1 day every 4 weeks. Didn’t do the trick, so 2 days of IVIG every 4 weeks. That resulted in a small roller coaster ride, so I am now on 1 day every 2 weeks. Works wonderful for me as I stay at a constant level! Also helped me at work because I now work a compressed schedule (M-T, 9 hour days, 1st Friday off for treatment and then an 8 hour day the second Friday of the payperiod). I’m also a gov’t employee and now don’t have to take leave to get my treatment.

This is exactly right for me – but it took us almost 9 months to come up with the correct treatment for me. As others have said here, each person is different and requires a different protocol.

The IVIG is kicking my CIDP into remission. I no longer suffer the extreme fatigue (a high stress day can take away my energy, so I do experience energy drain occasionally – but that’s normal for a lot of folks). But I still have to deal with the pain. And for that my doctor has me on Namenda. I absolutely love it. Another person in this forum tried it and it did not work her. But it’s been God sent for me.

I still take a lot of meds before bedtime because I still can experience the extreme muscle seizures/attacks that bring me out of a sound sleep and cripple me up with cramping head to toe … so I now take 300mg of gabapentin with my 10mg of Namenda at 7:00 pm. Then at bedtime, I take 600mg of gabapentin, .5mg of klonopin and 50mg of nortriptyline. Works great! No cramping through the night anymore.

So where am I now? I’m back to dancing 3 nights a week, working full time (I manage 2 engineering teams), enjoying my friends and dating again. The numbness in my feet/legs is decreasing and I can now do my own grocery shopping (used to cry everytime I had to push a grocery cart). I still cannot do the yard work I used to love as my arms really don’t like it and let me know! So my lifestyle is modified but improving each week. And I believe I will be able to resume my full level of activites in this coming year.

I have an amazing doctor who works very closely with me … everytime I go, I take a little pocket diary with me where I annotate anything regarding meds/attacks/numbness/etc. He says it helps him to help me.

So with your doctor, I hope you will be able to get the IVIG since you know it works for you.

I’m on Skype if you want to talk – you can see my Skype name in my profile. I wish you the very best!!!