How do the long term steroids affect you?

I was put on steroids at first too and had the same problem. I felt like i was going crazy and could not sleep. I insisted I be taken off them and put on IVIG. It has been 5 years since I was diagnosed with CIDP and have been on 35 grams every 4-5 weeks of Gammunux and doing fantastic. I have hardly any symptoms of my CIDP as long as I get my infusion within the 4-5 weeks. I have not had any further damage to my nerves either. So I would talk to your neurologist about putting you on a maintenance dose of IVIG and see it that is better. I was so miserable on the Pred that I decided I would never go back on that stuff again. Good luck to you.

I have good insurance. I get my infusions in the comfort of my own home. Have the same nurse now for a few years so she is really good. Since i get them at home the bill is coded under in-home nursing care and I don’t pay anything. But I do know the infusions are very expensive without insurance. My old insurance company use to bill me for the Gammunex and everything associated with my infusion separately. The bill came up to around $10,000 or higher every month. I had to pay my out-of-pocket every year and then insurance kicked in for 100%.

In my case, I started a high dose of 70 mg/day in mid November. I saw immediate improvement in strength in my legs and it jumpstarted my walking. I began slow tapering doses after a month or two. I’ve experienced weight gain, bloating in my stomach area, swelling feet when I’m vertical, the round face, acne, and insomnia. I gladly take the side effects to be able to walk again! We’re continuing the slow taper to get to a point where the CIDP is controlled, but no side effects occur.

I also receive my monthly IVIG treatments of 5 days. My insurance covers home health so I have a company I work with that sends a nurse out to my home to administer the IVIG.

What you describe sounds like what I have when the steroids are too high. I’d try backing down by 2.5 or 5 mg for a week (maybe even two if you tend to be med sensitive) and re-evaluate. See if maybe there’s a better compromise dose point for you where the steroids are still doing their job, but not messing you up so badly. I also find that I tolerate the steroids better when I split them into 2-3 doses per day rather than one big dose (like one dose with each meal type of thing to reduce the risk of being wired at bedtime).

@arielsstars While your input is valuable, I think it’s best he consults with his neurologist before reaching that conclusion as he did mention that the neurologist is planning to taper him down. Self-diagnosing is dangerous if you don’t know what you’re doing and can be detrimental to your recovery if tapering is done incorrectly. Hopefully Bryan and his doctor can figure out what will work for him as well.