Reply To: 3rd IVIG not as effective?/relapse?
Hello there- hope you are doing well today! In terms of prednisone I have taken only a few times for relapse until I could get loading doses of ivig but I tolerate it very poorly- very jittery , can’t sleep, stomach pain. Before considering adding another drug to your regimen , you might want to ask for more frequent ivig as it is safer and will not suppress your immune system and put you at risk of colds/ infections. I myself have not noted a large increase in colds/ infections on imuran but when I do get sick it is def worse and usually end up on antibiotic for sinus infection. Prior to immuran , I never required antibiotics. I also lost weight with my initial dx of cidp largely due to a huge loss of muscle mass- when your nerves are not serving your muscles properly you will get atrophy of muscles- as I have stabilized this has improved and my weight is about what it was before I got sick. In terms of hormones, I do notice a change of my symptoms for the worse when I am cycling. I also take fish oil and started turmeric as was recommended by a rheumatologist- it has a known anti inflammatory effect. Gluten free did not help me and I actually had the biopsy of small bowel which was negative for celiac- you have to be careful with gluten free to get nutritions grains – a gluten free diet can run the risk of low fiber and lack of nutrients like b vitamins found in whole grains. Hope this helps!