Hi John! I was getting ready to mention the steroids but others mentioned it already. Are you not seeing any improvements with the IVIG’s? But then I am thinking maybe the steroids too might be causing problems. I think I would talk to the doctor and see what he thinks too. I know this is frustrating for you and the others in here. I have alot of scar tissue in one arm from being stuck so much with IV’s and I can imagine having to have this done weekly how the arms would get with bruising and soreness. Unless you have a Port. But it’s a pleasure meeting you in here and I do hope you will get better soon! Hugs
Yep there are a few of us arond – having weekly ivig. over the last 18 mths i too have been mostly having twice weekly ivig. For the last 9 weeks now i seem to have successfully managed to remain stable on once weekly ivig (yehaa!!) Am also on iv pulse steriods weekly and weekly immunosuppressants. Is hard doing twice weekly ivig but is great when you can cut it back, am not a fan of the needles either and veins are definately not the best yet i put my head in the sand etc whenever portacaths are mentioned!!!!. Have just had two weeks camping with my young family and my neuro arranged for me to visit the closest hospital to continue with the weekly treatments. Am hoping for greatness this year and plan to reduce the pulse steriods or the ivig early feb when i see my neuro again. All good things take time huh.
All the best and keep us posted.