sorry to hear about your post IVIG experience – the first bit i would get Chest pains with infusions and rashes.. we found that slowing down the rate helped tremendously… I had the exact same thing – blisters on my palms that were itchy… also some ezcema spots on my legs popped up…. with rate, and now doing ivig for 5 years, it has all simmered down and i only get rashes when i Don’t have my ivig, or get exposed to sun..

drink LOTS of water with your IVIG as well, which will help..

Good luck, sorry you’re a member of this club! 🙁

sorry to hear about your head – that can be miserable! I have gotten aseptic meningitis a few times and its brutal… If they have Toradol ask for that (it was amazing for my head).. Otherwise I’d say slow your rate down.. If I go above 100, i start spiking a temp and getting meningitis symptoms… hydrate of course.. and sometimes people have to do steriods if they can’t avoid the headaches. Good luck! Oh and ibuprofen works better than tylenol for the headaches and symptoms I think.. Good luck!!! Hope you get some relief!

I got eczema like patches on my legs when i first started ivig.. very very itchy as well.. With time I don’t get them anymore (been doing this for over 3 years)

sorry to hear about your marrow results! ugh.. will the rituxan help your CIDP too, so maybe it will help both? Do they think that the CIDP was a paraneoplastic issue preceeding the cancer? I have anemia (new onset as well).. but my WBC are very low too (normal platlets).. We are just starting the search as to why.. good luck and keep us updated

I have been having this more and more recently – on the tops of both feet…. they started out numb.. and then they got to the point where if anything rubbed up against the nerves it would zing all the way down.. now if I wear any shoes that touch the top of my feet they feel tingly and really painful.. if I wear them for long it becomes unbearable, especially if I haven’t taken my lyrica (I can’t sleep without that.. as I wake up all night long shaking my limbs that feel asleep).. I can’t wear any tennis shoes/athletic shoes anymore, as it just is too painful…

sorry to hear your going through this.. no fun! Some people can also get weaker with prednisone- steroid myopathy.. Are you doing maintenance IVIG on a schedule, or only when you are in “crisis”? From what everyone says on here, it seems the general thought process is that you need to get IVIG (if that works for you), before you feel like your backsliding symptomwise… they say that if you feel like you are declining before your next infusion that permanent damage may be happening
I know with me- I only had very mild muscle atrophy when I was initially hospitalized (it had been going on for a couple of months at that point), but the atrophy appeared to be going very fast.. once I got IVIG initially, the atrophy seemed to dramatically slow.. I do have some progression in atrophy diffusely over the past 2.5 years, I always wonder if it is atrophy from the initial trauma of it all that just slowly showed up (delayed appearance), or is muscle damage continuing? I am much much stronger than i was 2.5 years ago, so who knows!

Any virus/illness and stress exacerbates my symptoms and can send me into a relapse, which is incredibly frustrating… currently having that now, thanks to a nasty cold and cough!
Good luck!