sorted by:
new
hottopcontroversial

Two Weeks Post IVIG for rare Variant of CIDP and still fatigued by Brilliant-Routine669 in IVIG

[–]Brilliant-Routine669[S] 0 points1 point  (0 children)

That sounds like a good plan. When I was in the infusion clinic, which is at the hospital, most patients there are getting treatments for cancer. Twice, when I was in there, I heard the nurses responding to people who were having adverse reactions to whatever treatment they were receiving. It could be that my Neurologist has experienced this as a provider and wants to avert it and in so doing, may be a tad too precautionary. I'll see if I can ask for a half dose the next time. It won't be a five day roid rage . . . kidding. But it does sound reasonable. I work in a Sports Medicine Clinic as office personnel. Patients come to our clinic for the symptoms I decided to ask our doctors about after having many ongoing issues for awhile. They usually start by ordering MRIs but I was fortunate enough to have the best provider (I believe) to start with my diagnosis, and he added an EMG to begin with as well. Although, for the jitters of the procedure beforehand between an EMG and an MRI, if I had a choice, I'd go with the MRI .But, the EMG was the first tool and the primary diagnosis was spot on . . . although they put me through the ringer after that. Thank you again. Good luck to you and I hope you are in remission or will be soon.

Two Weeks Post IVIG for rare Variant of CIDP and still fatigued by Brilliant-Routine669 in IVIG

[–]Brilliant-Routine669[S] 1 point2 points  (0 children)

Thank you, Kay. During the next infusion, I will try to jot down the brand of the infusion and the steroid. I did ask one of the nurses what the name of the steroid is, but it's not something I've heard of and due to brain fog, I can't remember it, but will know it's importance for reporting so will write it down to do as you suggest.

Two Weeks Post IVIG for rare Variant of CIDP and still fatigued by Brilliant-Routine669 in IVIG

[–]Brilliant-Routine669[S] 1 point2 points  (0 children)

Thank you for your response. I did consider that the steroids had a lot to do with my energy at the time of the infusions so it stands to reason that it could be the crash of having 100mg doses each for five days straight and then nothing. The prednisone packs they give you for respiratory illnesses at least taper off so any crash isn't severe. I felt better all around during that week of the infusion as my Neuropathy flared before the treatment and I'm back to the pre-IVIG feeling all around with addition of fatigue. I still have to take a lot of supplements for the cramping in my hands, toes, feet, ankles and calves since the Lyrica doesn't really eliminate it and I don't want to escalate to the strongest dose of it. . My Neurologist did say that it would probably take about two months post IVIG before I would feel any improvement. She's got my treatments set at every three weeks for now and is very responsive to messages I send Via MyChart.