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  • July 8, 2017 at 11:37 pm

    I usually see improvement in motor skills/functions around day 2-4 with more improvement over 7-10 days. Around the last 3-4 days of cycle I can notice decline…sometimes none, sometimes mild, and sometimes moderately pretty quick over those few days. I lately am noticing what seems like more chance of fatigue but not always just like the post infusion day headache.

    July 7, 2017 at 12:55 am

    I am at 15 months and still doing arm/hand sticks. I too can be a tough stick but the nurses at infusion center do a good job of getting it first try most times. Discussion of ports has not come up with doc yet

    July 6, 2017 at 10:00 pm

    Lumbar puncture wasn’t as bad as all I had heard and anticipated, (although I have kind of a high pain tolerance too) but if I had it to do over, I’d have told the resident and her observers who came in and guaranteed they had plenty of experience to get out and take me to interventional radiology. They tried twice and failed each time before I said enough. IR was a way better experience although I think the first attempts contributed to a not as “clean” report on the LP, but results were indicative of CIDP. A little headache afterwards and had to lie flat on back for a couple of hours.

    July 5, 2017 at 11:54 pm

    Ive been on Prednisone for quite a while at different strengths from 10 to 120 mg a day. I dont think it helps much but the neuro throws higher doses at my cidp when the ivig isnt working as well as usual. At 10-20 mg+ my vision gets blurry, and right now my sleeping hours and patterns are horrible, have gotten increased eye pressure so Im on glaucoma meds and now have drug induced diabetes. We are on another taper down schedule I hope we can stick with.

    If it works for you with minimal effects, great, but be aware it can be problematic. Oh, yeah, Im also up about 30 lbs and with the cidp walking/balance issues, exercise is kind of limited to get the weight off.