Moved over to SCIG-does not appear to be working?
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May 16, 2020 at 8:12 am
Hi everyone, looking for anyone that may have experience moving over from IVIG to SCIG.
I had been experiencing some improvement in IVIG after 5 treatments and then moved over to SCIG (subcutaneous method of injection). Tinning seemed good with the whole covid thing going on and risk of hospital visits.
Since moving over 6 weeks ago, my symptoms have been getting worse-numbness, flashes and nerve pain. Having seen three different Neurologists initially (2 of which are specialists in CIDP/GBS) they are really hesitant to introduce other options such as corticosteroids etc. Seems the only answer I keep getting is give it some more time and we will see. They have suggested that a boost of IVIG may be the next step but that’s it.
Have any of you gone through anything similar ? I am quite concerned if we don’t get a handle on this it may just get progressively worse…Thanks!
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June 4, 2020 at 10:03 pm
My symptoms go back and forth. There are a few rare days when I feel like 85% of my old self and other days where I have numbness and it feels like I have wooden legs. Just don’t let it progress too far….
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June 6, 2020 at 8:36 pm
I switched from IVIG to SCIG about 8 months ago. I switched because I felt my condition was getting progressively worse between each infusion and was not getting that much better after the infusion. SCIG appears to have taken the dips between infusions out, but I still feel like I am on a slow decline. The self administered infusion is sure handy though. Just relocated, from Houston TX to Birmingham AL, so will be addressing this slow decline with a new doctor as soon as possible.
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