@JasonUT I don't know how I missed this thread and thank you so much for tagging me! I am happy to help provide info re: IVIG and feel free to send me a PM if other questions.
Doc states that my N-type calcium channel Ab and Neuronal K+ channel Ab are slightly elevated. It is possible that this could be a false positive. However, he did state that N-type calcium channel Ab can affect Acetylcholine function and is associated with POTS.
I had no idea that anyone else (currently) on PR was diagnosed with the N-type CA+ channel Ab like me! (I am negative on the K+ Ab). I was initially diagnosed on the PAVAL Panel from Mayo in 2016 and recently re-tested the Abs after two years of treatment, except this time we did the DYS1 Panel (Mayo autoimmune dysautonomia eval) that you just did. I do not have the results back yet.
Can I ask why your doctor thought it might be a false positive? That is interesting that your doctor said the N-type CA+ Channel Ab is associated with POTS and I did not realize that there was a connection. Did s/he say anything more about this?
Pyridostigmine trial didn't appear to work either. It had the opposite effect of Galantamine. Oddly, it made me feel very mentally slow and grumpy which don't appear to be listed side effects. Almost like I was drunk. Neuro Doc recommended I stop and I asked if a slow taper is okay. We agreed to a 2 week taper.
Are you being followed by a neuromuscular specialist? I apologize that I was not able to read your entire thread but was wondering what your main symptoms are? Do you have POTS, muscle weakness, or breathing weakness?
I also did not do well with a very low dose trial of Mestinon (Pyridostigmine) in 2014.
Neuro doc resubmitted IVIG Rx again due to slightly elevated VGCC and VGKC antibodies:
- N-type calcium channel Ab (VGCC) 0.10 (normal < 0.03)
- Neuronal K+ channel Ab (VGKC) 0.07 (normal < 0.02)
My main doctor felt that IVIG was the only logical starting point to treat these autoantibodies and in my case, he was 100% correct. Do you test positive for other auto antibodies besides those two? Have you done the Cell Trend Panel from Germany?
Four IVIG infusions are scheduled for week of Oct 15. I've been told to plan for 4-5 hour infusions since this will be my first time.
So will you be doing high-dose IVIG in a 4-day split dose?
Trying to figure out how best to prepare for IVIG and strategies to minimize side effects.
@Gingergrrl @Learner1 @Ema @Nickster @helen1 @HeleneG @Jesse2233
Any feedback or recommendations?
I have tons of recommendations and not sure how much info you want?!
1) Get tested for Hughes/ Anti-Phospholipid Panel before IVIG to make sure you are not a high blood clot risk.
2) Do as slow an infusion speed as humanly possible to reduce risk of aseptic meningitis, blood clots, strokes, and the severity of the IVIG headache that you will get. My maximum speed was 40 (which is insanely low) but it allowed me to do 82 grams of IVIG each 3-day cycle.
3) Make sure that you take the proper pre-meds for your individual case. I have MCAS and was considered a high anaphylaxis risk when I started IVIG. The ideal pre-meds for me turned out to be Atarax, Pepcid, and Tylenol and I did all my treatments at an outpatient infusion center (but many people do them at home if not an allergic risk).
4) Not all brands are the same and my MCAS doctor felt I had the greatest chance of tolerating Gamunex and was right. Some have higher IgA levels than others and in your pre-IVIG blood work, make sure that you do not have autoantibodies to IgA or this greatly increases your chance of allergic reaction (I did not have IgA autoantibodies so it was not a risk factor for me).
5) Most people do well with extra fluid, but I do poorly with it, so I did nothing but Gamunex and then D5-Dextrose to flush the line at the end (b/c Gamunex flushes with D5 vs. saline). Other brands can flush with saline though. Most people do saline before or after, but I can't tolerate that much fluid based on my history, and my IVIG alone took 7-8 hrs with my slow speed. You also would never run them concurrently per both of my docs and another autoimmune specialist that I consulted with. Many people do well with steroids, but I do not, so I did not take them.
Hydration before and after, a slow flow rate and potentially steroids or Benadryl depending on how reactive you are. I would not hesitate to run it all day the first time and then try speeding it up later. But
@Gingergrrl will have better info on flow rates for you.
Thanks
@Ema and we tailored my IVIG for greatest chance of me successfully tolerating it, so what I did might not be necessary for everyone, but it definitely worked for me. Hope this helps!