I did not have any PFT or spirometry testing. I could resolve my labored breathing issues by laying down to address the OI and tachycardia.
Thx and I was just curious if you had done any PFT or spirometry testing, and more specifically if it showed pulmonary restriction due to muscle weakness, like it did in my case. I was also able to resolve OI and tachycardia by lying down, and I was even okay sitting, but I was not able to stand or walk prior to treatments.
I started getting my first noticeable side effects after my 3rd infusion. Nurse suggested that maybe 90 grams is the required therapeutic dose for me. I'll have to talk to the doc to determine what kind of follow-up infusions I might need to maintain a sufficient therapeutic dose.
I hope I can explain this well but my understanding (and my experience) is that every batch of IVIG is different and some can trigger severe headaches and immune reactions and others can be mild. It would not necessarily correlate with the dose that you had BUT it could absolutely correlate to the infusion speed being too fast.
I had a few IVIG cycles where I had an excruciating headache, neck stiffness, chills, muscle pain, etc, by the end of the first day (total of 27.3 grams) and then by the end of the second day (total of 55 grams), I was so sick from it that I had to cancel the third day per my doctor. But I had many other IVIG cycles where I did the full three days (82 grams) and I was fine but then had a delayed immune reaction 24-48 hours later.
Sometimes the reaction was very mild and other times, I was very ill. I would not assume that 90 grams is your maximum dose based on the side effects alone BUT if you are already doing 3-4 day cycles at a slow infusion speed, I agree that there is only so much that a person is capable of doing and that might be the maximum dose you can tolerate. I have no idea if that made sense?!
How long would your side effects last post infusions?
It really varied but once the reaction started, it usually took at least 3-4 days to completely dissipate (unless it was a very mild batch/reaction).
How many infusions did you complete before you were 100% confident that the infusions were making a true difference for you?
I regret that I did not keep better records but I noticed VERY early into IVIG that it put my MCAS reactions to food and smells into remission. I was already on a solid MCAS medication protocol but I was still having allergic reactions to food and had to take Atarax (my rescue med) very frequently. Very early into IVIG, the allergic reactions stopped and they have never returned (and I stopped IVIG almost four months ago).
It was unmistakable and somehow the IVIG re-set my immune system away from the allergic reactions and anaphylaxis. If I had to guess, I would say that this occurred by the second to third dose (I was initially only approved for one day of IVIG at a time and the 2-day cycles did not start until the 4th month and the 3-day cycles did not start until the 6th month).
How long did the infusion continue to heal you? At what point did you reach the maximum benefit?
They continued to heal me the entire two years that I did them. Once we added the Rituximab, and other long-standing intractable symptoms started improving, we started to reduce the IVIG interval. We reduced it from 3 wks to 4 wks, 5 wks, 6 wks, 7 wks and finally to 8 wks. Once I was at an 8-wk interval with no return of symptoms, we felt confident that the Rituximab alone was maintaining my remission and we stopped the IVIG (in July 2018).
Do you mind providing more details about your improvements and healing? Currently, it appears that my immediate response continues to be slightly improved energy, improved relaxation and calm, better sleep, and slightly improved appetite. I continue to have problems with chills, aches, pains, and headaches after 5 days.
Do you mean that chills, aches, pains and headaches have been an ongoing problem for you (prior to IVIG) or did you mean that these are the side effects from IVIG? If side effects, this is totally normal and sadly just part of doing IVIG. I knew they were going to happen so I tried not to schedule anything important in the days after each 3-day cycle so I could rest and recover (but this was not always realistic due to family situations).
The three things that I noticed almost immediately from IVIG was that it put my MCAS into remission, it completely eliminated an insanely exaggerated "startle reflex" that had tortured me for several years, and I had some improvement in muscle strength (opening bottles, cutting paper with a scissors, turning on water faucets, etc).
But the major improvements that led to being able to stand and walk without wheelchair, drive my car, walk my dog, begin PT & Pilates, and my severe POTS going into remission, did not occur until after I was well into the year of Rituximab. I really am kicking myself that I did not keep better records but I was so sick at the time and then my mom got sick and passed away.
If these IVIG infusions truly work, then I must mentally prepare myself for a very long healing process and likely many battles with the insurance company.
They were worth it for me and I actually did have to mentally prepare that it was going to be a long process with many insurance battles. As of today, my entire two years of IVIG were retro-actively denied by my insurance and had to be re-billed by the hospital and infusion center. I believe it will be corrected but the situation is still not resolved and I finished IVIG almost four months ago!
. I had multiple articles re: VGCC autoantibodies in 2016, in addition to the info from three Neuros, and wish I could find the links to show you and plan to keep looking.