I was diagnosed with SCLS in 2014 and have been on IViG ever since, without another attack until Monday, 1/21/19. The attack probably happened because I delayed my dose by two weeks longer than the recommended every 4 weeks.
As soon as I realized I was having an attack, I took a homeopathic remedy I have had on hand "just in case", since 2014. It immediately gave me quite a bit of relief. I continued taking it as prescribed and got an infustion at ER per my doctor, as soon as I could get in there - about 24 hours later.
My symptoms improved immensely over these 24-48 hours. I still had minor swelling at my ankles and thighs and intermittant sense of heaviness and lethergy for a week or so after this, but it did not progress to a full attack.
Of course there is no way to prove any of my symptoms would have been different without either the homeopathy or the IViG. Maybe this was always just going to be a really really minor attack. However, I do think it is worth mentioning because Dr. Druey has told me that giving IViG after an attack has started doesn't usually work well.
My belief is that the homeopathic supported my body to an extent, and that the IViG was able to be more effective because of it. I also feel it is *possible* I might have avoided a full-blown attack with the use of homeopathy alone.
I am not going to say which remedy I took because it was prescribed for me based on my specific physical symptoms combined with aspects of my personal, mental and emotional makeup. My remedy would not be appropriate for everyone.
If you want to try homeopathy, it's important you find a very experienced, knowledgeable practitioner and have them help you find the right remedy for you.
blessings,

Cathy

I'm glad you rode out that situation really well, Cathy!

Though it's never a good idea to extrapolate from one observation, my two tentative takeaways from your experience are: (1) do not delay, never mind skip, your replenishment doses of the IVIG (every 2, 3 or 4 weeks, depending) to which your body is accustomed; (2) insist that you be given a dose of IVIG as soon as possible after arrival in the Emergency Room, and persuade your physician ahead of time to be supportive of such an approach -- because chances are the ER is going to call him/her and ask what should be done with you.  Dr. Druey is correct that there isn't much documented evidence that IVIG works when given 24-36 hours into an episode; in fact, I personally witnessed the death of two SCLS patients in their hospitals who had been given IVIG very late, as a last resort ("rescue therapy" as physicians call it). By the same token, I'm not aware of any documented evidence that IVIG does NOT work when given in the first 24 hours into an episode.

thank you, Arturo! I really appreciate the support and very sound advice. I had gotten complacent after good treatment and no episodes in 5 years.

Just for information purposes, I'll share that it wasn't until after I realized I was having an episode that I realized it actually had been going on for at least 72 hours, probably longer. My thighs had been feeling "puffy" since at least the Friday before (definitely Saturday - I mentioned it to someone). Then Sunday night, I scratched an itch on my ankle and noticed it felt swollen. It just didn't dawn on me that I was having an episode until I got in the bath Monday night and saw my very blue and swollen legs. Treatment started Tuesday at 6 pm.

But my typical episodes (before IViG) seemed to have a slow, gradual build-up that lasted something like two weeks before my symptoms got really serious, so maybe the window of time for administering IViG is different in my case.

Good news: Back in 2014, Dr. Druey gave me a kit full of vials -about 13 - to get blood drawn to have sent to him if ever I had an attack, and I was able to have that done and deliver the samples to him. He said it had been difficult to get blood samples from people having an active attack. He hoped to be able to compare to blood taken while NOT having an attack and try to find out what the difference is.

I'm sure you also know Dr. Druey has found a difference in all 10 skin biopsies he's been able to analyze from SCLS patients. He says all 10 of them react differently from the "normal" to histamine. I am going in to NIH next month to add a sample to his skin biopsy study.

Another positive to report: the ER at Anne Arundel Medical Center gave me no grief about the treatment. I walked in and told them, "My doctor said to come get an IViG infusion right away", and they said "OK", and did it (after 4 hours of typical ER processing). I'm sure it was so easy for me because I'm in their records at AAMC from the episode that put me in their ICU, which was where I got diagnosed. All in all, I am very blessed and grateful.

It must have been heartbreaking and at least a little frightening to be there as two different people passed on from an SCLS attack. How courageous of you to be there for them....if I'm remembering what I've read in the past correctly, you were friends with them too. You are in my heart and prayers.

thank you,

Cathy