• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Finally started IVIG

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
Update 3:

It seemed that IVIG completely cut the time of my flare in half, but I dont want to jinx anything. My headaches are gone, brain fog/derealization/mental fatigue went from being an absolute 10/10 to more of a 6/10. Muscle pain, bone pain and neuropathy in my legs is seemingly completely gone for now. Visual snow is still here and I'm honestly wondering if its permanent damage from the NNDA antibodies.

Although I am feeling better in terms of my regular disease process, for whatever reason, I'm one of the unlucky people when it comes to tolerating IVIG as I developed aseptic meningitis AND a pulmonary embolism that I have had to spend 3 days in the ER for. Lucky me lol
 

Gingergrrl

Senior Member
Messages
16,171
I'm one of the unlucky people when it comes to tolerating IVIG as I developed aseptic meningitis AND a pulmonary embolism that I have had to spend 3 days in the ER for. Lucky me lol

OMG @crypt0cu1t, you ended up with aseptic meningitis and a pulmonary embolism from IVIG?! I am so sorry to hear that (even though you have had some other improvements which is great news).

Have you been tested for anti-phospholipid (Hughes) syndrome prior to starting IVIG to make sure that you are not a blood clot (embolism) risk? I did this panel prior to starting IVIG to make sure it was negative (and not sure what would have happened if it had been positive)?

Also, this tells me that you greatly need to slow down the infusion speed. I think you had done 60 grams in 4 hours (is that right or am I mis-remembering)? I was doing 27.3 grams in 7-8 hours (for a 3-day cycle totaling 82 grams) which is insanely slow but maybe you can find some middle ground with your doctor? If you have to do 60 grams per day, can you do it over 8-10 hours?

I hope you are feeling better soon. And please talk to Dr. C about slowing down the infusion speed :hug:
 

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
Hey everyone, I know I havent posted an update in a really longtime, but that was because I first got really sick from IVIG with Esophageal ulcers and Hemolytic anemia for 3 weeks that put me in the hospital...

The strange thing is after those 3 weeks, I experienced an insane uptick in health for about 60 days which allowed me to return to work, see friends and live almost normally with no returning symptoms until 2 days ago when I started going downhill again.

I can now feel my health slowly declining as I spend more time in bed and feel my "encephalitis" symptoms returning.

I am working with Dr Chheda to determine where to go from here in terms of trying IVIG one more time or trying rituximab, but I'm terrified of both..
 

frozenborderline

Senior Member
Messages
4,405
Hey everyone, I know I havent posted an update in a really longtime, but that was because I first got really sick from IVIG with Esophageal ulcers and Hemolytic anemia for 3 weeks that put me in the hospital...

The strange thing is after those 3 weeks, I experienced an insane uptick in health for about 60 days which allowed me to return to work, see friends and live almost normally with no returning symptoms until 2 days ago when I started going downhill again.

I can now feel my health slowly declining as I spend more time in bed and feel my "encephalitis" symptoms returning.

I am working with Dr Chheda to determine where to go from here in terms of trying IVIG one more time or trying rituximab, but I'm terrified of both..
Is dr chheda good ? My friend in La is going to see her in April
 

StarChild56

Senior Member
Messages
1,405
Hey everyone, I know I havent posted an update in a really longtime, but that was because I first got really sick from IVIG with Esophageal ulcers and Hemolytic anemia for 3 weeks that put me in the hospital...

The strange thing is after those 3 weeks, I experienced an insane uptick in health for about 60 days which allowed me to return to work, see friends and live almost normally with no returning symptoms until 2 days ago when I started going downhill again.

I can now feel my health slowly declining as I spend more time in bed and feel my "encephalitis" symptoms returning.

I am working with Dr Chheda to determine where to go from here in terms of trying IVIG one more time or trying rituximab, but I'm terrified of both..

I'm so sorry...I know this must be so hard and I will keep you in my thoughts and prayers. I know you are in the best of hands and working through all the problem areas while difficult, will be bringing you that much closer to the solution/solutions to get you feeling much better and sustaining it. I think of it like a large jigsaw puzzle and keep getting more of the pieces in place...I find that helps me sometimes when I am overwhelmed.
 

wigglethemouse

Senior Member
Messages
776
Saw your post on Whitneys thread. It seems like you have also been diagnosed with Myasthenia Gravis due to having AChR Antibodies. Did Mestinon provide much improvement?

Was wondering if you figured out how to proceed after your IVIG issues?
 

Gingergrrl

Senior Member
Messages
16,171
Saw your post on Whitneys thread.

I saw that as well and am thrilled for you @crypt0cu1t with all your improvements! This is amazing news.

It seems like you have also been diagnosed with Myasthenia Gravis due to having AChR Antibodies.

I was curious, too. Were you officially diagnosed with MG or LEMS (or something else?) or do they feel you have the autoantibodies causing symptoms but do not meet the full diagnostic criteria?

Was wondering if you figured out how to proceed after your IVIG issues?

I was curious about this as well. Will you be continuing with high dose IVIG or adding other treatments?
 

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
Saw your post on Whitneys thread. It seems like you have also been diagnosed with Myasthenia Gravis due to having AChR Antibodies. Did Mestinon provide much improvement?

Was wondering if you figured out how to proceed after your IVIG issues?
I don't have MG. I have the matching antibodies but I dont really meet the criteria for it. I think that I just have a bunch if random autoantibodies causing tons of issues but I dont really fit under one diagnosis.
 

Gingergrrl

Senior Member
Messages
16,171
I don't have MG. I have the matching antibodies but I dont really meet the criteria for it. I think that I just have a bunch if random autoantibodies causing tons of issues but I dont really fit under one diagnosis.

We'll have to chat further again b/c I am in a very similar situation in that I have a bunch of random autoantibodies causing a ton of issues (prior to IVIG and Ritux) but I do not meet full criteria for the main diagnosis that they match with (LEMS). I have the LEMS autoantibody and meet partial criteria but was negative on the EMG and never had the degree of leg weakness that most with LEMS have (vs. I had severe upper body weakness in my neck, arms, lungs, diaphragm, etc).

It is all gone now from my treatments but my main doctor does not know if it will all return if we allow my B-cells to grow back (which we are not doing right now and are keeping them at zero with maintenance infusions of Rituximab). I understand my other diagnoses (like Hashimoto's where I met 100% full criteria including bloodwork, autoantibodies, and symptoms) and I also met full criteria for POTS and MCAS.

But the LEMS (similar to MG for you) is what remains unclear to me. I have the calcium channel autoantibody (and it has never gone down, even with treatment) like you have the AChR autoantibody. But from your last post, you do not have MG, and yet your response to IVIG was miraculous like mine. There is this autoimmune group of us that are sort of in "No-mans land". On the one hand, to be a responder to treatment is all that matters, but on the other hand it would be nice to have a crystal clear label and to know what will happen to us if and when these treatments stop?
 

Gingergrrl

Senior Member
Messages
16,171
If you don't mind @Gingergrrl may I ask how soon after starting IVIG you noticed improvement? I know you've told your story plenty of times, but I can't remember how quick it was. I seem to remember you had an issue at the start and had to visit the hospital opposite from Dr. K?

You have a good memory and I did end up going to the ER about ten days after my first IVIG infusion (in July 2016) because it was infused WAY too fast. My doctor had written that the infusion speed could not go above 35 and could not be done faster than eight hours (for the first infusion) but the nurse completely ignored his instructions and did the whole infusion in 3 hours.

I ended up getting a (delayed) IVIG headache and intracranial pressure and after ten days, I couldn't tolerate it any longer and my ex-husband took me to the ER. Except it was the ER at the same hospital where my MCAS doctor practices and where my infusion center is located. You are correct that I was hospitalized in May 2015 (over a year prior to starting IVIG) at the hospital that is opposite from Dr. K but that was for anaphylaxis and to try to get my MCAS reactions under control after being unable to eat food for several weeks (and had nothing whatsoever to do with IVIG).

When I went to the ER in 2016 b/c of the IVIG headache, we wanted to make sure that I did not have aseptic meningitis and to also stop the headache. Headache is the #1 side effect from IVIG but it is usually more minor and lasts 3-4 days. This first one was b/c the infusion speed was too fast. I was given Decadron and Fentanyl in the ER to reduce the intracranial pressure.

All future IVIG infusions were done at a MUCH slower speed and the nurses followed my MCAS doctor's orders precisely and I never had that problem again. I hope this helps!

Edited: I forgot your first question which is how soon I noticed improvements. The very first infusion was such a nightmare that I truly cannot even remember the positives?!

But I noticed improvements almost immediately with the rest of the infusions. My MCAS went into remission and has never returned. I was able to tolerate normal food, my reactions to odors and perfumes, etc, disappeared, the anaphylaxis was gone, and I could even eat in restaurants again!

Then other symptoms started to improve including improved muscle strength, especially in my arms so I could open doors, cut food w/a knife, open bottles, open boxes, cut paper with scissors, turn on the shower faucets, squeeze shampoo bottles, and things I had not been able to do at all.

But the debilitating shortness of breath/breathing weakness and POTS did not significantly improve until we added Rituximab. And I did not walk without wheelchair or drive my car until after about nine months on Rituximab. Now all of that is in remission and I have been able to do PT and continue to strengthen my muscles. But the MCAS went into remission from IVIG alone before the Ritux was ever added.
 
Last edited: