subQ immunoglobulin

[p8d]

Anybody get IVIG subcutaneously?  I have tested positive for a1AR antibodies and UCTD and my neurologist is considering SQIG rather than IV.  We think I also am baroreflex sensitive so she’s checking with Dr Kem (Oklahoma) first.  I have looked at earlier posts but am looking for more up to date experiences.  There’s a nice write up on autoimmunity in POTS and SQIG is mentioned here https://www.healthrising.org/blog/2018/07/27/dysautonomia-international-conference-pt-iv-the-autoimmunity-revolution-in-pots/. Thoughts?

[toomanyproblems]

I've been getting IVIg and it's helped a lot of things, including my dysautonomia. However, I'm getting what I understand to be maximum dose. I considered subQ but I think I get too much. How much in grams and volume are they looking to give you?

[Weary]

I asked my rheum for sub q IG to avoid problems with brain swelling and is generally lower risk. He balked at any IG for a long time, but after I got an EP cardio to say I did have dysautonimia, he said he would order it and start the process of insurance approval. That was at the end of april and its now end of july and have heard nothing. haven't pushed it since i'm still not sure i want to take this drastic step. One thing i worry about is contracting CMV.

but was very interesting that when i first raised that i wanted sub q ig and not ivig first he and everyone else said "impossible" - they had not caught up with the literature I had read. then the next time i asked, he had said first dose by IV in the hospiutal outpatient, and then if ok can switch to sub q - so there was progress.  then finally, this last time, he said yes to all sub q as if it was the most obvious thing in the world- so they finally caught up with the literature i had known about  for years about its effectiveness and safety.

the doses are lower, but the studies seem to show its effective for AI stuff as well as immunodeficiency. if the dose is not high enuf to turn off your own immune system, you can always try other options. if you are consideing IG, i would def recommend trying sub q as it is much safter.

oh, and most annoying, my neuro sent some message telling me that its the safer option, not realizing that i was the one that brought it about. not sure why i hate it when I don't get credit... but i do.

now questions for you:

1- can you please tell me more about that autoantibody? I have never been tested for that and don't think i recognize the acroynm. i  have had a neural antibody panel but don't think that was o it (?). Would love to hear more. Who ordered it too- neuro. do you know if these tests require better handling of blood samples? i alwasy am concerned that using a busy satellite lab, blood has to make several stops before it gets to where its analyzed and i don't know how careful they are to spin in when theyre supposed to etc.

2. also, have you tried a bunch of other therapies first? and those havent' worked? \

thanks

[Runnersmom]

Yes, my son started SubQ a year ago. The immunologist felt that SubQ was better for POTS patients and it has been easy to administer from home. He is better able to exercise and has less dizziness. Also, he has never had a headache from it.  However, his fatigue has not improved.

[p8d]

@Weary my understanding is that the antibody is to the receptor that tells the peripheral blood vessels to constrict.  It’s an alpha a1 I believe.   Makes sense. But I am no Dr so...  I had to send my blood serum to Germany to a company called Celltrend for the test.  There are several antibodies to alpha, beta and muscarinic that Dr Kem associated with POTS that they test for.  They are the only commercial lab in the world that does these tests.  No Dr order required but I paid ~$500 for it plus shipping which was a nightmare.  PM me if you want to know more about that.  My neurologist and cardiologist suggested that I have it done and reviewed the results and are suggesting SQIG.  Finding a lab to do the draw and give me back the tubes to ship was another hassle but perseverance works.  I am 100% refractory to other treatments which I suspect plays into the decision to try it.  

 

@toomanyproblems they would start me at very low doses because I am extremely sensitive to most meds.  I first have to decide if I want to do it if Dr Kem thinks it may help with baroreflex issues.  How has it helped you?  BP/HR/ pain/fatigue/ temp regulation?  

 

@Runnersmomthanks for the input.  Most of that is very positive.  I would dearly love anything that helps with the fatigue and insomnia.  We are worried about headaches so thanks, that’s very good to hear.

[Weary]

Ah, the tests are from CellTrend. Thanks. yes, I know the company. Am familiar with their offerings, but didn't recognize the acronym. I have thought about it; was also intersted in their tests of auto antibodies s to andrenergic receptors. One thing i wasn't sure of is that since they are the only lab that does them is there really isn't any validation. Was curious if everyone who sends blood ends up with something or other that is positive. That was one of my hesistations.

Also wondered on the quality of the samples they will receive and if they even care about that. My recollection is that really  you want to spin the blood down to serum as quickly as possible and then send the chilled (frozen??) serum- don't remember. And i believe their first choice is to have serum mailed - but they say theyll also take whole blood it memory serves correctly.  I'm not sure this makes sense to me - either the tests can or cannot be run reliably on whole blood shipped long distances, but its not clear which. I think i mentioned elswhere i've gotten results from other places, like some ARUP cytoikine results, that suggest my sample just did not make it there in optimal state.

yes, am familar with the hassle of finding someone willing to hand you blood! if in the US, this varies state by state and of course practice by practice. Has been a big issue for me in the last two years and have been unable to get this (used to be able to just fine) - but just recently with a new designer doc i'm trying, i think this will be just fine - though can't get it spun into serum since the doc office does not analyze their own blood.

Will be most interested to hear how youdo with the sub q IG if you decide to do it.

And kudos to your docs who pursued it. you have much more flexible neuros and cardios than I do for sure.

[toomanyproblems]

10 hours ago, p8d said:

 @toomanyproblems they would start me at very low doses because I am extremely sensitive to most meds.  I first have to decide if I want to do it if Dr Kem thinks it may help with baroreflex issues.  How has it helped you?  BP/HR/ pain/fatigue/ temp regulation?  

Hi,

You may know that immunoglobulin isn't a medicine per se but a blood product from donation by others. Many times they want to do a loading dose that is higher than subsequent doses. This is the way I did it.

I had some improvements in other conditions but not my dysautonomia symptoms until I'd completed four set of infusions. The most profound thing they helped with WRT my POTS is the dizziness.  My heart rate still goes up dramatically like it did but I can walk around and drive. I can still get dizzy if I do a lot but it's 95% better. I also no longer (at least until it wears off) have bradycardia. My resting pulse was in the 50s and often my HR was in the 40s and even high 30s. This is even while my HR would jump 100 bpm when I stood up. My resting pulse went up to the low 70s after the IVIg when I noticed I wasn't as dizzy and has stayed above 65 most days. I'm not sure this is key but I'll find out since insurance will not pay for the infusions and I'm sure the good effects will wear off in time.

 A related problem I have is gastroparesis. I was on liquids only for two years after my diagnosis and have for years had increasing numbers of food intolerances. Now I can eat real food again and my food intolerances are much less. I can't tell you how much it has meant to me to be able to eat again even if only for a while. I've had some improvements in other autoimmune problems I have as well. I have had some pretty bad adverse reactions too but they were worth it.  

[p8d]

Thanks @toomanyproblems.  It’s good to hear others experiences.

[andybonse]

I also had the celltrend tests and am positive for 6 out of 11. AT1R is one of them, so I'm also pushing for IVIG or SCIG in the UK. Gonna be hard but we will see! What were your results? Mine was 60 so was really positive.