can IGG make one more sensitive to things?

[cb2]

I just had second infusion of Sub cutaneous IGG, yesterday. Today I felt my lungs, nose and eyes being reactive to somethings in the air that I am not usually as reactive too.

does this mean it could be MCAS? what are tests for that? will the immunologist I see know what to do about this?
have others had any similar reactions? thank you

 

[Learner1]

IVIG flares up my mast cells. I would hate SCIG as I'd be fighting the symptoms all the time.

To cope with the IVIG, I get Solumedrol or dexamethasone and Benadryl, take cromolyn sodium, ketotifen, quercetin and curcumin, which all help calm my mast cells down. My symptoms last 3-4 days, then I'm fine until the next infusion

 

[cb2]

I tried Iv igg last summer and had too many side effects. today (48 hours since infusion) i am alot less reactive. thank goodness. Maybe it was a fleeting side effect. or maybe it was / is the chemical sensitivity.. had some water damage mold issues in my closet and my apartment has been a mess since .. and the issue isnt' wholly resolved..at least according to me. but the owners say it is. I did get some exposure to some wood finsih on a little project i started and as strong paint..as part of an attmept to get closet back to some workable order.

today i decided to do nothing day. it has been a hectic and stressful few months where i live. need to let my nerves calm down.
i may ask the immunologist on tuesday about MCAS and see what he says.

thanks for the tips on what to take that might help.. I did use the benedryl (makes me sleepy) and turmeric and i even tried the quercetin but maybe it needs to build up in the system for a while?

 

[Learner1]

Maybe. Quercetin is a known mast cell stabilizer. I take it every day, so perhaps it's built up to a critical level. I also find boswellia helps with CNS swelling...

 

[Misfit Toy]

I had a rash all over from IGG and also my throat closed up on it but I am a rare bird. I became very reactive to everything. Many do on IGG so you are not alone.

 

[cb2]

thank you . I too had a rash with the IVIGG. so far no rash from the cuvitru, 2 infusions down.

 

[wigglethemouse]

@cb2 I was wondering if you would be willing to share an update - were you able to continue treatment?

In particular I'm wondering how symptoms compare between IVIG and SCIG. I understand that the advantage of SCIG is that the process is weekly, so your body maintains steady levels without the peaks and troughs associated with monthly IVIG.

 

[cb2]

HI @wigglethemouse I have continued on with the Cuvitru sub q every week. I have completed 3 months and going onto the 4th month. The side effects are very minimal for me especially compared to the ivigg. I really like the Cuvitru. the infusion takes about an hour and about 15 mins for me to get it all set up. I do feel tired the day following treatment. I follow up with the Immunologist in Feb I think. I suspect he will run and IGG test.

 

[wigglethemouse]

Thanks for the reply @cb2. Are you getting a high (autoimmune) or low dose treatment?

I'm trying to learn about SCIG and just watched a video. How many sites are required and how many times a week? I saw suggested 5 sites for once a week, and 2-3 sites for twice a week, for auto-immune dose. I'm guessing after the first couple of infusions it starts to become routine????

Thanks again.

 

[cb2]

HI @wigglethemouse I am taking 8 grams a week, not sure if that is for autoimmune? with the cuvitru I use 2 sites. the needles are tiny. the dr prescribed a Emed SGI60 pump, so it has adjustable speed settings. kinda handy.

cuvitru can have a nurse come in for the first 4 visits, or they were at the time but my insurance covered that so the insurance company provided a nurse, it actually took me 5 visits to feel ready to go on my own. now it feels really routine

 

[wigglethemouse]

Thanks for the info @cb2. Is it true to say that you find SCIG much easier than IVIG even though you have to do it yourself?

It all seems so daunting, what with the the risks and everything. But from researching it seems adverse events are less likely with SCIG, so might be the safer route. On top of that it's only 1-2 hours vs all day IVIG, so less chance of PEM. And you avoid the peaks and troughs of associated with monthly IVIG.

 

[cb2]

I guess you can have a nurse come and do the IVIGG for you if that is what you chose. I didn't do well with the IVIGG i had alot of ithcy skin and gi issues. I was later told it may have been the brand of IGG. for that I went to an infusion center and I was alot not feeling well for a few days following the IVIGG and my dose never was able to get above 15 grams. now i am getting a total of 32 grams 8 grams a week. it is much easier . the pharm sends everything i need. i just have to clean the little table i bought to use and like i said the set up is about 15mins. infusion at 70mins now. good luck !