Does anyone understand the mechanism of how IVIG could put MCAS into remission?

[Groggy Doggy]

However, the laws of the land are slowly changing, and new laws forcing health insurance companies to expand coverage of "off-label" use are being proposed and adopted all the time. Enacting a new law can turn into long fight because of lobbying from insurance companies who do no want to pay.

Thanks for posting the cute video! Regarding California, do you know if there are any new laws that will force health insurance to pay for off-label use? Heck, I am still waiting for my health insurance to approve labeled use.

 

[frog_in_the_fog]

Regarding California, do you know if there are any new laws that will force health insurance to pay for off-label use? Heck, I am still waiting for my health insurance to approve labeled use.

Odds are that the more exotic medications are not in your insurance formulary. So your doctor would need to make a treatment authorization request, which your insurance will either approve or deny based on the information provided. It may be necessary to find and submit to your doctor, articles from medical journals citing evidence of the successful treatment of your condition with a particular drug therapy.

California Health insurance policies and health care service plans that cover prescription drugs cannot limit or exclude coverage for the off-label use of a drug, provided the drug:

• Is approved by the FDA;
• Is prescribed for the treatment of a life-threatening condition or a chronic and seriously debilitating condition (provided the drug is medically necessary to treat that condition and the drug is on the insurer’s formulary, if any); and
• Has been recognized for treatment of that condition by the American Hospital Formulary Service’s Drug Information or certain medical compendia.

 

[frog_in_the_fog]

...I accidentally cut my finger very deeply in shower a few hours ago w/razor and it hurt like hell and couldn't get it to stop bleeding. It was so dumb, I can't believe I did that and it never pays off to try to rush. Sorry for that random sidebar but your video made me think of it. I think I bleed/bruise very easily b/c of the MCAS?

Having all those antibodies in you will likely wipe out any bugs that might try to get the better of you.

Poor clotting and easy bruising is found in a lot of MCAS patients due to activation that releases heparin. By itself, it does not typically require treatment. The bleeding is often localized, such as excessive bleeding from a surgical site but clotting correctly elsewhere. Antihistamines typically help, with protamine being reserved for severe cases and transexamic acid and aminocaproic acid being reserved for the most severe.

 

[Gingergrrl]

@frog_in_the_fog thank you for all the additional info. I definitely suspect I get easy bleeding/bruising from MCAS and in past years when I used to go to the dentist they always commented how easily I bleed from the regular cleaning and how hard it was to stop it but I never associated it to my MCAS until now. Haven't gone in two years b/c was too afraid of potential allergic reactions but will eventually go back!

 

[Groggy Doggy]

Odds are that the more exotic medications are not in your insurance formulary. So your doctor would need to make a treatment authorization request, which your insurance will either approve or deny based on the information provided. It may be necessary to find and submit to your doctor, articles from medical journals citing evidence of the successful treatment of your condition with a particular drug therapy.

Thank you for the most helpful health insurance post I have read on PR (for California residents)! Now I have a toll fee number to call to get my questions answered. Information is power...and I need all I can get.

http://www.dmhc.ca.gov/

Gaining access to insurance benefits (disability, health) is my number one source of stress. It's horrible enough to live with ME, but the small amount of fluid cognitive energy I have each day should be spent on taking care of myself. So I have to continually keep sacrificing my health in order to get my insurance to pay for my benefits. "Health Care" in the US is an oxymoron!

 

[Gingergrrl]

I wanted to update that my allergic reactions are no longer under control and definitely not in remission but the odd thing is that most recent episode was not triggered by food.

We went to a "Back to School Night" last night at my dtr's school which was about 4 hrs long. I did very well b/c seated entire time and was really enjoying it until I went to restroom had trouble opening the door and getting my portable wheelchair out of the stall and ended up with severe dyspnea and angina. I had not eaten dinner so no food was involved but sometimes the chest pain reactions must release histamine for me.

Plus lots of parents were wearing perfume and lots of smells plus someone broke a mirror (long story) which scared the crap out of me right after I was having the angina episode. When I get an exaggerated startle reflex this also tends to trigger histamine release for me.

So everything combined, my throat swelled up and got itchy and I got angiodema on roof of mouth with lesions, etc. the odd thing is that absolutely zero food was involved and food had been my #1 trigger. Now it feels a bit more out of control if exertion/angina episodes or being startled can trigger this.

I also read yesterday how the anti GAD65 Ab (which I have) can correlate with "Stiff Person Syndrome" (which I don't have) but often starts with these exaggerated startle responses (which I do have).

I also am noticing that the benefits of IVIG (increased muscle strength to open a door or lift a plate from table etc) plus the increased BP, and even stopping the massive blood pooling in my feet, all last about two weeks and by third week have greatly faded so this must include the allergic reactions too.

But my insurance will never agree to a two week interval (vs. three week) in addition to trying to increase to the autoimmune dose. So am taking one battle at a time and my next IVIG is this Sat at the 36 grams and will see how it goes.

But mostly wanted to post that I used the word remission way too prematurely and now feel like an idiot, fraud or mostly like a failure. I am actually tolerating food better so that is still a big plus but last night I realized I am still an anaphylaxis risk and still not strong enough to go to restroom at a public place without assistance which is such a bummer.

 

[HopefullySoon]

I wanted to update that my allergic reactions are no longer under control and definitely not in remission but the odd thing is that most recent episode was not triggered by food.

We went to a "Back to School Night" last night at my dtr's school which was about 4 hrs long. I did very well b/c seated entire time and was really enjoying it until I went to restroom had trouble opening the door and getting my portable wheelchair out of the stall and ended up with severe dyspnea and angina. I had not eaten dinner so no food was involved but sometimes the chest pain reactions must release histamine for me.

Plus lots of parents were wearing perfume and lots of smells plus someone broke a mirror (long story) which scared the crap out of me right after I was having the angina episode. When I get an exaggerated startle reflex this also tends to trigger histamine release for me.

So everything combined, my throat swelled up and got itchy and I got angiodema on roof of mouth with lesions, etc. the odd thing is that absolutely zero food was involved and food had been my #1 trigger. Now it feels a bit more out of control if exertion/angina episodes or being startled can trigger this.

I also read yesterday how the anti GAD65 Ab (which I have) can correlate with "Stiff Person Syndrome" (which I don't have) but often starts with these exaggerated startle responses (which I do have).

I also am noticing that the benefits of IVIG (increased muscle strength to open a door or lift a plate from table etc) plus the increased BP, and even stopping the massive blood pooling in my feet, all last about two weeks and by third week have greatly faded so this must include the allergic reactions too.

But my insurance will never agree to a two week interval (vs. three week) in addition to trying to increase to the autoimmune dose. So am taking one battle at a time and my next IVIG is this Sat at the 36 grams and will see how it goes.

But mostly wanted to post that I used the word remission way too prematurely and now feel like an idiot, fraud or mostly like a failure. I am actually tolerating food better so that is still a big plus but last night I realized I am still an anaphylaxis risk and still not strong enough to go to restroom at a public place without assistance which is such a bummer.

I know it has been a few years, but was wondering if you are still experiencing a reduction of MCAS symptoms (especially related to food)? I have MCAS and a number of other diagnoses, including an IgG subclass deficiency, and low IgE, IgA, and IgG. It’s so odd that I still have reactions everyday given my low IgE levels - I must be using it all up.
I’m hoping and praying that you are doing even better and that the improvements you notice are here to stay.

 

[Mary]

Bumping to top of the queue

 

[Gingergrrl]

I know it has been a few years, but was wondering if you are still experiencing a reduction of MCAS symptoms (especially related to food)? I have MCAS and a number of other diagnoses, including an IgG subclass deficiency, and low IgE, IgA, and IgG. It’s so odd that I still have reactions everyday given my low IgE levels - I must be using it all up. I’m hoping and praying that you are doing even better and that the improvements you notice are here to stay.

I apologize that I'm not able to re-read this thread right now but wanted to reply. Whatever I wrote in here was over two years ago and toward the beginning of my IVIG treatment (and long before I did Ritux). I have a long thread about my entire experience w/IVIG & Ritux which probably answers everything there and I will try to link to it tomorrow (and please remind me if I forget). I have family over tonight and will not be back on here until tomorrow and can answer more thoroughly at that time.

My MCAS is completely in remission and ultimately everything went into remission (POTS, my severe breathing and muscle weakness, etc) but those took longer. I have no limitations with food but continue to avoid FD&C and AZO dyes although some day I will safely attempt to test them. As of May 2018, I no longer had to use the wheelchair and can walk and drive again (after approx 3.5 years of not being able to walk/drive). Sorry again this is so rushed! Best wishes to you.

 

[HopefullySoon]

I apologize that I'm not able to re-read this thread right now but wanted to reply. Whatever I wrote in here was over two years ago and toward the beginning of my IVIG treatment (and long before I did Ritux). I have a long thread about my entire experience w/IVIG & Ritux which probably answers everything there and I will try to link to it tomorrow (and please remind me if I forget). I have family over tonight and will not be back on here until tomorrow and can answer more thoroughly at that time.

My MCAS is completely in remission and ultimately everything went into remission (POTS, my severe breathing and muscle weakness, etc) but those took longer. I have no limitations with food but continue to avoid FD&C and AZO dyes although some day I will safely attempt to test them. As of May 2018, I no longer had to use the wheelchair and can walk and drive again (after approx 3.5 years of not being able to walk/drive). Sorry again this is so rushed! Best wishes to you.

Thank you so much!! I will look for your other posts. I’m thrilled for you and pray continued blessings on your health and healing. God bless!

I know we’re all different, but your progress gives me a good deal of hope. I’m down to just a few foods and am still very reactive despite loads of meds.

 

[fredam7]

I don't know if I'm using the board wrong or my post was deleted . I'm trying one more time.
I'm starting IVIg , I have a lot going on like everyone else here but large and small fiber neuropathy and a mast cell disorder . I wanted to ask how long it took IVIg to work ? I have some concerning blood work and am not too sure I'm going to be able to handle IVIg . But things are so bad that whatever the risk is, I have to take it.

Were you exposed to black mold ? Did all your symptoms resolve? What I'm really curious about are the symptoms because I've read exaggerations and reading your posts , I can tell you had a lot of harsh symptoms so maybe IVIg might help me too . I feel very drugged and confused , a lot . It's not brain fog , I feel all out drunk or drugged and it feels very bad . I have horrible anxiety to the point it's terror . Anything I eat , I get very ill so I don't know what my "triggers" are , they seem to be all food, smells, sounds, products , it's like I'm missing an immune system and skin and I don't understand it. I had none of these symptoms before . No , I don't recall strange allergies as a child or any of that the dr's try to convince you of . I was perfectly normal and I thInk black mold and being blasted with radiation did something terrible to my body. I keep declIning, it's like I have copd but how? I have dermatographia. I had no food allergies in my life but all food does horrible things . I have constant tinnitus . My neck is very rigid and painful GI issues are severe. Iron levels make no sense , it trends downwards from 90, 70, 50 then it's a 150 and my saturation is like i am absorbing too much iron but my ferritin is depleted . Rbc is low .

Anything you can share would be appreciated and I'm sorry if I'm not using the board correctly . I have severe cognitive issues and I'm new here and I can't even remember to hit post , my 5th try ...

 

[CristianSerious]

Are you still in remission from the IVIG ?

 

[datadragon]

Sounds like IVIG has the ability to lower mast cell activation. ​

IVIG activates FcγRIIB-SHIP1-PIP3 Pathway to stabilize mast cells and suppress inflammation. The mast cell activation is negatively regulated by an inhibitory IgG-receptor. It’s signals are mediated by SHIP (Src homology 2-containing inositol 5′ phosphatase), in particular SHIP1, which activation leads to hydrolyzation of PIP3 (Phosphatidylinositol (3,4,5)-trisphosphate (PtdIns(3,4,5)P3, leading to the inhibition of calcium mobilization and to the attenuation of mast cell activation https://www.nature.com/articles/s41598-017-15455-w​

 

[Rufous McKinney]

IVIG has the ability to lower mast cell activation.

reading: if a patients gets 4-5 treatments per month, that might cost around $41,700 per month.

Translated: my insurer will never cover these treatments

 

[datadragon]

reading: if a patients gets 4-5 treatments per month, that might cost around $41,700 per month.

Translated: my insurer will never cover these treatments

Hi Rufous, that was just in response to try to answer the original topic question:

Does anyone understand the mechanism of how IVIG could put MCAS into remission?​

It isnt saying that this is the sole option for potential treatment of Mast Cell Activation, or even a treatment I would think that is normally a main option. Other treatments for Mast Cell Activation can be considered,

 

[Rufous McKinney]

in response to try to answer the original topic question:

understood..,.I just oddly decided to check the price.