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

Discussion in 'Immunological' started by Gingergrrl, Sep 5, 2016.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I was curious if anyone understands or could explain the mechanism of how IVIG could put my MCAS into remission? I use the word remission versus "cure" b/c I have no idea if this is permanent or temporary. But after two IVIG infusions (with my third very soon), I have absolutely zero symptoms of MCAS. I was able to begin to taper off Cortef and now into the second week of the taper, I can eat any foods that I want, I have no allergic reactions to food, no allergic reactions to smells, no third spacing, etc, and it is truly bizarre and unexpected b/c I am not even close to the autoimmune dose of IVIG.

    I have had some minor and temporary improvements in muscle strength and blood pressure but no improvements yet in my shortness of breath, dysautonomia, or orthostatic intolerance. But the remission of the MCAS is just shocking to me and I wondered if this has happened to anyone else or if it is a freak thing? If anyone has any theories re: why this occurred or if it will be permanent vs. temporary, I am so curious!!! My next IVIG is in less than a week and I increase the dose and am hoping it will lead to additional improvements in my other symptoms.

    Thanks in advance if anyone has any thoughts on this.
     
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  2. AndyPandy

    AndyPandy Making the most of it

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    No ideas as to why but sooooo happy for you!

    :)
     
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  3. justy

    justy Donate Advocate Demonstrate

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    Great news!! Dr Afrin talks about this in his book, but then dismisses it as a treatment as he says it has to be taken forever and is too costly. I don't know how it works though - in fact they don't really know how it works for autoimmune issues (I think). I wonder if @Jonathan Edwards might be able to say something about this?

    For me the low dose SCIG is not enough to affect the MCAS - the ketotifen is helping, but often I react to the SCIG with feeling awful for a few hours after taking it - dizzy, sweaty, low BP etc. I keep up with it though because it helps me function better - without it I am bedbound and with it I can be up and about and do more in the day. My Dr doesn't know why this works for me in this way or the mechanism of action (perhaps it IS helping my MCAS fatigue?), but as it does do something positive we keep on with it.
     
  4. Hip

    Hip Senior Member

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    No clear ideas as to why intravenous immunoglobulin has put your mast cell activation syndrome into remission,... but maybe you have made medical history.

    Although since viral, fungal and bacterial infections can all cause mast cell activation, one could speculate that you may have had some chronic infection underpinning your MCAS, which the IVIG wiped out, or brought under control. But that is just my uneducated guess, as I know next to nothing about MCAS.
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @justy and @Hip and I am going to research this as soon as I am able and will be seeing my mast cell doctor very soon (a few days after IVIG #3) and will ask him what the mechanism is that put this in remission. Last night I went out to dinner with my husband at a regular restaurant and had my food cooked with regular spices including black pepper and even had a piece of sourdough bread and no reactions to anything.

    It is mind-boggling b/c last summer I was having anaphylaxis to all food but water and ended up in hospital on IV Benadryl. Then for about six months all I could eat was lamb, rice and sweet potato taking 6-7 meds pre-food plus Cortef. Then I slowly added low histamine foods to where I had more variety but I still had unpredictable reactions to foods and smells resulting in having to take my rescue med (Atarax) at least 3-4 times a month. But at present it is gone. I know tomorrow it could be back but at present it is gone.

    I am embarrassed to say that I still have not read Dr. Afrin's book! But am curious, since you read it, did Dr. Afrin actually say that IVIG does not work as a treatment for MCAS or did he say that it can work but dismissed it b/c he feels a patient would have to do it forever and b/c it is too costly? No worries if you do not remember. When my doctor consulted with Dr. Afrin re: my case last summer, he (Afrin) felt I might need to have a PICC line with IV Benadryl for the rest of my life and never mentioned IVIG as an option.

    Agreed and no one seems to really know how it works for autoimmune diseases but I suspect it is modulating my immune system back to the center (away from the crazy allergic reactions) and hopefully it is lowering or reducing the level of auto-antibodies. I have not re-tested them yet but plan to in future. The crazy thing is that I am nowhere near the autoimmune dose for my weight which starts around 55 grams minimum. But historically I do better with low doses of things so maybe this is the same thing? I've done two IVIG's at 24 grams and #3 will be 36 grams.

    Have you thought about trying IVIG vs. SCIG or is this not an option in the UK and you'd have to go to Belgium to try it? I don't really have what I would label as "fatigue" and for me the problem is muscle weakness and dyspnea which prevent me from walking. I have noticed an increase in arm strength (while seated) from IVIG and an increase in my very low BP but this lasts for about two weeks and by the third week it is gone. It has not yet improved my autonomic or breathing issues but I never dreamed it would put the MCAS into remission so I am hopeful that as I increase the dose, it will lower the autoantibody and then I will be allowed to try RTX to really wipe out the antibody.

    I doubt I have made medical history but I do wonder how common vs. rare this is?

    Anything is possible and I am certain that toxic mold exposure was the final trigger (but not the only trigger) of my MCAS. I feel that somehow the IVIG has modulated my immune system back to the center and away from the mold reaction, away from viruses, and most crucial, away from the crazy allergic reactions to food. I am still avoiding dyes and preservatives and the absolute highest histamine offenders to be safe but for all I know, even those might be okay now?

    I don't feel that it has yet gotten the dysautonomia or autoantibodies under control which I suspect are weakening my muscles and breathing. If it could do that, it would be a dream come true. Am supposed to see my Neuro after IVIG #3 and if she works in conjunction with my ME/CFS and MCAS docs, am hoping that my insurance will allow me to increase to the higher dose. I really want the opportunity to try the autoimmune dosing in the future.
     
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  6. halcyon

    halcyon Senior Member

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    Afrin has talked about antibodies against IgE receptors possibly being involved in MCAD. Now, can IVIG affect IgE production too? Or are these IgG antibodies that bind to the IgE receptor? I have no idea. But along this line of thinking, it seems totally plausible for there to also be antibodies against some other receptor required for mast cell activation that could in theory cause the same problem.
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    The autoantibody idea seems very plausible to me but I am still confused (and this is debated in my MCAS group) if MCAS is actually an autoimmune disease? If it has autoantibodies then that could be the mechanism in which IVIG put it into remission. But I also wonder if the IVIG served strictly an immune modulator and just shifted my system back toward the middle (without specific autoantibodies for MCAS)?

    I have no idea if the autoantibodies that I do have (calcium channel and GAD65) preceded my MCAS b/c my acute MCAS started in March 2015 and I was not tested for the autoantibodies until a year later. So I may have already had the autoantibodies or they may have developed more recently? I suspect that I already had them and they developed at some point post-mono (most likely in 2013 when I developed POTS). Although I really have no idea.

    I guess I am asking b/c I want this remission of MCAS to be permanent and to believe it is somehow under my control (but I know it may not be). I was able to eat yogurt again today (so it was not a fluke) plus decaf coffee with a natural brand of flavored creamer with no reaction. I am now wondering, can I eat the highest offenders red tomato, spinach, citrus, strawberries, etc, or even a food dye with no reaction or do I not push it that far and leave things alone?
     
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  8. Groggy Doggy

    Groggy Doggy Senior Member

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  9. Gingergrrl

    Gingergrrl Senior Member

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    I did read that article back when it first came out but had forgotten that it mentioned IVIG as one of her treatments and that it allowed her to cut her medications by like 50%! Thanks for reminding me of that and I also read the link that was part of the article.

    Several people have sent me links re: IVIG today and they are really helpful and all really appreciated. I am still not sure what is the mechanism in MCAS but am pretty certain if I stopped the IVIG, that this remission would be over. But my next IVIG is in five days and am hoping to do them for as long as humanly possible. I think there are many more benefits that have not even started yet b/c I am not at a high enough dose.
     
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  10. Groggy Doggy

    Groggy Doggy Senior Member

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    If you can get to the point where you are comfortable (and safe) doing the IVIG treatments at home, then wouldn't the insurance company cover the cost?
     
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  11. frog_in_the_fog

    frog_in_the_fog Test Subject

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  12. Gingergrrl

    Gingergrrl Senior Member

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    No, it would always be limited b/c the IVIG itself is so expensive and they often call it "liquid gold".

    Home health would reduce the cost but is too risky for me b/c I could be allergic to any batch of IVIG b/c different donors. I'd need to have a nurse who could immediately put IV Benadryl or Epi into the IV and with home health, the nurse sets you up and leaves and comes back six hours later.

    In spite of this remission to food and smells/odors, I would never risk IVIG or RTX outside of an infusion center. I am willing to take big risks but need to do them in the safest way possible.
     
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  13. justy

    justy Donate Advocate Demonstrate

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    Dr Afrin said it DOES often work but is too expensive so he doesn't use it. I think that's silly because if it works - why not? Im actually moving house now so cant look it up in the book - but you could look in the index to see where he mentions it - its towards the end of the book somewhere.

    I was originally supposed to do IVIG - but it means travelling to another country once a month and im not well enough for that so we went with the low dose scig. Not sure it would be a good idea for me anyway as I had a severe HERX reaction after upping the SCIG dose - I am riddled with infections it seems and I can only take a low dose so that I don't herx again. Also I cant take steroids to cover reactions as a pre med as I react to steroids...am hoping to maybe push the scig dose higher - but then its the cost if I take a lot I obviously pay a lot more.
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    Interesting and I also wonder why he would not consider a treatment that could potentially work b/c it is expensive. Sometimes you can get insurance to cover it (at least to try it for a few infusions) or travel somewhere else to get it like you mentioned, or trying lower dose SCIG.

    I think remission is even too strong of a word in my case b/c in the two months that I've had IVIG (July and Aug with 3rd one in four days) I did react to a food back in July that I did not know had two preservatives and to a food with careeganen (which comes from seaweed which I have always been allergic to). But these were isolated incidents and I have not had any reactions to all of the new foods I've added (20-30 things) plus no reaction to eating without the pre-meds. But I know I have to be careful and am on shaky ground here. I am going to continue avoiding all dyes, preservatives, and fillers/thickeners like careeganen that I know/suspect I am allergic to.

    Please don't search for the book and I was only curious if you had remembered from memory what he'd said. I will definitely look in the index.

    I couldn't remember if someone could get IVIG in the UK or had to travel outside to other countries to get it.

    I have to take the steroid and other pre-meds to avoid potential anaphylaxis to the IVIG (and would do the same if I were to ever try SCIG). I was going to ask if your insurance would cover any part of it (and realize how stupid that question is) but if you had private supplemental insurance in the UK (which I think exists?), would it ever cover it, or would it still never be covered?

    Mine has authorized six infusions but for a certain number of units/grams per dose. Since we are increasing the dose, it pulls the units away from future infusions so I will end up with less than six. Not sure what happens at that point but my Neuro had said she'd help me if I got an improvement from three infusions, and I've already gotten an improvement from just two. Granted the improvement is in my mast cell disease (not in the muscle weakness or breathing/walking) but it is still a huge improvement and hoping this is enough for her to remain on my side b/c at some point if I want the higher dosing, insurance will want the request from a Neuro. But am trying to take one day at a time.

    Thanks again for all your feedback and support.
     
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  15. justy

    justy Donate Advocate Demonstrate

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    I don't have any extra private insurance - most people in the UK don't. It costs quite a bit of money and I couldn't get it now as I have too many pre existing conditions. In terms of IVIG private Drs here still go by Govt guidelines or they can have their right toi practice removed. IVIG is like gold here and you can only get it for two or three diseases - CVID PID and Kawasaki disease and Guilain barre - I certainly don't meet the criteria and its so expensive here anyway = much cheaper for me to go and buy it in Europe.
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    It's similar here in the sense that IVIG is also like gold and officially approved for only three conditions (to which insurance cannot say no) and everything else the doctor is going "off label" (especially with the autoimmune dosing) and then it is much harder to get insurance approval.

    I had a combination of multiple medical issues and doctors saying I needed it so it got pushed through but it took me five months (vs. if I'd had one of the approved diagnoses, it would have been straight forward). It's still a fight and no idea if I will get approved beyond this current authorization but hoping I will since am not even at the autoimmune dosing yet.
     
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  17. frog_in_the_fog

    frog_in_the_fog Test Subject

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    The IVIG treatment is more precious than gold if it is working for you @Gingergrrl! We sometimes have a regular war going on at the microscopic level. With each dose of IVIG, it is literally like bringing in another thousand strong peace keeping troop to bring an end to the battle. I hope your side is victorious and a lasting peace is achieved.

    From the wiki that great oracle of knowledge:

     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    That is how I feel as well and as long as it continues working, I will find a way to keep doing it even if my insurance cuts me off. My dream is that it starts to improve my muscle weakness and breathing (in addition to stopping the allergic reactions to food) but no idea if this will happen. I have a pension from my former career, savings, and investments and I will literally spend them all to continue this treatment without hesitation if it continues to help me and will do the same for RTX (although for that one there is a financial aid program that I will apply for which does not exist with IVIG).

    Yes, I love how you worded that, and I do believe I have a war going on at the microscopic level and that each one of us does. The IVIG are the peace keepers and I love that image. Thank you so much and you have really expressed that beautifully and should be a writer (if you are not already)?

    Nothing wrong with Wiki LOL.
     
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  19. frog_in_the_fog

    frog_in_the_fog Test Subject

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    Thanks @Gingergrrl! It is people like you that inspire me and encourage me to fight on.

    I would keep the fight going with the insurance company. They are supposed to be there for you.

    Often healthcare legislation can work for or against you, especially in the area of "off-label" uses of medications. 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.

    Massachusetts Lyme
    Rhode Island Off-label


    Simplified Humorous Explanation of the Immune System​
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    Thank you and that made my day/evening!

    I definitely intend to keep advocating and I realized from last time, part of the fight was just dealing the bureaucracy and disorganization b/c each time I called, it was not getting documented so they would tell me one thing and then tell my doctor's office another thing and then tell the infusion center yet a third thing. I don't think it was malicious but it was maddening to sort out the source of the misinformation and I didn't know until the very last minute if it was all approved.

    I finally asked for a supervisor and for the call to be documented in their computer system and for confirmation of the authorization to be sent to me via e-mail so I had it in writing and they agreed. I have several things working against me besides it being "off label" but am hoping I can still get another auth approved after this one if all three of my doctors remain on board that this is what I need and that I am nowhere near the autoimmune dose that they initially asked for b/c it was safer for me to build up slowly, etc.

    I haven't watched your video yet but it's ironic it has a cut finger on the first slide b/c 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?
     

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