Cost of IVIG

justy

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@Gingergrrl - That is all so fantastic and no not TMI. In a way what you describe is similar to the effects I get from very low dose SCIG. without it I have far less energy and am almost bedbound so im stiking with it for now too.

IVIG is also very expensive in the UK - but you can only get it on the NHS if you have primary immune deficiency. I dont fulfil the need for it here and anyway PWME dont get any real medical help in the UK so I get it prescribed by a Dr I pay to see in Europe. He prescribes it then I buy it over there and bring it home - it is not that expensive to buy in that country for lower doses.
 

Gingergrrl

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@Gingergrrl - That is all so fantastic and no not TMI. In a way what you describe is similar to the effects I get from very low dose SCIG. without it I have far less energy and am almost bedbound so im stiking with it for now too.
Thanks for reassuring me not TMI and I always try to be really honest on here in case it helps someone else down the line. Am so glad that you get a benefit from it, too. I have had experiences though where I initially get a benefit from something and then the second or third attempt does not have the benefit but am hoping in this case, that as I increase the dose (and slow the infusion speed) that the benefit increases. There are objective measures that I will eventually use but this is after 3-4 doses at the higher rate.

IVIG is also very expensive in the UK - but you can only get it on the NHS if you have primary immune deficiency. I dont fulfil the need for it here and anyway PWME dont get any real medical help in the UK so I get it prescribed by a Dr I pay to see in Europe. He prescribes it then I buy it over there and bring it home - it is not that expensive to buy in that country for lower doses.
IVIG is only officially approved for three primary immune deficiency diagnoses and I do not meet those criteria either. So we are doing it for autoimmune reasons which make it a lot more challenging to get insurance approval but we did it. I don't think you can just buy it here on your own (like you describe in Europe) but even if you could, I would still require an infusion nurse to insert the IV in my arm, pre-meds, and supervision and would never be qualified to administer it to myself. I think SCIG is very different from what I am reading.
 
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Gingergrrl

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@justy and all, I wanted to add another example to see what you think. For over a year, I have had these two small plastic containers that I prepare my medicines in and they have a top and bottom but I have never had the arm strength to open and close them on my own (they sort of snap apart but my mom, husband, friend, etc, can very easily do this.) Today was the first time I have ever been able to snap the container apart on my own. It seems like too many coincidences if not related to the IVIG. I would try and try to separate this container on my own until I would get chest pain and today I just snapped it together with minimal effort. Can IVIG do this (increase your muscle strength) in one single dose?
 

Gingergrrl

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Thanks @justy and @daisybell and hoping the IVIG has started to affect the autoantibodies but really no idea if one dose can do this?

Often for autoimmunity dosing, patients start with a "loading dose" of IVIG for 3-5 consecutive days in a row but we all knew I would not tolerate this so starting very low and each dose is three weeks apart.

I think my main doc expected even the first dose to be too high (24 grams) and had initially thought we might have to start even lower and my MCAS doc suggested 18 grams but I felt confident the 24 would be okay and it was aside from the initial bad side effects for 2-3 days.

Yesterday I was able to play with my dog on floor for about 30 min (throwing her toys, tug of war, and all her games) without getting short of breath and hadn't been able to do that in 1-2 yrs!

Granted I was lying in floor while playing and the minute I stand up am short of breath but it still felt great to be able to do that. IVIG seems to have increased my arm strength and overall strength as long as in a lying or sitting position. No improvements in standing/walking from one dose but never expected there would be.
 

Santino

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@justy Please would you PM me where in Europe I can buy it. Can I also buy it in high doses in there? I think I have a doctor who would prescribe it to me....
 

justy

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@justy Please would you PM me where in Europe I can buy it. Can I also buy it in high doses in there? I think I have a doctor who would prescribe it to me....
Hi, i used low dose SCIG, - Gammanorm brand. If you have a European prescription you can get it anywhere in Europe - Belgium is cheaper than France.
 

Santino

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Thanks Justy.

Do you know statistics how risky this is for a person with MCAS. I saw the report from gingergrrl and of course I was hopeful but now I found several people with MCAS where it did nothing and some even got worse. Overall I found about 20 who tried it...What is your impression and experience? I also wonder how risky it is. I can only eat 4 foods since 4 years now. I have often moderate to bad QoL. Then I can also have a good week. I can study despite my restricted diet but currently for example I cannot study due to the illness.

I do not want to risk getting any new allergies or diseases and that seemed to have happened to some people who tried IVIG. What is you experience?

Thank you!
 

Learner1

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I have MCAS and have been on IVIG since August, every 3 weeks, with a home infusion service. My MCAS was not as bad as Gingergrrl's, but I also have been on a robust nutrient protocol with folate, B12, B5, and vitamin C which help to reduce MCAS symptoms.

My doctor ordered Solumedrol to be given at the beginning of IVIG sessions, which last about 10 hours. I also get 25-50mg of Benadryl 3 times during the session. And I take naproxen or ibuprofen for headache pain and dexamethasone for 3 days after.

It did flare my MCAS symptoms, so my doctors had me take fexofenadine (Allegra) 2 days before and 5 days after, and ketotifen, benadryl, double my usual B5 dose for the few days after. And boswellia (frankincense) and large doses of curcumin to manage inflammation. And ondansetron and hemp oil for nausea.

These get me through the symptoms doing pretty well, then I go back to my usual routine, and off all the meds.

Also, the home infusion service I use has assigned a the same nurse and pharmacist, who follow my case and help me as I need it. The pharmacist as switched my IVIG brand to reduce my symptoms and has communicated with my doctors office about increasing support meds. My nurse is very professional, monitors me closely, and doses the meds as he sees I need them, within the doctor's orders and is available by text or phone afterwards if I have concerns.

I also have my primary doctor, my ME/CFS doctor, and a l9cal immunologist to call if I'm in trouble, which has proved helpful in deciding what med to take in what order to manage symptoms.

I feel safe and prefer doing the infusions at home instead if at a hospital or infusion center, as I can be in my bed or on my couch, move around and make meals as I want, and nit be confined to the ubiquitous recliner chair which I've found to be hard on my lower back.
 

Santino

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@Learner1 Thanks very much for your report.

May I ask for what exactly you try to treat with the ivig. It is obvious but also not obvious. Did they figure u have low IGG and u take a dose like 400mg/kg or do they try to treat your MCAS and you take 1-2g/kg? I have no idea about your story of course but this almost reads like the IVIG puts more burden on you than that i helps. Please correct me if I am wrong and it did actually improve you. Do you have food intolerances that are improved by the IVIG and generally what did improve so far? Did you try administering it without the premedication and all the suppression etc?

Thanks very much, such reports are very helpful!
 

Learner1

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@Learner1 Thanks very much for your report.
No problem. I appreciate the help I got from others on complicated issues.
May I ask for what exactly you try to treat with the ivig. It is obvious but also not obvious. Did they figure u have low IGG and u take a dose like 400mg/kg or do they try to treat your MCAS and you take 1-2g/kg? I have no idea about your story of course but this almost reads like the IVIG puts more burden on you than that i helps.
I am on it for both CVID and autoimmune antibodies. I am on a dose of about .78g/kg which is on the lower end of autoimmune dosing and above immunodeficiency dosing. My doctor would like to increase the dose as I tolerate it better and I think I'm ready.

My doctors believe its my body struggling with the autoimmunity that's giving me symptoms. With the meds, my symptoms are very tolerable, they've been nowhere as bad as horror stories I've read. Switching to Gammunex-C helped a lot, too.

Please correct me if I am wrong and it did actually improve you. Do you have food intolerances that are improved by the IVIG and generally what did improve so far? Did you try administering it without the premedication and all the suppression etc?
My POTS has improved by about 30% and my many infections seem to be finally getting under control - my labs have improved greatly. I am celiac and allergic to corn, milk, and eggs, and I'm not very motivated to try any of them due to last reactions. Though I know other patients have had improved food intolerances.

Honestly, I think my nutrient program with boswellia and curcumin is the best for long term management of MCAS. I only need the meds due to the IVIG.
Thanks very much, such reports are very helpful!
You're welcome! I wish you the best of luck!
 

Santino

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UNfortunately, curcumin has been one of my worst triggers for mcas. I read from one person here who improved miraculous her food intolerances. But further I find also the opposite for other patients, e.g. on facebook. Do you habe any insight in statistics for how many patients with MCAS improve from ivig and maybe how many do not or get even worse. On facebook several people state they got worse.

My situation is the following:

only tolerate 4 foods. Dont get a lot of help with my main symptoms from antihistamines. Some worked in a time when my disease was less severe. If I stick to my diet, then i can have very good days but I got e.g. 4x night blind because of vitamin deficciencies. I inject b12, take daily b2 and folic acid in small doses. B5 however is also making me very ill.

I have no idea what to do. I would try ivig if the risk benefit ratio is appropriate for my situation.

Can you work or study in you situation?
 

Gingergrrl

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@Santino I am sorry I was not able to answer your PM but will reply here and hope that is okay. I do not know why but the IVIG put my MCAS into remission 18-19 months ago and it has not returned. I used to take 7-8 pills for MCAS approx 30 min prior to eating food and still had reactions. Since IVIG, I take a total of 4 pills per day just once a day (for MCAS, I still take meds for other conditions).

I no longer need to take them 30 min prior to eating and can eat all foods with no meds. I do however take one set of 4 meds per day (Zyrtec, Ketotefin, Pepcid, and Quercetin) and I also still take Cortef. So the IVIG put my MCAS into remission and allowed me to significantly lower the meds and amount but I still do take some meds and I still do not know what will happen once I completely stop IVIG.

I still have POTS, Hashimoto's Disease, and other conditions but the MCAS is basically gone (and I was having daily anaphylaxis in 2015 until no safe foods were left and I could only drink water and ended up in hospital). I do not know why IVIG was so effective for me re: MCAS but my MCAS doctor said he has had many patients in which IVIG basically cured their MCAS (assuming it was secondary to something else and not primary mastocytosis). However, he does not want me to stop my one set of MCAS meds that I take per day (I take them in the evening now) or try to taper the Cortef again at this time.

I am also doing Rituximab but the remission of MCAS came from the IVIG approx 12 months prior to starting Ritux, so I cannot attribute it to that.
 

Santino

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thanks for the repsonse @Gingergrrl .

Can you maybe let me know who is your doctor? I would maybe approach him. I try to find a doctor who is familiar with MCAS and the use of IVIG. Of course you can send me his name also via PM in case this is private.

How would you say has your quality of life improved through the IVIG? Since food intolerance is my main problem, your report is almost incredible to me. I can only read rice, chicken and flax seed oil and have to eat this twice daily for now 4 years. It would be incredible for me like for your it must have been incredible after being anaphylactic.

However, this is somethings that also differentiates us: I never have been anaphylactic. At least not like the typical reaction. My reaction build up slowly first and only with repeated exposure or large dose I would have a reaction that is similar to anaphylaxis that someone with a classic peanut IgE mediated allergy would get...

Thanks a lot for your report!
 

Gingergrrl

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Can you maybe let me know who is your doctor? I would maybe approach him. I try to find a doctor who is familiar with MCAS and the use of IVIG. Of course you can send me his name also via PM in case this is private.
I will PM you the name of my MCAS doctor but sadly he is no longer taking new patients and I am afraid he may retire within the next year.

How would you say has your quality of life improved through the IVIG? Since food intolerance is my main problem, your report is almost incredible to me. I can only read rice, chicken and flax seed oil and have to eat this twice daily for now 4 years. It would be incredible for me like for your it must have been incredible after being anaphylactic.
In regard to MCAS and allergic reactions to food, my quality of life has improved 100% from IVIG. I cannot explain the mechanism but the IVIG re-set my immune system and modulated it away from the allergic reactions. I had both viral and mold exposure prior to the MCAS becoming acute. I tried every allergy med known to man, mold binders, IV Benadryl for a week in hospital. We literally thought I was going to die of anaphylaxis. I reached the point with the right meds that I was managing the MCAS but it was not a life. The IVIG stopped the food reactions and I can truly eat anything for the last 18+ months with no reactions. The only thing I have not tested is food dyes (I will some day) but for now, I do not feel the risk is worth it. I also do not know what happens when I eventually stop the IVIG.

I have other symptoms (not from MCAS) that still remain, but without question, the combination of high dose IVIG and Rituximab have brought me to my current state which is the best I have been in over four years. My mom is dying of cancer and prior to these treatments, I would not have been able to maintain this pace/stamina to help her and now I can. I have normal muscle strength now and I walked around the hospital without wheelchair today (at a snail's pace) but I did it. But I have to add that I have no idea how any of this pertains to anyone but me.

There seems to be two major subgroups (from my own observations of being on PR since 2014). One is immune deficient (feels "sick", more traditional fatigue/PEM, gets colds, fevers, sore throats, swollen lymph nodes, etc) and one is autoimmune (with positive autoantibody tests, often with MCAS/allergic reactions, often with POTS & Dyautonomia, often with muscle weakness, etc). I have talked to hundreds of people at this point (not just on PR but other medical groups, too) and the responders seem to be in the autoimmune group. None of this is scientific, just my observations like I said.

However, this is somethings that also differentiates us: I never have been anaphylactic. At least not like the typical reaction. My reaction build up slowly first and only with repeated exposure or large dose I would have a reaction that is similar to anaphylaxis that someone with a classic peanut IgE mediated allergy would get...
I have no known IgE allergies vs. my MCAS was so severe in 2015, I was reactive to anything I ate but water. I do not know if this relates to your experience and please talk to your own doctors.
 

Santino

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Hi @Gingergrrl ,

yes it totally relates to my experience. In 2015 I had almost a constant state in between normal and anaphylactic after I was on a ketogenic diet for 4 months. I lost tolerance to all foods. If I eat something I do not tolerate, I get sore throat, cough, sinus congestion, joint pain, my body gets weak and I start sweating in my face+head. If I repeat exposure then I would get anaphylactic more and more with each dose. For some foods this goes within 24h, for others it would take subsequent doses.

The worst case was really NAC. I took it for about 10 days until I suddenly reacted to it and continued taking it because I thought it was from something else. Then I was shortly before calling an ambulance because I was in bed with shivers and cold sweat all over my body...

Although I can only eat 4 foods, I have no single IgE allergy. I have 2 autoimmune skin conditions and always mild positive antinuclear antibodies.

I am sorry that your mum has cancer. I hope she is in good shape and does not suffer too much. I wish you the strength to be there for here. I lost all my granparents because of cancer but 3/4 had good quality of life most of the time and also got old, which was nice for all of us.

Thank you very much for your help!
 

Gingergrrl

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yes it totally relates to my experience. In 2015 I had almost a constant state in between normal and anaphylactic after I was on a ketogenic diet for 4 months. I lost tolerance to all foods.
I have never done a ketogenic diet but when I was in severe shape from MCAS, the diet that was the most helpful was the SIGHI diet from Switzerland. I followed it religiously for about 1.5 yrs. I no longer have to follow it now but it might be worth trying in your case to see if histamine from food is the major issue. You should find it by Google and they have materials in English and a few other languages.

The worst case was really NAC.
My MCAS doctor told me two years ago that I absolutely should NOT take NAC and that it is an MCAS trigger. He was fine with me nebulizing glutathione (at that time) but I was to avoid actual NAC.

I have 2 autoimmune skin conditions and always mild positive antinuclear antibodies.
How high is your ANA and which autoimmune skin conditions do you have? Have you been tested for other autoantibodies?

I am sorry that your mum has cancer. I hope she is in good shape and does not suffer too much.
Thank you and she is very ill in hospital. I have another thread about it and don't want to side-track this one.

Thank you very much for your help!
No problem and I think you asked me some questions via PM that I have not gotten to reply to yet but promise I will soon!