How I found the underlying cause of my CFS--anti NMDA antibodies

[pibee]

I actually have b/c when my IVIG was a 3-day cycle, I paid for three days at the infusion center (although I assume the dose of the IVIG was also a factor). But if I could have tolerated it in two days vs. three, it would have been much cheaper.

Well for 3 days and 140 grams dose, or 3 days 70 grams, definitely wont be the same price. In China probably hospital bills , other than drug cost, are not as high as in USA. I just assume.

 

[SK2018]

Well for 3 days and 140 grams dose, or 3 days 70 grams, definitely wont be the same price. In China probably hospital bills , other than drug cost, are not as high as in USA. I just assume.

Far far cheaper that's for sure..

 

[Seadragon]

@Gingergrrl Can you post a link detailing the autoantibodies you tested positive for if and when you feel up to it? I have searched some of your old posts but could not find details.

Am very interested as I have positive ANA and RF (but no arthritis) and positive ASMA (but not Autoimmune Hep) and high sed rate off and on. I have some autoimmune signs and symptoms also. Might be helpful for @crypt0cu1t too

Did any of you guys that have the autoimmune signs/positive markers and who respond to Ritux/steroids etc have mood changes or mood swings that fluctuate with your symptoms?

Interested in @Shawn update also.

Thanks Bunchy x

 

[crypt0cu1t]

@Gingergrrl Can you post a link detailing the autoantibodies you tested positive for if and when you feel up to it? I have searched some of your old posts but could not find details.

Am very interested as I have positive ANA and RF (but no arthritis) and positive ASMA (but not Autoimmune Hep) and high sed rate off and on. I have some autoimmune signs and symptoms also. Might be helpful for @crypt0cu1t too

Did any of you guys that have the autoimmune signs/positive markers and who respond to Ritux/steroids etc have mood changes or mood swings that fluctuate with your symptoms?

Interested in @Shawn update also.

Thanks Bunchy x

Since you have signs of autoimmunity. Have you ever been able to try steroids to see if it helps?

 

[Gingergrrl]

Well for 3 days and 140 grams dose, or 3 days 70 grams, definitely wont be the same price. In China probably hospital bills , other than drug cost, are not as high as in USA. I just assume.

There are many factors involved in the cost in the US that it sounds like do not pertain to China. When you get IVIG at an infusion center that is affiliated with a hospital (like mine) you are paying the hospital facility fee the moment you walk in the door, plus nursing fees, infusion costs, and million other things. You could get IV saline and be charged $1K to your insurance.

So in my case, I was getting 82 grams of IVIG (which was VERY expensive to my insurance) but then I required a slow infusion rate in a 3-day split dose (of 27.3 grams each day). So in addition to the cost of the IVIG, I was paying for three days of infusion center costs. I hope that makes more sense now!

 

[Gingergrrl]

@Gingergrrl Can you post a link detailing the autoantibodies you tested positive for if and when you feel up to it? I have searched some of your old posts but could not find details.

Some day I am going to write out my entire history in one cohesive place b/c I get about 3-4 PM's per day asking me about it. BUT, I honestly do not mind and literally pray every day that something in my ramblings will help someone else!

I test positive for:

1) TPO
2) TGAb
3) anti GAD65
4) N-type Calcium Channel Autoantibody

and seven Cell Trend autoantibodies (beta-adrenergic and anti-muscarinic/ cholinergic)

Hope this helps.

 

[Seadragon]

Thanks @Gingergrrl That is interesting!

I don't think any of those tests are available routinely here in the UK.

Just glad you have made so much progress with your treatment...I hope that continues

Love Bunchy x

 

[Seadragon]

Since you have signs of autoimmunity. Have you ever been able to try steroids to see if it helps?

I tried a very short course of steroids last year and they helped a lot but I struggled badly with steroid withdrawal symptoms of much worse fatigue, weakness, nausea, faintness etc even after only a few days on them so too scared to try again for the moment.

 

[Gingergrrl]

I don't think any of those tests are available routinely here in the UK.

The first two tests are standard thyroid tests (for Hashimoto's Disease) and I would be very surprised if not available in the UK by a GP or Endo. The other two are more obscure, and can be done by standard labs in the US (like Quest or Lab Corp) but not necessarily as accurate results vs. Mayo. And the Cell Trend tests cannot be done in the US whatsoever and you have to send the blood sample to Germany on your own (a bit of extra work and expensive from the US but it can be done). Hope this helps.

Just glad you have made so much progress with your treatment...I hope that continues

Thank you so much!

 

[pibee]

There are many factors involved in the cost in the US that it sounds like do not pertain to China. When you get IVIG at an infusion center that is affiliated with a hospital (like mine) you are paying the hospital facility fee the moment you walk in the door, plus nursing fees, infusion costs, and million other things. You could get IV saline and be charged $1K to your insurance.

So in my case, I was getting 82 grams of IVIG (which was VERY expensive to my insurance) but then I required a slow infusion rate in a 3-day split dose (of 27.3 grams each day). So in addition to the cost of the IVIG, I was paying for three days of infusion center costs. I hope that makes more sense now!

Yes, I know it's much different in USA than [most] of the world, this is why I was interested in the price of mere drug.

From what I know most affordable in EU is 550EUR for 15grams, at De Meirleir's clinic. But they probably are not willing to give higher doses. Don't know.

 

[Gingergrrl]

Yes, I know it's much different in USA than [most] of the world, this is why I was interested in the price of mere drug.

I don't really know what the price of IVIG alone would be (without the infusion center costs) and never looked into this b/c the whole thing is prohibitively expensive in the US and really cannot be done without insurance (unless you were a millionaire LOL). IVIG is often called "liquid gold" here.

From what I know most affordable in EU is 550EUR for 15grams, at De Meirleir's clinic. But they probably are not willing to give higher doses. Don't know.

That is a very good price and much cheaper than in the US. I Googled Euros to Dollars and it looks like it is approx $643 dollars (to 550 Euros) for 15 grams which would put my total cost (for the drug alone) around $3215 which would be unheard of in the US.

 

[EMilo]

I test positive for:

1) TPO
2) TGAb
3) anti GAD65
4) N-type Calcium Channel Autoantibody

and seven Cell Trend autoantibodies (beta-adrenergic and anti-muscarinic/ cholinergic)

Hope this helps.

Hi @Gingergrrl , one of these days I really want to chat with you (I'm one of the 3-4 PMs, I guess ). I've been doing SCIG for 2.5 years st CVID doses and now Dr. Kaufman wants me to do high-dose IVIG. I don't have positive tests for any autoantibodies that I know of except one Cell Trend: Anti alpha-1-adrenergic AB. I'm new to the whole IVIG-for-autoimmunity thing and it feels a bit too experimental to me since I don't have tests to back up the reasoning for it. Do you have any insight? Or would you mind telling me your dosage/frequency/weight so I have some sort of comparison to what I'll be doing? I've asked in all my Facebook groups and can't find anyone else with ME or MCAS who is getting high-dose IVIG and I hate not having patient input. Thanks so much!

 

[Learner1]

I don't have positive tests for any autoantibodies that I know of except one Cell Trend: Anti alpha-1-adrenergic AB. I'm new to the whole IVIG-for-autoimmunity thing and it feels a bit too experimental to me since I don't have tests to back up the reasoning for it. Do you have any insight? Or would you mind telling me your dosage/frequency/weight so I have some sort of comparison to what I'll be doing? I've asked in all my Facebook groups and can't find anyone else with ME or MCAS who is getting high-dose IVIG

I'm also a patient of your doctor, and have autoimmune MCAS and A1 and M4 antibodies, so I might actually be more similar to you. I had immunodeficiency also, and started at .75g/kg IVIG every 3 weeks. For immunodeficiency alone, I believe the dosing is closer to .4g/kg every 3-4 weeks.

We decided to try to raise the dose to try to attack the autoimmunity, so I'm currently getting the equivalent of 1.5g/kg every 4 weeks, like the patient in the attached case study, which discusses IVIG used gor autoimmunity. My other doctor saw Dr. Weinstock present this case at a recent conference and was very impressed with his talk and that I was already on the protocol.

I've been told 70% of the IVIG in the US is prescribed for autoimmunity.

 

[EMilo]

I'm also a patient of your doctor, and have autoimmune MCAS and A1 and M4 antibodies, so I might actually be more similar to you. I had immunodeficiency also, and started at .75g/kg IVIG every 3 weeks. For immunodeficiency alone, I believe the dosing is closer to .4g/kg every 3-4 weeks.

We decided to try to raise the dose to try to attack the autoimmunity, so I'm currently getting the equivalent of 1.5g/kg every 4 weeks, like the patient in the attached case study, which discusses IVIG used gor autoimmunity. My other doctor saw Dr. Weinstock present this case at a recent conference and was very impressed with his talk and that I was already on the protocol.

I've been told 70% of the IVIG in the US is prescribed for autoimmunity.

@Learner1 , ah, I'm so happy to know you. It puts my mind at ease just having a comparison. Thanks for responding.

I was diagnosed with CVID and have been on 10 grams a week subcutaneous for the last 8 months (it's the equivalent of 0.9g/kg every 4 weeks). I was half that dose for two years before that (10g every week, which worked out to 0.45g/kg/month). I'm happy to know that my dosing thus far is similar to your examples.

Is your current dose of 1.5g/kg every 4 weeks for IVIG (not subq)? That's higher than he wants me to go, which, again, makes me feel better about the whole thing because I want to be sure mine isn't too high. My order is to change from subq to IV at 35g every 3 weeks (which works out to 1.05g/kg/month -- only a tiny increase from my SCIG dose, but, being that it's IV, it's more potent, I guess).

The thing is, we are working up to that dosage over FOUR months. Starting at 2.5g every week for a month, then 5 grams, then 7.5 grams every 2 weeks, then 10 grams every 2 weeks and, eventually, I hope, 35g every 3 week. The big problem is, I've only had one 2.5g IV treatment (at a slower rate than I've ever heard of others going) and I had a horrible 2-day migraine. With subq at 10grams, I never got any headaches. It actually energized me. I can't imagine how bad it'll get as we raise the dose. Plus, with the IVIG, I have to deal with a nurse (which was a very bad experience this first time).

Can you tell me how you know for sure that your MCAS is autoimmune in nature? That might make me feel more at ease. I have had my thyroid ablated with radiation and my endo said it's autoimmune, but I never actually had high thyroid antibodies (until I started gammaglobulin, which is a false positive, I assume).

Thanks so much for the links, very helpful. Are you in California?

 

[EMilo]

@Learner1 Wait, you're in the PNW? I'm in Seattle. Maybe we know each other on Facebook?

 

[Learner1]

Yes, I believe our paths have crossed.

I'll PM you.

 

[Learner1]

Is your current dose of 1.5g/kg every 4 weeks for IVIG (not subq)?

I get half every 2 weeks.

That's higher than he wants me to go, which, again, makes me feel better about the whole thing because I want to be sure mine isn't too high. My order is to change from subq to IV at 35g every 3 weeks (which works out to 1.05g/kg/month -- only a tiny increase from my SCIG dose, but, being that it's IV, it's more potent, I guess).

The thing is, we are working up to that dosage over FOUR months. Starting at 2.5g every week for a month, then 5 grams, then 7.5 grams every 2 weeks, then 10 grams every 2 weeks and, eventually, I hope, 35g every 3 week. The big problem is, I've only had one 2.5g IV treatment (at a slower rate than I've ever heard of others going) and I had a horrible 2-day migraine. With subq at 10grams, I never got any headaches. It actually energized me. I can't imagine how bad it'll get as we raise the dose. Plus, with the IVIG, I have to deal with a nurse (which was a very bad experience this first time).

The home infusion service I use has provided 3 very competent nurses that I like. They try to keep me with the same nurse, though.

As for IVIG, I had significant side effects on Gammaked, but switching to Gammunex C was better, though they're the same on paper. I was in the ER after the 2nd infusion with brain swelling, but have learned to manage the side effects wiyh the support meds, boswellia and curcumin. I also get 500ml saline each time. So, there are a lot of variables that can be adjusted.

Can you tell me how you know for sure that your MCAS is autoimmune in nature? That might make me feel more at ease. I have had my thyroid ablated with radiation and my endo said it's autoimmune, but I never actually had high thyroid antibodies (until I started gammaglobulin, which is a false positive, I assume).

I was negative for the KIT mutation, so Dr. K suspects its autoimmune. He says people with other immune problems tend to collect more over time. I believe the Hashis autoimmunity is a different type of mechanism than would be affected by IVIG, but I could be wrong.

Thanks so much for the links, very helpful.

You are welcome!

 

[Gingergrrl]

Hi @Gingergrrl , one of these days I really want to chat with you

I'm happy to chat further if you want to send me a PM (if you still had questions).

I don't have positive tests for any autoantibodies that I know of except one Cell Trend: Anti alpha-1-adrenergic AB. I'm new to the whole IVIG-for-autoimmunity thing and it feels a bit too experimental to me since I don't have tests to back up the reasoning for it.

High dose IVIG for autoimmunity is not considered experimental at all and is one of the best treatments for autoimmunity that exists (IMO) b/c it is not an immunosuppressant per se vs. an immune modulator. But in your case if autoimmunity is not an issue, then I would clarify why it is being recommended.

Or would you mind telling me your dosage/frequency/weight so I have some sort of comparison to what I'll be doing?

I was doing 82 grams in a 3-day split dose every three weeks (which equals 27.3 grams per day). I have tapered down slowly from this and am now doing 55 grams in a 2-day split dose every eight weeks. I will be completely stopping IVIG soon and just doing Rituximab. The brand I use has always been Gamunex and I have never tried any others.

I do it at an infusion center b/c of risk of allergic reactions and third spacing from MCAS (even though it has been okay, we did everything possible to increase safety). I do not get any extra saline or fluid and I do a very slow infusion speed. My pre-meds are Tylenol, Pepcid, and Atarax. Hope this helps.

 

[deeterm]

Is there an update on SK2018 somewhere?

 

[deeterm]

Also in an earlier post SK2018 mentioned a drug in development with more specificity than Rituximab, does anyone know the name of said drug?