Starting ivig - concerns

[Deebeewaldo]

Hi all,

I’ve found a doctor who is willing to try immune treatments for my POTs (based on antibodies), along with other general signs and symptoms suggestive of some sort of strange immune dysfunction/autoimmunity, coupled with a strong family history of autoimmunity on my mothers side. I also have a tendency to mildly low complement and elevated ANA.

the doctor has suggested IVIG which I’m hopeful about. However the doctor has proposed dosing of 0.4g/kg once per month for 5 months.
My concern is that this dosing might be too low to have any effect on my autoimmune issues. My understanding from online research is that this dose is for primary immune deficiency, whereas Ivig for autoimmune issues is typically between 1-2g/kg per month.

I don’t want to try this dosing regimen for 5 months, only to be told it failed and move on to something else, when it might just be the case of the dose being too low. perhaps it makes sense to be started on this dose, but should I ask the doctor if we can up it after perhaps dose 3 if I am seeing no change in symptoms?

id be very grateful to hear what dose anyone else who got IVIG for suspected autoimmune issues was put on, or any suggestions you might have for engaging my doctor on this.

thanks,
D

 

[Gingergrrl]

You definitely want high dose IVIG for autoimmunity and low dose for immune deficiency (so you are correct in what you said). I did high dose IVIG for 2 years (mid 2016 to mid 2018) and I apologize that I do not remember how the calculation was made except that it used my body weight. I got IVIG every 3-weeks in a 3-day cycle and then we stretched it out to every 4-weeks (still in a 3-day cycle). I am tagging someone who is also familiar with IVIG and will be more helpful than I am re: how they do the calculations.

@Learner1

 

[Learner1]

Immunodeficiency dosing is .4g/kg of body weight per month. Autoimmune dosing goes from .75 to 2.0g/kg per month.
See attached for a case study of the 2.0g/kg dosing.

I was originally on .75g/kg/month but doses every 3 weeks as I was approved for immunodeficiency and my doctor tried to go as high a dose as possible by shortening the timing. I did 55g in one day, which took 10 hours, and I have gotten significant drug support to reduce brain inflammation - benadryl, ketorolac, SoluMedrol, and lorazepam, as well as curcumin and boswellia.

 

[Deebeewaldo]

You definitely want high dose IVIG for autoimmunity and low dose for immune deficiency (so you are correct in what you said). I did high dose IVIG for 2 years (mid 2016 to mid 2018) and I apologize that I do not remember how the calculation was made except that it used my body weight. I got IVIG every 3-weeks in a 3-day cycle and then we stretched it out to every 4-weeks (still in a 3-day cycle). I am tagging someone who is also familiar with IVIG and will be more helpful than I am re: how they do the calculations.

@Learner1

hi @Gingergrrl
thanks very much for your reply- this is very helpful. I definitely need to go back and talk about the dosing/ frequency protocol with the doctor. Your response has confirmed this in my mind.

did 2 years put your issues into remission, or just had enough of trying it?

i had not thought about getting it in cycles of eg 3 days in a row, so I will discuss this with him too if he is amenable to higher doses (hopefully!) thanks for these helpful points!

D

 

[Deebeewaldo]

Immunodeficiency dosing is .4g/kg of body weight per month. Autoimmune dosing goes from .75 to 2.0g/kg per month.
See attached for a case study of the 2.0g/kg dosing.

I was originally on .75g/kg/month but doses every 3 weeks as I was approved for immunodeficiency and my doctor tried to go as high a dose as possible by shortening the timing. I did 55g in one day, which took 10 hours, and I have gotten significant drug support to reduce brain inflammation - benadryl, ketorolac, SoluMedrol, and lorazepam, as well as curcumin and boswellia.

hi @Learner1

thanks very much for your response. And thanks for sharing that case study, it's a good one. I'd love to know what happened to this woman in follow-up, if she continued needing monthly IVIG or if she found another way to induce a remission of her symptoms. Unfortunately LDN did not work for me - it raises my prolactin every time I take it, whether in low dose or ultra low-dose form, which causes it's own problems.

Thanks for sharing your dosing regimen, I had not thought of having doses administered closer together, I might try to ask for this instead perhaps, as a way to up the dose. I have normal immunoglobulin levels (well, low normal but still within range), so I'm not approved for immunodeficiency reasons.

I have not yet discussed with my doctor drug support to manage and minimise side effects. But I am prone to very frequent headaches since getting ill, so suspect I will require something. Can I ask if these drug supports are usually given intravenously or orally? Did you start off with supports, or trial IVIG on its own and experience side effects which warranted support drugs to minimise these?

Ten hours is a long time - I guess 5.5 g/hour - is this how doctors talk about these rates? Sorry for all the questions, I'm very much at the start of this journey, and quite nervous having previously had issues with other drugs, so appreciate any info you can share.

Thanks for sharing your experience - I appreciate it.

D

 

[Gingergrrl]

hi @Gingergrrl thanks very much for your reply- this is very helpful. I definitely need to go back and talk about the dosing/ frequency protocol with the doctor. Your response has confirmed this in my mind.

No problem and I am happy to help! When I was doing IVIG, I joined two private medical groups on Facebook re: IVIG that were very helpful. I was able to ask all of my questions there and no matter how obscure, there was always someone who had gone through the same experience. I am not a fan of FB but it was very helpful re: getting into on IVIG from others who had been through it. Let me know if you want the info on those groups.

did 2 years put your issues into remission, or just had enough of trying it?

It did put me into remission but I have to give two caveats. The first was that ME/CFS turned out not to be my diagnosis (vs. several other autoimmune diseases) and the second was that it put me into remission in conjunction with Rituximab. I did a total of three years of infusions and the first year was IVIG alone, the second year was both IVIG & Rituximab, and the third year was Rituximab alone. There were specific reasons why we did it this way (in my case) that I can also explain if it would be helpful.

i had not thought about getting it in cycles of eg 3 days in a row, so I will discuss this with him too if he is amenable to higher doses (hopefully!) thanks for these helpful points!

We had to break my IVIG infusions into a 3-day cycle b/c I required a very slow infusion speed (and I mean insanely slow) in order to tolerate it. I ended up getting 27.3 grams per day and each infusion took approx 7-8 hours (done in a 3-day cycle). However, with the Rituximab, I was able to do the entire infusion in one day and did not need to split up the dose over multiple days. I can also explain more about this (if it would be helpful).

Edited to Add: I am happy to explain anything that would be helpful but don't want to give you a bunch of details that are not relevant to your personal situation or take this off-track

 

[GlassCannonLife]

No problem and I am happy to help! When I was doing IVIG, I joined two private medical groups on Facebook re: IVIG that were very helpful. I was able to ask all of my questions there and no matter how obscure, there was always someone who had gone through the same experience. I am not a fan of FB but it was very helpful re: getting into on IVIG from others who had been through it. Let me know if you want the info on those groups.



It did put me into remission but I have to give two caveats. The first was that ME/CFS turned out not to be my diagnosis (vs. several other autoimmune diseases) and the second was that it put me into remission in conjunction with Rituximab. I did a total of three years of infusions and the first year was IVIG alone, the second year was both IVIG & Rituximab, and the third year was Rituximab alone. There were specific reasons why we did it this way (in my case) that I can also explain if it would be helpful.



We had to break my IVIG infusions into a 3-day cycle b/c I required a very slow infusion speed (and I mean insanely slow) in order to tolerate it. I ended up getting 27.3 grams per day and each infusion took approx 7-8 hours (done in a 3-day cycle). However, with the Rituximab, I was able to do the entire infusion in one day and did not need to split up the dose over multiple days. I can also explain more about this (if it would be helpful).

Edited to Add: I am happy to explain anything that would be helpful but don't want to give you a bunch of details that are not relevant to your personal situation or take this off-track

Ah wow so no ME/CFS - are you happy to share what the autoimmune diseases were/are? Are you in ongoing remission from all of them now?

 

[Gingergrrl]

Ah wow so no ME/CFS - are you happy to share what the autoimmune diseases were/are? Are you in ongoing remission from all of them now?

It turned out that ME/CFS was a misdiagnosis for me (although from 2013 to 2016, I 100% believed that it was my correct diagnosis). My case was really confusing even for smart competent doctors. My diagnoses ended up Autoimmune POTS, MCAS, LEMS & Hashimoto's (plus some other random problems sprinkled in like other endocrine issues, chronic neck pain, etc). I use the word "remission" for lack of a better term. Compared to where I was for several years, I am in remission, but I am not "pre-illness" level (and have no expectation that I ever will be).

 

[GlassCannonLife]

It turned out that ME/CFS was a misdiagnosis for me (although from 2013 to 2016, I 100% believed that it was my correct diagnosis). My case was really confusing even for smart competent doctors. My diagnoses ended up Autoimmune POTS, MCAS, LEMS & Hashimoto's (plus some other random problems sprinkled in like other endocrine issues, chronic neck pain, etc). I use the word "remission" for lack of a better term. Compared to where I was for several years, I am in remission, but I am not "pre-illness" level (and have no expectation that I ever will be).

Sorry to hear you think you won't ever be able to fully recover. It's very interesting to see though a very clear confirmation of ME/CFS being more of a downstream symptom than a specific illness. I wonder how many different causes it really has. Surely one day it won't even be a condition anymore, there will just be the actual causes and their treatments.

 

[Gingergrrl]

Sorry to hear you think you won't ever be able to fully recover.

I appreciate the kind words and I think I must've sounded negative which I did not intend! I am beyond thrilled w/my progress and it has exceeded my wildest expectations. I just meant that I do not have the expectation that I will ever be at pre-illness level of functioning and that is okay.

It's very interesting to see though a very clear confirmation of ME/CFS being more of a downstream symptom than a specific illness. I wonder how many different causes it really has. Surely one day it won't even be a condition anymore, there will just be the actual causes and their treatments.

I am not sure that I agree with this and I do believe that ME/CFS is a distinct illness but that (in my case), it did not turn out to be my proper diagnosis. I believe that there are endless others out there like me who were also misdiagnosed vs. others who were properly diagnosed and ME/CFS is their diagnosis. In the absence of a bio-marker, I guess we will never know for sure.

I apologize to the OP (@Deebeewaldo) for taking this off-track from the topic of high dose IVIG for autoimmunity (which is a very important topic IMO).

 

[Learner1]

But I am prone to very frequent headaches since getting ill, so suspect I will require something. Can I ask if these drug supports are usually given intravenously or orally? Did you start off with supports, or trial IVIG on its own and experience side effects which warranted support drugs to minimise these?

They are given IV because we are already doing an IV and I am allergic to pill forms of these. I started off with SoluMedrol, Benadryl, and ketorolac, then the lorazepam was added as a mast cell stabilizer. I have always have had brain swelling/stiff neck/headache, so the drugs help mitigate these. Over time, the side effects have improved, but they are still there. I do know of 2 patients who had neurological issues due to brain swell ng so it is important to have a strategy to keep it managed.

Ten hours is a long time - I guess 5.5 g/hour - is this how doctors talk about these rates? Sorry for all the questions, I'm very much at the start of this journey, and quite nervous having previously had issues with other drugs, so appreciate any info you can share.

The entire process is 10 hours, including preparation of everything and infusion of an additional 500ml of saline. The infusion is started slowly and gradually increased over time, so it is not equal over time. I don't know the exact rate, but it seems to be twice as fast as Gingergrrl's.

I wonder how many different causes it really has. Surely one day it won't even be a condition anymore, there will just be the actual causes and their treatments.

I think there is some truth to this. There are many of us with very different etiologies and driver's of our illnesses, though there are some significant overlaps as well.

I am not sure that I agree with this and I do believe that ME/CFS is a distinct illness but that (in my case), it not turn out to be my proper diagnosis. I believe that there are endless others out there like me who were also misdiagnosed vs. others who were properly diagnosed and ME/CFS is their diagnosis. In the absence of a bio-marker, I guess we will never know for sure.

I think you may be muddying the waters for everyone.

Given what you've shared publicly of your history, your illness seems to have been triggered by mold mycotoxins and Epstein Barr, which are not uncommon causes for those of us with ME/CFS. Epstein Barr is known to trigger all sorts of autoimmune antibodies - you just lucked out and got ones associated with POTS and Lambert Eaton Syndrome. The rest of us may have a variety of other antibodies and we may have other herpesviruses, other viruses, or bacterial infections triggering our illnesses. Mold mycotoxins can trigger mast cell activation, which you also have said you had and which many ME/CFS patients have as well.

In any case, the treatments of treating the viruses, reducing the mycotoxins (or other toxicity) and supporting the immune system and going after autoimmunity with treatments like IVIG and Rituximab may work for many patients who have ME/CFS and not just your very specific and unique situation. I do have ME/CFS and I did benefit from these same treatments prescribed in a slightly different format.

The NIH has definitely found patients who were misdiagnosed who actually had cancer or mitochondrial disease. But all this points to having an inquisitive doctor who runs tests to identify any infections, any toxicity, any autoimmune antibodies and anything else and treating what's found. The label is not what's important - many times it stands in the way of patients getting a thorough workup and appropriate care.

 

[Gingergrrl]

They are given IV because we are already doing an IV and I am allergic to pill forms of these. I started off with SoluMedrol, Benadryl, and ketorolac, then the lorazepam was added as a mast cell stabilizer.

Just in case it is helpful for the original poster, my pre-meds for IVIG were Atarax, Tylenol & Pepcid (all in pill form). I am allergic to many dyes so my meds are all dye-free (but that is in general and not specific to IVIG pre-meds).

Because of my MCAS (prior to my remission), I had third spacing of fluid that caused me to have pulmonary edema from regular saline that was infused too quickly. So my former MCAS specialist wrote the prescription for IVIG so that I did not receive any extra fluids and that the infusion speed could not exceed 40 ml/hour (this is why I had to do it so slowly in a 3-day cycle). But I realize that I am not the norm

I don't know the exact rate, but it seems to be twice as fast as Gingergrrl's.

My infusion speed for IVIG was 35 to 40 ml per hour (which is extremely slow but I could not tolerate anything faster b/c IVIG is such a thick substance). Versus my infusion speed for Rituximab, I was able to go up to 80 ml per hour.

There are many of us with very different etiologies and driver's of our illnesses, though there are some significant overlaps as well.

I completely agree with this and hope it didn't sound like I was saying something different. I think there are many illnesses which have the exact same triggers & etiologies (such as viruses, bacteria, mold/mycotoxins, other toxins, etc) but then the ultimate outcome is different.

I think you may be muddying the waters for everyone.

I definitely don't mean to be !

Given what you've shared publicly of your history, your illness seems to have been triggered by mold mycotoxins and Epstein Barr, which are not uncommon causes for those of us with ME/CFS.

You are 100% correct that two of the MAJOR triggers of my illness were severe Mono from EBV followed by several years of exposure to toxic black mold/mycotoxins. These are both common triggers in ME/CFS which is what made my case more confusing (b/c I had the same triggers). I also had two of the most common co-morbidities with ME/CFS which were POTS & MCAS.

But I think what made my case different was that I had progressive muscle weakness that affected my lungs & breathing until I could no longer walk without a wheelchair. It was progressively getting worse but I did not experience PEM (as others with ME/CFS described it).

Mold mycotoxins can trigger mast cell activation, which you also have said you had and which many ME/CFS patients have as well.

I agree 100% that my MCAS was triggered by several years of exposure to toxic black mold and this was one of the factors that led to my overall autoimmunity ending up so severe. I completely understand why so many doctor felt that CFS was my diagnosis until it became clear that LEMS was a closer match to what I was experiencing (plus I consistently tested positive for the LEMS autoantibodies).

In any case, the treatments of treating the viruses, reducing the mycotoxins (or other toxicity) and supporting the immune system and going after autoimmunity with treatments like IVIG and Rituximab may work for many patients who have ME/CFS and not just your very specific and unique situation. I do have ME/CFS and I did benefit from these same treatments prescribed in a slightly different format.

I totally agree and hope that it did not sound like I was saying differently. I just like to clarify when people ask me about my remission that ME/CFS did not ultimately turn out to be my diagnosis (to the absolute best understanding of my doctors with the existing science).

The label is not what's important - many times it stands in the way of patients getting a thorough workup and appropriate care.

I think the label that someone is given can be important (especially for insurance purposes for getting treatments approved) but in other ways it is not important.

 

[Learner1]

I think the label that someone is given can be important (especially for insurance purposes for getting treatments approved) but in other ways it is not important.

Unfortunately, a label of ME/CFS does not justify any treatment with anyone's insurance company. It is far better to have a mysterious viral illness triggering mysterious autoimmunity to qualify for treatment, like these ICD10 codes, obviously with the cooperation of one's doctor:

B34.9 Viral infection, unspecified

B97.89 Other viral agents as the cause of diseases classified elsewhere

B27.09 Gammaherpesviral mononucleosis with other complications

B27.99 Infectious mononucleosis, unspecified with other complication

M35.9 Systemic involvement of connective tissue, unspecified

D89.89 Other specified disorders involving the immune mechanism, not elsewhere classified

D84.9 Immunodeficiency, unspecified

Doctors are taught "When you hear hoofbeats, think horses, not zebras." However, we are all zebras with a complex mix of overlapping but many times differing conditions. Most doctors use ME/CFS as a stopping point, not a starting point to roll up their sleeves and unravel what's wrong with us. I think if we want effective treatment, we are best off not having dead end ME/CFS, but having a mysterious illness to be unraveled. Many of us ME/CFS patients have MCAS, POTS, hypercoagulation, thyroid and adrenal issues, etc. These are all treatable, so we need to encourage out doctors to unravel our own personal mysteries, just as you doctors cleverly unraveled yours.

 

[Gingergrrl]

Unfortunately, a label of ME/CFS does not justify any treatment with anyone's insurance company. It is far better to have a mysterious viral illness triggering mysterious autoimmunity to qualify for treatment, like these ICD10 codes, obviously with the cooperation of one's doctor:

I completely agree that from an insurance perspective (in the US), that ME/CFS is a useless diagnosis that will not lead to any treatment.

Most doctors use ME/CFS as a stopping point, not a starting point to roll up their sleeves and unravel what's wrong with us. I think if we want effective treatment, we are best off not having dead end ME/CFS, but having a mysterious illness to be unraveled.

I agree.

Many of us ME/CFS patients have MCAS, POTS, hypercoagulation, thyroid and adrenal issues, etc. These are all treatable, so we need to encourage out doctors to unravel our own personal mysteries, just as you doctors cleverly unraveled yours.

I think we are both saying the same things and that my reply to @GlassCannonLife might have been confusing. I agree 100% that if someone has multiple common co-morbidities to ME/CFS (such as POTS, MCAS, etc) then these should all be diagnosed and treated.

What I was also trying to express was that I do believe that ME/CFS is a distinct diagnosis on it's own but that it just did not end up being my correct diagnosis (after several years of 100% believing that it was). I wasn't speaking from an insurance perspective vs. trying to express that I do believe that ME/CFS is it's own diagnosis, just as Lambert Eaton Syndrome is it's own diagnosis, or Myasthenia Gravis or Multiple Sclerosis, or Lupus, etc. I hope that makes more sense.

Edited to Add: I also wanted to clarify that POTS and/or MCAS can also be diagnoses on their own and I did not mean that everyone with POTS and/or MCAS also have ME/CFS (although a high percentage do).

 

[Learner1]

ME/CFS is just a set of symptoms that can be caused by a variety of things and driven by others. There is a lot of confusion because the research has muddled patients with completely different etiologies, genetics, environmental factors and comorbidities. I find it's a lot more useful to first and find treatable problems than discussing whether one has ME/CFS or not.

 

[Gingergrrl]

I find it's a lot more useful to first and find treatable problems than discussing whether one has ME/CFS or not.

I don't discuss whether anyone else on PR has ME/CFS and I only mention it in regard to myself. I do this b/c I receive many PM's (and public questions) asking me how I cured my ME/CFS. I completely understand this question b/c Phoenix Rising is a board for ME/CFS and when I joined PR in 2014, my official diagnosis from 5-6 different doctors that I had seen was ME/CFS.

But once my ME/CFS specialist told me that he felt ME/CFS actually was not my diagnosis (vs. LEMS and everything else that I mentioned above), and I agree with him 100%, then I feel that I need to clarify when people on PR ask me this question. I want to help in any way that I can, and am happy to do so, but I always clarify that in the end, in my own case, I ended up with a different diagnosis.

 

[Learner1]

but I always clarify that in the end, in my own case, I ended up with a different diagnosis.

Thank you for clarifying. However, the very treatments that helped you with your non-ME/CFS also have the potential to help those of us with ME/CFS, so I fear that in separating your case from all of ours, you unfortunately put people off from what might be useful treatment options. I do have ME/CFS and IVIG and Rituximab have been helpful. What we do have in common are Epstein Barr, exposure to mold mycotoxins and the development of antibodies, albeit yours were slightly different than mine.

The key point is that a virus, especially herpesviruses, as well as toxicity, can trigger autoimmunity. This is what the IVIG and Rituximab are treating, irrespective of which virus, which toxin and which antibodies we may happen to have.

 

[GlassCannonLife]

I don't understand though - how can there be ME/CFS once we have enough information? Unless it is literally the IDO mutation trap, in which case it would still probably be renamed to IDO syndrome or something..

If you have chronic infections, then that is your problem, if you have autoimmunity, that is your problem, if you have toxins, that is your problem.

ME/CFS is a useful label for when we don't understand what is happening, and it captures the collection of symptoms that emerge from whatever overwhelming issues our bodies have. But as soon as we figure out the core issue(s), then we will rename each one and that subset of people will fall way into their own disorder.

Is that not the consensus about this? I thought everyone thought this way.


Edit: sorry I just realised I'm derailing this thread further! Maybe we should have a separate thread for this discussion.

 

[Learner1]

I don't understand though - how can there be ME/CFS once we have enough information? Unless it is literally the IDO mutation trap, in which case it would still probably be renamed to IDO syndrome or something..

That's a very good point.. I've been in and out of the IDI trap and it didn't cure me, though it likely helped my fatigue a bit.

If you have chronic infections, then that is your problem, if you have autoimmunity, that is your problem, if you have toxins, that is your problem.

Exactly.

ME/CFS is a useful label for when we don't understand what is happening, and it captures the collection of symptoms that emerge from whatever overwhelming issues our bodies have. But as soon as we figure out the core issue(s), then we will rename each one and that subset of people will fall way into their own disorder.

I think you are on to something, but then we have the problem of everyone advocating for their own set of issues rather than all of us together fighting ME/CFS... so there might be some resistance to that notion

Is that not the consensus about this? I thought everyone thought this way.

I don't think everyone feels this way, but I think it's true. We live in an era where individualized medicine is possible, and as we each have individual genetics and environmental factors that may be contributing to our symptoms, I really find it hard to stick to labels which lump together people with similar symptoms as they are, in fact, not of the sane etiology and don't have the same drivers.

Edit: sorry I just realised I'm derailing this thread further! Maybe we should have a separate thread for this discussion.

Perhaps we should. These are important insights about what we are fighting

 

[GlassCannonLife]

@Learner1 I think the ME/CFS label is definitely useful at this stage of the game for advocacy, research, etc, and I don't think we should drop it by any means. I just expect it will fall away naturally in the coming years as it is all unravelled.

But yes I'll leave it there for this thread!

Apologies again @Deebeewaldo