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What labs to do before starting IVIG/Rituximab?

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Hi,

Before starting IVIG or rituximab treatment, are there any antibody tests I should have done?
- I've read that since IVIG introduces lots of antibodies from the blood of thousands of donors, any antibody tests done while on IVIG would give you a false positive.
- If I would like to eventually go from IVIG to rituximab, are there certain lab tests I should have? For example, JC Virus test (since rituximab weakens your immune system, it could cause the reactivation of some deadly viruses like JC Virus and Hepatitis B)... Are there others that you can think of?



Thanks!
 

valentinelynx

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I would hope the physician giving you IVIG &/or rituximab could give you guidance on this. I would suggest doing the CellTrend antibody testing, not for safety reasons, but because if you test high on these antibodies, there is some evidence you may be a good candidate for rituximab. And you could contribute to the data on this hypothesis if you do receive rituximab.
 

Learner1

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Rituximab not indicated for treatment of ME/CFS!!!
Well, if you put it that way, no treatment is indicated for ME/CFS, so we may as well give up...:bang-head:

Actually, we are all individuals with individual genetics and environmental factors, and the researchers seem to belueve there are subsets of us within the entire ME/CFS population. So, as a patient, it is important to investigated potential treatments carefully to see if they are appropriate for us.

Doing any antibody trsting you can to figure out what autoimmune problems you have prior to IVIG is important, as it's difficult to find out after you start, and insurance will want justification for an expensive treatment. Also immune system testing to determine what's off with your immune system to predict if these treatments would help.

These are serious treatments and you should be working with a knowledgeable doctor who can take you through the process safely.
 

Gingergrrl

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Before I reply, I just want to give the caveat that none of this is medical advice and to ask your own doctor what tests are recommended.

Before starting IVIG or rituximab treatment, are there any antibody tests I should have done?
IVIG and Rituximab are two different treatments and each have different tests that should be done before starting. For example, I did the anti-phospholipid (Hughes) panel prior to starting IVIG to make sure I was not a blood clot risk. With Ritux, I tested for Hepatitis and TB because both can re-activate with Ritux and if you had either in the past, it would not be safe to get Ritux. I also tested for JC virus (before Ritux).

- I've read that since IVIG introduces lots of antibodies from the blood of thousands of donors, any antibody tests done while on IVIG would give you a false positive.
Yes, you will always be at risk of false positives so once you have had IVIG, you can never know if viral testing like EBV is accurate. PCR tests will still be accurate but antibodies can always show a false positive through passive immunity from the IVIG.

- If I would like to eventually go from IVIG to rituximab, are there certain lab tests I should have? For example, JC Virus test (since rituximab weakens your immune system, it could cause the reactivation of some deadly viruses like JC Virus and Hepatitis B)... Are there others that you can think of?
I tested for JC virus (one test was called "Stratify" and I forget the other one), plus multiple Hepatitis and TB tests ("Quantiferon Gold"). If you have had Hep or TB in the past, it would not be safe to get Ritux b/c it can cause them to re-activate. I had never had either so it was not an issue.
 
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I would hope the physician giving you IVIG &/or rituximab could give you guidance on this. I would suggest doing the CellTrend antibody testing, not for safety reasons, but because if you test high on these antibodies, there is some evidence you may be a good candidate for rituximab. And you could contribute to the data on this hypothesis if you do receive rituximab.
Yes, I did get the CellTrend antibody testing done two months ago, and I came back positive on 3/11 antibodies. however, they were not super high values; They were just a few points above the lower limit for the positive range. I was also in the "at-risk" range for a few of them.


IVIG and Rituximab are two different treatments and each have different tests that should be done before starting. For example, I did the anti-phospholipid (Hughes) panel prior to starting IVIG to make sure I was not a blood clot risk. With Ritux, I tested for Hepatitis and TB because both can re-activate with Ritux and if you had either in the past, it would not be safe to get Ritux. I also tested for JC virus (before Ritux).
[...]
I tested for JC virus (one test was called "Stratify" and I forget the other one), plus multiple Hepatitis and TB tests ("Quantiferon Gold"). If you have had Hep or TB in the past, it would not be safe to get Ritux b/c it can cause them to re-activate. I had never had either so it was not an issue.
I, too, took the HepB and TB tests recently. They came back negative. I plan on getting the Stratify JCV test from Quest Diagnostics tomorrow morning. I heard the vast majority of people actually are positive for this virus... Did you come back positive for JCV? Would you still have done rituximab if you tested positive?

Also, I thought after 2 months of quitting IVIG, your antibody lab tests would be accurate again since all the foreign antibodies have left your body by then?
 

Gingergrrl

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Yes, I did get the CellTrend antibody testing done two months ago, and I came back positive on 3/11 antibodies. however, they were not super high values; They were just a few points above the lower limit for the positive range. I was also in the "at-risk" range for a few of them.
To me, this would indicate that autoimmunity might not be the core issue (unless there are other autoantibodies that you are positive for on other tests)? I know that Cell Trend is not yet recognized in the US but in my opinion (and my doctors) the tests are valid. I was very high positive on 7/9 and we ran the test twice to confirm. This was back in 2016 before they offered 11 tests so I only did the nine. Because I already had so many other autoimmune issues, this helped to confirm my whole system was in "autoimmune chaos" as my doctor called it at the time.

I plan on getting the Stratify JCV test from Quest Diagnostics tomorrow morning. I heard the vast majority of people actually are positive for this virus... Did you come back positive for JCV? Would you still have done rituximab if you tested positive?
If I recall correctly, I was a low positive on the IgG for the JC Virus (like most of the population) but my doctor did a PCR test which was negative.

Also, I thought after 2 months of quitting IVIG, your antibody lab tests would be accurate again since all the foreign antibodies have left your body by then?
I have heard different things from different doctors but my MCAS doctor (who is an allergist/ immunologist) said that it takes approx eight weeks (2 months like you said) for the antibodies from IVIG to start clearing your system. But it is unclear if some tests could still reveal a false positive, especially for common antibodies like EBV.
 

Nickster

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My son has greatly improved on both IVIG and rituximab. He has completed 7 monthly IVIGs (4 days of infusion done monthly) and 1 rituximab (2 doses 2 weeks apart by IV and to be done every 6 months in this order). His sensitivities to sound, light, smell, temperature and stimulation have gone away. He still gets some reactions to food. But, overall he is better.
 
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Anyone knows if it is a must to be positive in those Cell Trend antibodies to be a good candidate for having succesfull with IViG or it may work anyway being negative?. I mean if it would be worth to give them a try blind (without doing Cell Trend antibodies) or even having done the analytics with negative results in them.

Hug :hug:
 

Gingergrrl

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My son has greatly improved on both IVIG and rituximab.
That is such great news @Nickster and I have been wanting to e-mail you for so long to find out how your son was doing but did not have a chance.

Anyone knows if it is a must to be positive in those Cell Trend antibodies to be a good candidate for having succesfull with IViG or it may work anyway being negative?
Cell Trend is just one set of testing for specific autoantibodies. There are endless autoantibodies that someone could be positive for in addition to endless reasons why a doctor might prescribe IVIG. It can be prescribed for both immune deficiency and autoimmunity with endless different protocols. You absolutely would NOT have to be positive specifically on Cell Trend in order to be a good candidate for IVIG. But there would need to be some reason why the IVIG was being prescribed and the treatment plan tailored to the specific person and illness.
 

Learner1

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To me, this would indicate that autoimmunity might not be the core issue (unless there are other autoantibodies that you are positive for on other tests)?
My values were similar and now that my infections have been treated and I'm left with the autoimmune issues, they seem to be my core issue, and getting rid of my autoimmune problems is a high priority for recovery.

Very few patients have so many wildly high values as you, @Gingergrrl but our autoimmunity can still be a very vexing and significant problem.
 

Gingergrrl

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Very few patients have so many wildly high values as you, @Gingergrrl but our autoimmunity can still be a very vexing and significant problem.
I agree and didn't mean anything I said to sound dismissive or minimize anything. I view both of my treatments as fairly risky and in my case, I am not sure if I would have done them without clear evidence of autoimmunity so when people ask, I try to give an honest answer (from my perspective as a patient, never as medical advice)!

I think I lose perspective b/c our doctor said I was "the most disabled/sickest patient he had seen with the most unequivocal autoantibody profile". I wrote this down when he said it and his words have stayed in my mind b/c they scared me but also surprised me how it could possibly be true?! It's all still kind of confusing for me and I have moments of still not even being sure what to call my illness although I know the label does not matter.

But you are right and people can have seronegative autoimmune diseases. It's not just the autoantibodies but the total clinical picture. I apologize, I don't think I am explaining my thoughts very well right now!
 

Learner1

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No worries... ;)

Most of us are lucky to have antibody testing at all, and if so, tests that are positive, proving autoimmunity. Then, we may not have the mainstream autoimmune problems (RA, lupus, Sjogrens, etc.) and end up having to fight for treatment or even for a doctor to recognize our problem and fight for the treatments we need.

But, our doctor took me seriously when I came to him with 2 autoimmune problems and he said, "once people have 9ne, they tend to collect them," and he patiently went on to find 2 more autoimmune problems in me. While I'll happily let you hold the title of the most disabled/sickest patient, he told me my case is extremely complex, but I also tend to think most of his patients are, it just goes with the territory.

It's most important to get an accurate set of diagnoses so that appropriate treatments can be selected to help us, and likely the solutions will be as unique as we are.
 

Gingergrrl

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Most of us are lucky to have antibody testing at all, and if so, tests that are positive, proving autoimmunity. Then, we may not have the mainstream autoimmune problems (RA, lupus, Sjogrens, etc.) and end up having to fight for treatment or even for a doctor to recognize our problem and fight for the treatments we need.
ITA and the only mainstream autoimmune diagnosis I have is Hashimoto's. I was negative for RA, lupus, Sjogrens, etc. The battle with my insurance for IVIG was the biggest of my life and is still not over! Edited to add: Someday I believe that LEMS and Autoimmune POTS will be mainstream even though they are not at present.

But, our doctor took me seriously when I came to him with 2 autoimmune problems and he said, "once people have 9ne, they tend to collect them," and he patiently went on to find 2 more autoimmune problems in me.
I was told the same thing by my Endo and another former doctor. They said that Hashi's (in my case) was the "gateway" to collecting other autoimmune diagnoses but I so wanted them to be wrong.

While I'll happily let you hold the title of the most disabled/sickest patient
I don't want that title and am thrilled not to have it any more!

he told me my case is extremely complex, but I also tend to think most of his patients are, it just goes with the territory.
ITA and I think he has the most complex group of us probably anywhere on the planet!

It's most important to get an accurate set of diagnoses so that appropriate treatments can be selected to help us, and likely the solutions will be as unique as we are.
Absolutely and I don't think any two of us are the same (and I always really resonate with your description that we are not "widgets" and each one of us is unique). I still believe there are hundreds of different illnesses represented on this board throughout the years vs. just one (but that is just my opinion).
 
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To me, this would indicate that autoimmunity might not be the core issue (unless there are other autoantibodies that you are positive for on other tests)?
Wouldn't a positive result indicate autoimmunity though? Even if it is a low positive? They set a negative range, at-risk range, and a positive range.

Be aware that at least 2 ME/CFS patients were made greatly worse on a long term basis as a result of rituximab.
Could you tell me more about these patients? Did they have the JC Virus and develop PML? Did they get better once rituximab was stopped and out of their system?


My son has greatly improved on both IVIG and rituximab. He has completed 7 monthly IVIGs (4 days of infusion done monthly) and 1 rituximab (2 doses 2 weeks apart by IV and to be done every 6 months in this order). His sensitivities to sound, light, smell, temperature and stimulation have gone away. He still gets some reactions to food. But, overall he is better.
May I ask how you managed to get approved for both? I have been fighting for almost a year, through three different doctors, and have been denied all the way to the top. My most recent rheumatologist was confident last week that she can get it approved and even scheduled my first infusions for yesterday and today, but at the very last minute, we got word from my insurance yesterday morning that the pre-auth was denied. A peer-to-peer review between my rheumatologist and my insurance was done yesterday and they want us to submit an EMG report... Ugh!
 

Hip

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Could you tell me more about these patients? Did they have the JC Virus and develop PML? Did they get better once rituximab was stopped and out of their system?
I don't think it was related to JC virus: one patient who got much worse on rituximab is Whitney Dafoe (Professor Ron Davis's son) and the other is Olaf Bodden in Germany.

Whitney is still very ill many years later and requires intravenous nutrition; Olaf Bodden I don't have long term info on.

It's hard to know exactly how many ME/CFS patients have been treated with rituximab; perhaps we could estimate it as approximately 1000 patients. Assuming that figure is accurate, one could say that you have a 1 in 500 chance of such serious adverse outcomes.
 
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Learner1

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Wouldn't a positive result indicate autoimmunity though? Even if it is a low positive? They set a negative range, at-risk range, and a positive range.
Yes, it does.
Could you tell me more about these patients? Did they have the JC Virus and develop PML? Did they get better once rituximab was stopped and out of their system?
No they didn't get better. Here's info on Olaf Bodden:

https://m-sportbild-bild-de.cdn.amp...-ist-das-kein-leben-45133844.sportMobile.html
 

Gingergrrl

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Wouldn't a positive result indicate autoimmunity though? Even if it is a low positive? They set a negative range, at-risk range, and a positive range.
I might have misunderstood something but was trying to explain how I reached my own decision re: which treatments to try based on feedback from my main doctor and MCAS doctor (plus Neuros that I saw at that time). There are a lot of different opinions out there that definitely conflict with each other.

I know some doctors consider an ANA titer to be positive if it is anything over 1:40. Mine was 1:160, speckled pattern and some doctors considered it very significant while others considered it very minor or completely irrelevant. I think just a positive ANA alone (with no symptoms of autoimmunity and no other positive test results) would have been totally disregarded.

That was similar to the feedback I got re: Cell Trend back in 2016. If I'd had 2-3 low positives, I got the sense my doctors would have disregarded it but b/c I had 7/9 very high positives, it was viewed as additional evidence of autoimmunity (combined with the ANA and my positive lab results from two Mayo autoimmune panels). It also matched with my severe POTS and muscle and breathing weakness.

So in totality, my doctors felt that I was a very good candidate for high dose IVIG and Rituximab. Without the autoantibody evidence, I am not sure that I would have pursued it so heavily b/c it was an epic, never-ending battle with my insurance. But in my case, we felt it was worth it, and it absolutely was. I am not trying to discourage you or anyone from doing these treatments, I am just explaining my decision process. I felt it was high risk but had the potential for high reward and in my case, I was correct.

I was also the first patient my main doctor had ever done the Cell Trend testing with after I learned of the tests, called the lab in Germany, and asked him if I could do them. I was "patient zero" for him with Cell Trend but now he runs these tests on most patients, and his office created a kit for them, so he may have a totally different perspective on it two years later. He may now consider all positive results to be useful in treating with IVIG and Rituximab. I am not sure and am basing it off of my experience from two years ago when we decided that this was the only logical treatment course for me.

I hope this makes more sense (and is just my own personal, non-medical interpretation and experience)!
 
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crypt0cu1t

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My son has greatly improved on both IVIG and rituximab. He has completed 7 monthly IVIGs (4 days of infusion done monthly) and 1 rituximab (2 doses 2 weeks apart by IV and to be done every 6 months in this order). His sensitivities to sound, light, smell, temperature and stimulation have gone away. He still gets some reactions to food. But, overall he is better.
He has done RTX? How is he doing tjese days?