How to rule out an autoimmune process ?

[Daffodil]

2 years ago or so?
A genius? A genius doesn't change theory and treatment approach every few years, and each time claiming to have found the cause of CFS/ME.
After years of treatment and damaged health i can only say he's a quack.

wow i am sorry that happened. Its weird that you say he was against it being autoimmune because he authored that paper "from infection to autoimmunity" i think it was called...several years ago

 

[Lalia]

This is a presentation given last year at the Immunodeficiency Foundation conference discussing autoimmune disease combined with immunodeficiency by Troy Torgerson at University of Washington. Hes a goid speaker, explains the immune systen well and discusses how IVIG and other treatments can be applies to immunodeficiency.

Hey @Learner1 - this video was awesome, thank you for sharing. It does run for two hours, so for those who may not have time to watch the whole thing, I found the first half hour most helpful and here are my notes in case this helps anyone else...

He talks a fair bit about B cells and rituximab at the fifty minute mark.

- The immunology field is moving away from ‘autoimmunity’ to ‘immune dysregulation’ – because we’re seeing lots of patients with co-existing immune deficiencies and AI.
- Immune dysregulation means the immune system is doing things it shouldn’t.
- Clinical definition: Disorder in which normal mechanisms of maintaining immune homeostasis are missing or overwhelmed leading to inappropriate immune responses.
- Difference between inflammation and autoimmunity, complement system creates inflammation (heat, redness, pain, pus) vs autoimmunity which is antibodies against the body.
- Four compartments that make up the immune system. Innate: (1) Complement (2) Phagocytes (neutrophils, monocytes) | Adaptive: (3) B cells (4) T cells.
- Regulatory T cells play an important role in autoimmunity.
- Defects in any of these immune compartments and/or a breakdown in communication between compartments can produce problems – it doesn’t matter which compartment you have problems in, it still leads to autoimmunity.
- We used to think disease was driven by infections, then we introduced antibiotics to kill the infections and started seeing autoimmunity, because the problem was driven by the immune system all along.
- You may not make antibodies to infections but you may make an ANA – doesn’t make sense but they see it all the time. *need to go back and double check what was said here.
- High value in genetic testing. Clinical presentation can be different in spite of genetic testing, so identifying the genes allows us to group patients based on genes and target drug therapy based on gene defects.
- If T cells are dysregulated, they can drive B cells to do abnormal things. Some of the genetic causes of disease cause T cells to respond abnormally, because they have a mutation in one particular protein.
- How to get an immunodeficiency diagnosis: try genetic testing (one third of immunodeficient patients have a gene mutation), biopsies, B cell/ T cell phenotyping.

 

[Learner1]

Thanks @Lalia

At 58:30, he begins talking about autoimmune treatments, including Rituximab, high dose IVIG and cyclophophosphamide.

 

[Gingergrrl]

It does run for two hours, so for those who may not have time to watch the whole thing, I found the first half hour most helpful and here are my notes in case this helps anyone else...

Wow, thank you @Lalia for summarizing that video and it was very helpful!

He talks a fair bit about B cells and rituximab at the fifty minute mark.

At 58:30, he begins talking about autoimmune treatments, including Rituximab, high dose IVIG and cyclophophosphamide.

Thank you both for breaking down the times in the video and I definitely want to watch around the 50 min mark to hear what he says re: these treatments.

 

[Lalia]

Thank you both for breaking down the times in the video and I definitely want to watch around the 50 min mark to hear what he says re: these treatments.

I think you’ll find his explanations really interesting @Gingergrrl !! He breaks down the 4 - 5 phases of B cell development and outlines the treatment therapies targeted for each phase. Like, @Learner1 said, he’s also a really engaging speaker and makes it all seem easy to understand

 

[Learner1]

Would l9ve to hear mote discusdion on this after you watch it @Gingergrrl !

 

[Gingergrrl]

I think you’ll find his explanations really interesting @Gingergrrl !! He breaks down the 4 - 5 phases of B cell development and outlines the treatment therapies targeted for each phase. Like, @Learner1 said, he’s also a really engaging speaker and makes it all seem easy to understand

Would l9ve to hear mote discusdion on this after you watch it @Gingergrrl !

I definitely want to watch it and am looking forward to discussing it further with you guys! I might be able to watch it tomorrow (too tired to start it tonight) or later over the weekend.

Edit: Although it might just end up with me asking you guys more questions vs. having anything insightful to add

 

[Lalia]

I definitely want to watch it and am looking forward to discussing it further with you guys! I might be able to watch it tomorrow (too tired to start it tonight) or later over the weekend.

Edit: Although it might just end up with me asking you guys more questions vs. having anything insightful to add

Haha, we love your questions! They kick-start the best discussions. Please take your time though

 

[pogoman]

Not to rudely butt in as I've been gone awhile, but that's a really informative video.
Altho i'm not sure Dr Torgerson is correct in that rituximab kills all B cell production?
From researching it, rituximab kills B cells with the CD20 protein attached so I'm not sure that all of them are killed.
I am doing an infusion of it next Monday, I suggested it to my doctor and he had me do a B cell panel and some other labs so I am not at risk of getting something worse

PS Hi Gingergrrl, glad to see you are doing better!

 

[Learner1]

Altho i'm not sure Dr Torgerson is correct in that rituximab kills all B cell production?
From researching it, rituximab kills B cells with the CD20 protein attached so I'm not sure that all of them are killed.
I am doing an infusion of it next Monday,

I'd tried to get in to see Torgerson, but couldn't, so i can't ask. Maybe you can clarify for us during your infusion?

I suggested it to my doctor and he had me do a B cell panel and some other labs so I am not at risk of getting something worse

How did you decide Rituximab is the right treatment for you?

What would good or bad labs look like in making this decision?

Will you be getting IVIG with it as Gingergrrl has?

 

[pogoman]

I'd tried to get in to see Torgerson, but couldn't, so i can't ask. Maybe you can clarify for us during your infusion?

How did you decide Rituximab is the right treatment for you?

What would good or bad labs look like in making this decision?

Will you be getting IVIG with it as Gingergrrl has?

Short story, I've been both on IVIG and methotrexate at different times but it has not stopped the muscle necrosis and pain from the myopathy I've been diagnosed with.
My neurologist thinks I have the statin associated necrotizing autoimmune myopathy while the geneticist I've also seen since last year thinks its an unknown neuropathy causing muscle necrosis and spasticity.
The geneticist did suggest medicines that could help, I've been on oxcarbamazipine and flexeril this year and they've improved my symptoms.

But I have noticed this year that I'm losing muscle and strength in my leg which the neuro also noted.
Rituximab has had good reports for my myopathy so I suggested it and he agreed.
He did not agree last year which is why I went on methotrexate, now he finally is seeing my muscles wasting away.

In my research rituximab works by killing B cells covered with the CD20 protein as I mentioned before.
In some diseases like certain cancers and HIV, treatment can cause fatal complications.
So he ordered labs to make sure I am clear of them and to get baseline numbers for my B cells.
Its called the T, B, NATURAL KILLER CELL PANEL, FLOW CYTOMETRY lab test, everything looked normal except I have higher than normal CD20 B cells.
I don't know what that signifies so I will ask him the next visit.

I do not want to do IVIG again unless I really have to, I have managed to keep working at my job and it really interfered with that due to having to call in sick every month.

 

[Gingergrrl]

Haha, we love your questions! They kick-start the best discussions. Please take your time though

Thanks @Lalia and you are too kind! I am not going get to watch the video until this weekend b/c family staying with me on Thurs and Fri.

PS Hi Gingergrrl, glad to see you are doing better!

Thanks @pogoman and I had been very curious how you were doing and am glad to read your update.

Not to rudely butt in as I've been gone awhile, but that's a really informative video. Altho i'm not sure Dr Torgerson is correct in that rituximab kills all B cell production? From researching it, rituximab kills B cells with the CD20 protein attached so I'm not sure that all of them are killed.

You are not butting in at all! After hearing your update, I would love to chat with you further if you ever feel up to it. I have not watched the video yet but I think you are correct that Rituximab kills the B-cells with CD20 protein attached to it. I am not sure what percent of B-cells have this protein but when I did the Lymphocyte Subset Panel 3-4x (after Ritux), it always showed my B-cells to be at zero.

The panel lists them as CD19 (not CD20) and someone on PR once explained this all to me re: the life cycle of the B-cell but sadly I did not retain any of it

I am doing an infusion of it next Monday, I suggested it to my doctor and he had me do a B cell panel and some other labs so I am not at risk of getting something worse

Will the infusion on Monday be your first Ritux infusion? I can't remember if we live in the same city (and please don't post anything publicly unless comfortable!) but am curious where you will be getting your infusions.

Short story, I've been both on IVIG and methotrexate at different times but it has not stopped the muscle necrosis and pain from the myopathy I've been diagnosed with. My neurologist thinks I have the statin associated necrotizing autoimmune myopathy while the geneticist I've also seen since last year thinks its an unknown neuropathy causing muscle necrosis and spasticity.

I forgot that you had the statin connection and from what you wrote, I am assuming that your entire illness started after taking statins (or is this not true)? My entire illness started after having a neurotoxic reaction to Levaquin (antibiotic) but after 1.5 years I had recovered about 90% only to get severe Mono/EBV followed by moving into a rental with toxic mold and a few other triggers. Did you have several triggers in close proximity like I did or were the statins the only trigger? Do you agree with your Neuro vs. your geneticist? Sorry for so many question

Rituximab has had good reports for my myopathy so I suggested it and he agreed.

I am glad that you will have the opportunity to try it.

In my research rituximab works by killing B cells covered with the CD20 protein as I mentioned before. In some diseases like certain cancers and HIV, treatment can cause fatal complications.

I agree and there are many conditions in which it would not be safe like certain cancers, HIV, hepatitis, TB, etc.

So he ordered labs to make sure I am clear of them and to get baseline numbers for my B cells. Its called the T, B, NATURAL KILLER CELL PANEL, FLOW CYTOMETRY lab test, everything looked normal except I have higher than normal CD20 B cells. I don't know what that signifies so I will ask him the next visit.

That is interesting and I did not have that panel but I was tested to confirm I had no history of Hepatitis or TB and was negative for IgM and PCR for JC virus (which causes PML). Was the test you had at Quest or Lab Corp or from a specialty lab? I am not sure what the higher than normal CD20 B cells mean (except autoimmunity from my prior discussions w/ @Lalia about this general topic). I will be curious what your Neuro says about it.

I do not want to do IVIG again unless I really have to, I have managed to keep working at my job and it really interfered with that due to having to call in sick every month.

That is amazing that you have kept working! My career ended in 2014 due to this illness (I could no longer stand and walk from my car to my office among other problems) and then it got even worse in 2015. After (almost) 2 yrs of IVIG and 9 months of Ritux (my 6th Ritux infusion will be in Aug), for the first time, I actually believe that it could be possible to work again (not yet but in the future as I continue to get stronger).

Also, I wanted to reassure you (at least in my case), I never had any negative reaction to Rituximab but have had some brutal reactions to IVIG. IVIG always triggered a headache and neck stiffness/pain but often also triggered an immune reaction (feeling feverish, chills, malaise, nausea) and sometimes full body pain. It often depended on the batch and some were mild and others were truly brutal. But I would do it all again in a heartbeat to reach my current improvements. I just don't know what happens when I stop the treatments, although I will be doing maintenance Ritux infusions long after the IVIG is over (which will be soon).

 

[pogoman]

Thanks @pogoman and I had been very curious how you were doing and am glad to read your update.



You are not butting in at all! After hearing your update, I would love to chat with you further if you ever feel up to it. I have not watched the video yet but I think you are correct that Rituximab kills the B-cells with CD20 protein attached to it. I am not sure what percent of B-cells have this protein but when I did the Lymphocyte Subset Panel 3-4x (after Ritux), it always showed my B-cells to be at zero.

The panel lists them as CD19 (not CD20) and someone on PR once explained this all to me re: the life cycle of the B-cell but sadly I did not retain any of it



Will the infusion on Monday be your first Ritux infusion? I can't remember if we live in the same city (and please don't post anything publicly unless comfortable!) but am curious where you will be getting your infusions.



I forgot that you had the statin connection and from what you wrote, I am assuming that your entire illness started after taking statins (or is this not true)? My entire illness started after having a neurotoxic reaction to Levaquin (antibiotic) but after 1.5 years I had recovered about 90% only to get severe Mono/EBV followed by moving into a rental with toxic mold and a few other triggers. Did you have several triggers in close proximity like I did or were the statins the only trigger? Do you agree with your Neuro vs. your geneticist? Sorry for so many question



I am glad that you will have the opportunity to try it.



I agree and there are many conditions in which it would not be safe like certain cancers, HIV, hepatitis, TB, etc.



That is interesting and I did not have that panel but I was tested to confirm I had no history of Hepatitis or TB and was negative for IgM and PCR for JC virus (which causes PML). Was the test you had at Quest or Lab Corp or from a specialty lab? I am not sure what the higher than normal CD20 B cells mean (except autoimmunity from my prior discussions w/ @Lalia about this general topic). I will be curious what your Neuro says about it.



That is amazing that you have kept working! My career ended in 2014 due to this illness (I could no longer stand and walk from my car to my office among other problems) and then it got even worse in 2015. After (almost) 2 yrs of IVIG and 9 months of Ritux (my 6th Ritux infusion will be in Aug), for the first time, I actually believe that it could be possible to work again (not yet but in the future as I continue to get stronger).

Also, I wanted to reassure you (at least in my case), I never had any negative reaction to Rituximab but have had some brutal reactions to IVIG. IVIG always triggered a headache and neck stiffness/pain but often also triggered an immune reaction (feeling feverish, chills, malaise, nausea) and sometimes full body pain. It often depended on the batch and some were mild and others were truly brutal. But I would do it all again in a heartbeat to reach my current improvements. I just don't know what happens when I stop the treatments, although I will be doing maintenance Ritux infusions long after the IVIG is over (which will be soon).

I'll try to answer the questions in order , so much has happened the past couple years.

If the B cell CD numbers correspond to their age then it would make sense when they reach 20 no mature B cells.
I was test for the same diseases as you mentioned and they were all negative.
I'll try to copy/paste the B cell results.

CD3+ T CELLS % 41 % 56 - 85 %
CD3+ T CELLS 620 cells/mm3 669 - 2,286 cells/mm3
CD4+CD3+ T CELLS % 25 % 28 - 59 %
CD4+CD3+ T CELLS 378 cells/mm3 428 - 1,401 cells/mm3
CD8+CD3+ T CELLS % 17 % 10 - 35 %
CD8+CD3+ T CELLS 257 cells/mm3 176 - 608 cells/mm3
CD4/CD8 RATIO 1.47 >=0.90
CD19+ B CELLS % 39 % 1 - 37 %
CD19+ B CELLS 590 cells/uL 14 - 816 cells/uL
CD20+ B CELLS % 38.60 % 4.63 - 21.00 %
CD20+ B CELLS 584 cells/uL 66 - 529 cells/uL
CD56+CD3- NK CELLS % 11 % 2 - 26 %
CD56+CD3- NK CELLS 166 cells/uL 13 - 441 cells/uL

the last numbers in each row are the normal ranges.

Yes this will be my first Retux infusion, I have Kaiser so it will be at their hospital in SD.

I have had muscle pains for most of my life, I would tell my doc and they would say I'm just getting older.
But in 2011 I had really bad pain in my good foot (I'm an AK amputee so wear a prosthetic leg) when work was shorthanded and I worked a ton of overtime for a couple year then.
I'm a diesel truck mechanic so it is physically demanding.

I also have had super high triglycerides so for about 7 years in the 00's I took several different fibrates.
Around 2008 I stopped them because of muscle soreness.
In 2012 my doctor had me try two different statins, I could only tolerate them for a couple weeks before muscle pain all over started in.

In 2013 after bugging my doctor about the pain he did a blood CPK test and it was two or three times normal.
He referred me to a neurologist who did a EMG and nerve conduction test, he found a myopathy in my good side thigh.
So they did a muscle biopsy and sent it to UCLA, their judgement was that it was a toxic myopathy with no inflammation.
During that time I was on prescription pain meds and after trying different vitamins and amino acids I found that B2 and COQ10 helped a lot.

The first neuro wouldn't do much so I asked for a second opinion and started seeing the head neurologist.
He did start me on IVIG for 10 months and then MTX after my CPK didn't drop, I asked to try Ritux also but he said things weren't bad enough to risk it.
My symptoms just got slowly worse.

Last year he told me he didn't know what I had so I asked to see the muscle disease doctor in LA I had heard about.
So I went up to LA and found out Kaiser has a metabolic disease clinic there and I had a consultation with a geneticist doctor.
He did a thorough inspection of my limbs and eyes and mouth and family history that the geneticist I saw in SD never did.

He said I had an unknown neuromuscular disease causing muscle spasticity and suggested carbamazapine, it helped but made me too drowsy so I was switched to the current oxcarbamazipine.
He noted quite a few abnormalities of my body that indicated something genetic.
They did a neuromuscular panel and later a myopathy panel both done by Invitae, no hits for known diseases but half a dozen variants of unknown significance.

My neurologist disagreed that it was a neuropathy, he did another EMG and needle conduction test that showed myopathy in my thigh.
He blames all my other pain and muscle stiffness on carpal tunnel, I don't think that explains the whole body being stiff and painful at all.

About that same time I noticed I was losing muscle in the lower thigh of my good leg, I also steadily lost knee strength the past 5 years.
I saw him in May and he said he noted the muscle loss and agreed to Ritux treatment.
After a month of waiting for lab results I have an appointment, doesn't say who did the labs but as they are shown in my online account I think Kaiser did them inhouse.

I think the geneticist got the ball rolling, I think he is right theres something genetic going on, he also said judging from my labs I probably have a lipodystrophy causing the high trigs.
But he deferring to the neuro for now as he is my primary doctor, the geneticist wants to see me around the end of year to see how I progress.

Thank you for the reassurance, i haven't been this optimistic in a long time

 

[crypt0cu1t]

He was very dismissive about autoimmunity being a probable cause for my disease, some other patients had the same experience.
In the end my disease does seem to be mainly autoimmune driven......

Have you tested positive for any autoantibodies?

 

[Gingergrrl]

the last numbers in each row are the normal ranges.

Thank you for posting the tests but I didn't understand how to read or interpret them . The test I had (after Ritux) was the lymphocyte subset panel and it shows the B-cells (absolute and percentage) were all at zero which is the goal but I don't know much beyond that.

Yes this will be my first Retux infusion, I have Kaiser so it will be at their hospital in SD.

Best wishes and please let us know how it goes.

In 2012 my doctor had me try two different statins, I could only tolerate them for a couple weeks before muscle pain all over started in.

Wow, I didn't realize that you were on two statins. They are truly a horrible class of meds IMO. Did you have rhabdomyolysis from the statins?

He blames all my other pain and muscle stiffness on carpal tunnel, I don't think that explains the whole body being stiff and painful at all.

I almost have to laugh, that is so ridiculous after everything you have been through for a doctor to try to blame it all on carpal tunnel syndrome

Thank you for the reassurance, i haven't been this optimistic in a long time

I am glad that you are feeling optimistic and am really hoping that your future treatments go well.

 

[Learner1]

@pogoman Have you been evaluated for mitochondrial disease?

 

[pogoman]

Thank you for posting the tests but I didn't understand how to read or interpret them . The test I had (after Ritux) was the lymphocyte subset panel and it shows the B-cells (absolute and percentage) were all at zero which is the goal but I don't know much beyond that.

Best wishes and please let us know how it goes.

Wow, I didn't realize that you were on two statins. They are truly a horrible class of meds IMO. Did you have rhabdomyolysis from the statins?

I almost have to laugh, that is so ridiculous after everything you have been through for a doctor to try to blame it all on carpal tunnel syndrome

I am glad that you are feeling optimistic and am really hoping that your future treatments go well.

Thank you lots! the treatment went extremely well today
The nurse was concerned that I drove myself there, the protocol is zyrtec and intravaneous benadryl which can cause drowsiness.
I told her I take zyrtec every day and she agreed to hold off on the benadryl unless it was needed.
She was able to ramp the rituximab up to the 400 full rate and I didn't have any symptoms besides some mild itching of the scalp and back, the nightly neuro pain causes much worse lol
Was done in 5 hours instead of the 6.

So she was happy with the results and told me to let them know at the next infusion benadryl isn't needed and I should take the zytec no more than an hour before treatment.
I probably can double dose it too, I've done it before on bad hay fever days
For zyrec the upper safe dose is much higher than that.

When I got home I had a lot of energy more than usual, I went and got a haircut and some fast food and came home and spent a few hours in the garage working on car projects.
I also noticed I've been feeling starved and thirsty all night, ate a big high protein dinner and drinking fluids.

The other thing is I've noticed right now is my hands, foot and ankle are not hurting like they do every night no matter what.
Will know more tomorrow at work, maybe its placebo effect, maybe not.

I never had rhab issues, only high CPK.
But fibrates are also known to trigger myopathy and I was on them for 7 or 8 years because of the high trigs.
The geneticist ordered a echocardiogram last year I think because of the high trigs and possible genetic lipodystrophy.
But it showed no blockage at all, only enlarged left and right chambers because of my hypertension.
I think theres something genetic thats causing the high trigs but also protecting me from plaque buildup.
My daughter also has high trigs, she is going to do a kidney donation later this year for a close friend and she had to do a bunch of tests.

@pogoman Have you been evaluated for mitochondrial disease?

Kinda sorta, the 2013 muscle biopsy showed no mito issues like ragged red fibers and the few mito labs done were negative.
That aside, riboflavin B2 and COQ10 have been consistant in lowering the pain, when I've stopped them the extreme nerve pain comes back in a couple days or so.

 

[Gingergrrl]

Thank you lots! the treatment went extremely well today

That is great news!

The nurse was concerned that I drove myself there, the protocol is zyrtec and intravaneous benadryl which can cause drowsiness. I told her I take zyrtec every day and she agreed to hold off on the benadryl unless it was needed.

Wow, you drove yourself there and did not have the IV Benadryl for your first infusion?! I've never heard of such a thing . I don't do well in general w/Benadryl but for Rituximab infusions every three months, I do the IV Benadryl to be safe. I have MCAS and can become allergic to something even if I have been okay w/it in the past. At my first infusion, we had extra Benadryl, Solumedrol and an Epipen ready (but luckily I did not need any of it)!

She was able to ramp the rituximab up to the 400 full rate and I didn't have any symptoms besides some mild itching of the scalp and back, the nightly neuro pain causes much worse lol Was done in 5 hours instead of the 6.

Holy shit (excuse my language ) but you went up to 400 on your first infusion?! My maximum speed for Rituximab (all Ritux infusions, not just the first one) is 80 and the entire process takes me about 9-10 hours. But we take every safety precaution in the book b/c of my history of allergic reactions and third spacing/edema if the infusion speed is too fast.

I was curious what your dose is? Mine is 600 mg of Ritux in 600 ml of IV saline.

I probably can double dose it too, I've done it before on bad hay fever days For zyrec the upper safe dose is much higher than that.

It is absolutely safe to take more than one Zyrtec in a day and for three years I was taking two per day as part of my MCAS protocol. My MCAS doctor said that you titrate up to the needs of the patient (which does not pertain to you) but he had patients who had to take 4-5 Zyrtecs per day to help control allergic reactions. Now I just take one.

When I got home I had a lot of energy more than usual, I went and got a haircut and some fast food and came home and spent a few hours in the garage working on car projects.

How strange! I usually go out to dinner w/my friend or family member who took me to the infusion and then come home and go to sleep!

The other thing is I've noticed right now is my hands, foot and ankle are not hurting like they do every night no matter what. Will know more tomorrow at work, maybe its placebo effect, maybe not.

It's hard to say, and I'm leaning toward placebo effect and have never heard of someone getting improvement from Ritux that quickly, but maybe there was some other benefit that occurred? Are you doing the autoimmune protocol so your next infusion is in two weeks (and then the rest will be every three months)?

I think theres something genetic thats causing the high trigs but also protecting me from plaque buildup. My daughter also has high trigs, she is going to do a kidney donation later this year for a close friend and she had to do a bunch of tests.

Wow, your daughter is donating a kidney to her friend?! That is amazing and what a beautiful thing to do. You definitely raised her right!

 

[pogoman]

That is great news!



Wow, you drove yourself there and did not have the IV Benadryl for your first infusion?! I've never heard of such a thing . I don't do well in general w/Benadryl but for Rituximab infusions every three months, I do the IV Benadryl to be safe. I have MCAS and can become allergic to something even if I have been okay w/it in the past. At my first infusion, we had extra Benadryl, Solumedrol and an Epipen ready (but luckily I did not need any of it)!



Holy shit (excuse my language ) but you went up to 400 on your first infusion?! My maximum speed for Rituximab (all Ritux infusions, not just the first one) is 80 and the entire process takes me about 9-10 hours. But we take every safety precaution in the book b/c of my history of allergic reactions and third spacing/edema if the infusion speed is too fast.

I was curious what your dose is? Mine is 600 mg of Ritux in 600 ml of IV saline.



It is absolutely safe to take more than one Zyrtec in a day and for three years I was taking two per day as part of my MCAS protocol. My MCAS doctor said that you titrate up to the needs of the patient (which does not pertain to you) but he had patients who had to take 4-5 Zyrtecs per day to help control allergic reactions. Now I just take one.



How strange! I usually go out to dinner w/my friend or family member who took me to the infusion and then come home and go to sleep!



It's hard to say, and I'm leaning toward placebo effect and have never heard of someone getting improvement from Ritux that quickly, but maybe there was some other benefit that occurred? Are you doing the autoimmune protocol so your next infusion is in two weeks (and then the rest will be every three months)?



Wow, your daughter is donating a kidney to her friend?! That is amazing and what a beautiful thing to do. You definitely raised her right!

9 to 10 hrs at a time, that would kick my butt literally lol, glad you can tolerate that much.

I took a pic of the bag's label, 1000 mgs rituximab in 1000 mgs saline.
I do remember she injected a steroid after running the line, I think it was hyrocortisone so maybe that and the saline explain why I felt so good.
I'll know more by Friday, thats when the pain and stiffness are its worst after a week of work.

I guess I tolerate infusion more than the average patient for some reason, when I was doing IVIG they were able to ramp the rate up to where I was getting done an hour less than it usually took.

As far as I know this is the only infusion for now, I see the neuro next month so I'll probably do labs after that to see if its every three or six months.

Thank you for my daughter, she is a good kid and doesn't look like she inherited what I have

Oh, before I forget.
On my lab tests, each line is for whatever type of B cell they're testing for, then the next number is the result and the last two numbers dashed together is the range.
My CD20 B cell percentage was above normal at 38.60 percent and 21.00 percent is the high normal cutoff.

CD20+ B CELLS % 38.60 % 4.63 - 21.00 %

 

[Gingergrrl]

I guess I tolerate infusion more than the average patient for some reason, when I was doing IVIG they were able to ramp the rate up to where I was getting done an hour less than it usually took.

I am the opposite and require a very slow infusion speed. My very first IVIG (in 2016) was way too fast b/c the nurse ramped up the speed and did not follow my doctor's order who said that it cannot be faster than 8 hours. It was horrible and I ultimately ended up in the emergency room. With the slower speed, I have not had any major problems (beyond the standard IVIG headache and immune reaction).

As far as I know this is the only infusion for now, I see the neuro next month so I'll probably do labs after that to see if its every three or six months.

I know there are lots of different protocols. My doctor said the ME/CFS protocol uses 1000 mg (1 gram) for all patients vs. the autoimmune protocol uses the BSA (body surface area) formula which put me at a dose of 600 mg. I did the standard autoimmune protocol of getting Ritux on Day 0 and Day 14 and then every three months.

Thank you for my daughter, she is a good kid and doesn't look like she inherited what I have

I am glad that she is healthy, you must be so relieved! Hopefully you will be feeling much better soon, too.