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
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, 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
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