Hi everybody and hope all is well in the Team. Now its not difficult to get me confused but I really could do with some advice on this one. I fully understand how Rituximab depletes “B Cells” therefore reducing possible responses to infections etc. I also know there are different types of B cells I.e. granulocytes (neutrophils, eosinophils, and basophils), monocytes, and lymphocytes (T cells and B cells), and Rituximab targets granulocytes/neutrophils which account for about 50% of WBCs. Now I had all my tests recently and my WBC Count was 6.7 which is still within the normal range of 4.5–11.0 x109/L.. My Consultant is pleased about my WBC Count and even more pleased about my ANCA level which is very low. I also seem to be able to fight off Colds and Infections quite quickly (touch wood)
Where my confusion is that I am repeatedly told my immune system is severely compromised and potentially have difficulty to fight of infections like colds, flu and Covid. You’ve all heard this Guys I am sure.
Can anybody shine any light on this? Does it mean I have a functional immune system?
Nick
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Hi Nick, the WBCs are made up of Neutrophils and Lymphocytes (and a few oesinophils and basophils) Lymphocytes are either T cells or B cells. Your B cell count will be very low 2 months after Rituximab.
So your normal WBC count is made up of Neutrophils and T lymphocytes.
Nick, yes we have a multifaceted immune system thankfully (but integrated in a complcated way with each part talking to the other). New antibody production from B lymphocytes are only one aspect of immunity.
We still have innate immunity with our neutrophils and macrophages and complement proteases which kill bacteria and also killer T lymphocytes. The latter effective against virus infected cells.
So Rituximab only affects one part of the immune system, but quite an important part. However, it does stop us producing ANCA 🙏
Glad you’ve got these good replies…just here to add that immunoglobulins’ levels (IgG, IgA, IgM) are also crucial to fighting infections of any type of. Some immunosuppression meds can cause IgG levels to drop. But, with your lab stats & meds, if you’re not getting persistence pattern bacteria driven respiratory system infections your IgG levels are probably within normal range
Hi Barnclown, I don’t know about my immunoglobulins, but I do know my Haemoglobin's are just in the normal range at 142 g/l, don’t know if that’s relevant at all. I get a cold probably a every 4-5 months (don’t we all) a lot of the time it’s very short lived, I can be sneezing and sniffling until bedtime on day 1 and when I wake up on day 2 it’s gone. Other occasions though if it’s been transmitted by my wife to me it takes about the same as it takes her to shake it off. Great answers there Barnclown, and because of the brilliant responses I feel a lot more infused with knowledge on the subject. Nick.
you’re welcome: v glad if anything is useful! A v few of us have primary autoimmunity simultaneous with primary immunodeficiency (aka the umbrella acronym PID …& I’m one), somewhat more of us have primary autoimmunity simultaneous with secondary immunodeficiency often caused by our immunosuppression meds (which basically is managed same way as PID). And some of us (again, I’m one) are old enough for natural age-related immuno-senescence to have kicked in.,..just adding to our clinical vulnerabilities to infections of all types
This is a link to our great U.K. PID organisation website …in case you’re curious/interested:
This has confused me too. My working theory (based on nothing scientific and purely observational) is that the immune system is one component to fighting infection, but your body is more than the sum of its parts and there are other factors that affect our ability to shake things off. Great immune system + stress = worse outcomes. Overall appear healthy + bad diet = worse outcomes. Severely suppressed immune system + low stress levels + good diet = variable outcomes depending on what you catch. If the right things seem to be balancing out at the time you get sick then you'll potentially be totally fine. If some things are off balance maybe not.
There's a lot known about how the immune system cells work together and their co-dependency on one another, but there's also a lot still unknown about how well they work in isolation if some elements are depleted, and the extent to which other comorbities and general health play a role in fighting infection.
Also with Rituximab it has statistically worse outcomes for Covid still, yet it has also been found to alleviate the symptoms in some people by dampening the cytokine storm, which can be one of the biggest contributors to severe outcomes.
So we're all individual but I imagine on top of the individual differences lifestyle, general health at the time of infection, stress levels, diet etc. all come into play.
a lot of good points in there as usual Grizzly. I do eat healthy and I like the odd treat and I like a few wines at a weekend but I do exercise, when I got back from Portugal I thought oh Heck ! Too many carbs but a couple of weeks keeping the carbs down and doing a few 5 mile walks has done the trick. Nick
I get confused too said that to my liver consultant he said whyI replied so many diagnoses being thrown at me my head in mucking fuddle what my late sister used to say I love her get cared for her all through her many illnesses we laughed to together kis & miss her so much that was 23 years ago my dad died young too asbestosis so mum & us 4 girls at risk mum because she washed his clothes in a twin tub & mangle. I used to sit on it so it didn't escape round kitchen lol
Without realising it my dear Dad taught me all about gardening whilst us girls played on swings my dad on his knees two big patches back garden front potato we never ever went hungry we were blessed to have good parents my mum strict but fair my dad used to pick us up in overalls & cuddle us. We decided not to sue for industrial disease won't bring our dad will it my rheumatologist is useless if he can't handle it retire! Can afford to money they earn astromical I don't have good bffs for nothing one never met I support her got problems much worse than mine & she is married she works for Lupus trust uk
Has met many times a professor in London who know his stuff I am offvto London to see him as said last chance for my local rheumatologist. Last time I saw him I said your playing with my life got up hobbled out. Not got annual appointment any more see him end of march. Bring it on cannot wait to hear what he has to say if he fobs me off again that's it off to London to see professor lots of hereditary stuff going on take after my mum for that never said love you louby she does now But I forgive her now won't forget it will I never a favourite child. Always my fault even when I wasn't bkoved child. I know more about my disease wicked it us keeps giving me big issues. Been private b4 not that cheap I can afford it now can't forevervthants to Sepsis Sepsis shock & legionella pneumonia
Keeps giving that kicked off my immune system is crap & I don't want to be fobbed off Gain. Going to email this professor He will have access to technology can be good can be bad. Good for keeping in touch with people you don't see I am retired now on low rate disability I use that to pay gardener ironing lady up the Rd my friend profession she is a good egg. Nutty one at that. Loves karaoke can't sing hubby loves it too he is better than her. She nearly lost him re heart attacks she resuciated him twice b4 ambulance arrived & whizzed him to local hospital its thanks to her he is alive I try to educate her on alcohol she is not listening popped a rare bottle of gin in with ironing my way of saying thank you wrong I know so does she. Not accepting my advice. Get that you only get one lifevas I very nearly found out thanks to my partner who came home from work cane in bedroom to ask me how I was feeling. I thought I had a virus or bug. I didn't intensive care saved me. Call my partner & two children into tell them to expect the worst. How traumatic it was for them you need counciling. Now both of them & David did they go no of coursevthey didn't my Daugher got a ba in clinical physiology decree yet she manipulates me try to contribute me just like ger father is is my Daugher
Controlling me again used to get on sorry if this offensb ssybitcasbitvall my life ne meed to go l. My
Eyes diving me grifu even though inherdvsomethinhvtonprotect them even though I use my drops during day & the glue on a night. Oh why oh why do I get nasty texts from my Controlling little sister. My nephew his partner joined in now. My sisters other son got mental health problems see why mother like that not surprising is it she has Vowed nevervto live with a man again good she has made her bed let her lie in it. Lost one sister didn't want to loose another end off re nasty messages & now my two children can guess with B can guess with b can guess withb3 nephews lost a niece last year 48 Heidi was had her stomach removed shevin a Dr in her own right but so so funny at times even at the very end of her short life. Wanted to be a postie she did & loved that job she was underca professor in addenbrooks. She was notvsilly but kept the sense of humour I take my health issues with a pinch of salt now. Dontvadd salt to anything now. If our Heidi can do it so can I laugh lots. Not at people with them all from toxic in France. Luckily David clashes with her big time I keep out of way his mother not mine thank god for that too. IVam sorryvuf ivhave confused you more I apologise for that am sirry I cant help you. I will pray 🙏 for you & cross fingers for you all I can do much love ❤️ & hugs 🫂
Your WBC rises when you have an infection. I had pneumonia before Xmas and my WBC was up even though my crp was only 58. My immunoglobulin levels are low caused by rituximab. These will be tested if you get a lot of infections. I have IGg replacement therapy like Barnclown. Barnclown has described immunoglobulin deficiency much better than I ever could.
Thanks Mooka. I suppose I have to come clean really, I am trying to put together a few questions for my consultant. I will see her in April but what I want to know is what kind of immune system I currently have. She told me in January that we are now at a crossroads in that I have had 24 months of Rituximab and that can be extended to 36 months but it’s up to me. I had my bloods done and I know they were fine but don’t know what my ANCA marker is but it’s expected to be below 2. If I can ascertain that I have some immunity, and I have a sneaking feeling I have as I seem to recover from infections quickly I will continue for another 12 months but if I hav’nt maybe it’s time to call it a day so I can get some immunity back. This might not make sense to some people but I have my own reasoning. My Consultant says that if I relapse, which she estimates at 30% possibility then it’s for life. It’s a dilemma that’s for sure. Nick.
I think you would know if you Rituximab had caused you major immunity problems. I had sinus and lung infections before I started on Rituximab. I had worse problems with these infections after just a few doses of Rituximab and it was paused for a while but then I flared. Another dose was given and I was in a terrible state. By then I had been diagnosed with bronchiectasis and had one infection after another. I believe the percentage of people that have this reaction to Rituximab is about 5%. When I was having the infusions, a few years ago admittedly the protocol was one yearly infusions after the initial two years. Something else for you to consider! I don't suffer badly from colds anymore either but I have a habit of the bugs going straight to my lungs. Good luck whatever you decide. I'm pleased to hear your consultant includes you in the decision making.
Thanks Mooka, you’ve had a bit of time of it that’s for sure and that’s an understatement. I have stayed clear of anything major whether that’s just luck or a reasonable level of immunity. I am not brave enough to put it to the test to be honest. On the 19th of January we were flying back from Portugal, this woman in front of us sneezed about 6 times in a row, she made no attempt to cover her mouth. In fact you could see the vapour. We were masked up, but I said to my wife the air conditioning will have that round the cabin in no time. The bloke next to her gave her a right ear full. Low and behold by the 23rd my wife had come down with a cold that turned into a lot of coughing and sneezing so it was inevitable that I would kop for it. And 2 days later I did, exactly the same symptoms, it lasted 7 days for her and 7 days for me, there must be something in me fighting it. When I caught COVID LAST June I did have Monoclonal Antibody treatment but the symptoms never really materialised. Nick.
Thankfully I’m pretty stable now. I had my first infection in 4 years before Xmas. No cold or cough just appeared. We’re all different in the symptoms we suffer and I feel luckier than some on here. I’m also lucky to have an excellent MDT to look after me. I do envy you being able to fly abroad though 🤔
I am lucky, very lucky that my symptoms were followed by diagnosis within a few months and therefore have not been affected regarding mobility. Risk is something completely different though when it comes to Covid (you will have seen the risk assessment for travelling abroad I posted last year) and I have sat and pondered many times regarding flying but it’s something when I retired that was my main goal, to see the world more. Covid meant we have probably cancelled as many flights as we have flown and some would say stupidly I took the risk. I believe that we are in a better place now but I am almost Howard Hughes like in my precautionary measures. I never travel anywhere where there is a low vaccination rate or high infection rate. I eat outside and stay in places that are self contained. Portugal just gone, Munich in March, Karlovy Vary in May and Rio (that’s the big one) in June. Law of averages says it’s a risk but I can’t live my life saying what if? If I kop for something it’s my own doing but that’s ok with me. Hope you keep progressing well and we will speak soon I am sure. Nick.
I did read your risk assessment with interest. I know that I have very few antibodies against Covid so feel is a step too far atm. I have just started a trial of Sotrovimab to see if that protects against Covid. As I had absolutely no side affects I think I probably had the placebo. Sadly it’s no cheaper that Evusheld so even if it does work I think it’s unlikely the government will fund it. Enjoy your holidays. They sound brilliant.
Hi Mooka I had Sotrovimab in June, I did have some quite nasty side effects, the body pains were the most painful I have ever experienced, or was that the Covid. Don’t know. Nick.
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