Rituximab: Hi all you lovely people who responded to my... - NRAS

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Rituximab

Lorrayne profile image
16 Replies

Hi all you lovely people who responded to my question re Rituximab, well I have just returned from the hospital and am unable to report how I got on as they didn’t do it !! I was sent for a chest x ray on arrival, I have an area of fluid in one lung, so am now awaiting a CT scan and then a sample of fluid to be drawn from my lung to find out what it is and why it’s there. Umm not looking forward to that one !! and I thought I needed to be worried about RTX infusion !! Is it too early for wine ? I let you know x

16 Replies
Lolabridge profile image
Lolabridge

Oh bad luck. Hope that can be sorted soon. No it’s never too early for wine! 🍷

springcross profile image
springcross

I'm sorry to hear that Lorrayne, I hope it's nothing to worry about. x

AgedCrone profile image
AgedCrone

My Grandmother always told me me “A glass of wine will settle your nerves”! She knew what she was talking about ….she lived until she was 97 and was active until the last day of her life!

Hope the CT scan is clear…then you can have another little tipple!

Lorrayne profile image
Lorrayne in reply to AgedCrone

Hahaha bless her, the laugh is don’t actually drink but taking your grandmother’s advice I think one glass wouldn’t hurt x

ks1966 profile image
ks1966

Good luck next time :) I was wondering why did you do the chest x ray. Was it part of the infusion protocol?

Lorrayne profile image
Lorrayne in reply to ks1966

Hi I’ve no idea actually!!! Well I’m assuming it’s because I do get short of breath, worse after methotrexate day, previous scans have shown I have RA nodules and I have bronchiectasis proven to be caused by the RA and have had a few bouts of pneumonia and pleurisy, prior to Rituximab they do check for any previous TB infections I understand from their booklet. So that possibly answers the question, however I would have thought they would have done these scans and X-rays before making the apt ?

ks1966 profile image
ks1966 in reply to Lorrayne

That’s true. To do them on the infusion day is odd. But it’s great that they did the x ray. It would have caused some issues if you took Rituximab and had an infection. Actually is was a very good precautionary measure by them and I’m surprised they did it. Rituximab is an amazing medication but makes us people who take it vulnerable to infections. All they ask when I take my infusion is if I have have a cough? :)))

AgedCrone profile image
AgedCrone in reply to ks1966

Rituximab doesn’t necessarily cause infections…except it seems in those who have previously been prone to infection.

I have been on it for 6 years & I haven’t even had a cold.

Even these last couple of weeks with Hayfever…it’s nowhere near

as severe as I have experienced in the past…just sneezing & itchy eyes,

no sore throat & earache.

So anybody waiting to start on Rtx …..don’t anticipate problems…most do

really well on it.

ks1966 profile image
ks1966 in reply to AgedCrone

Thank you for your feedback. I was wondering if you know whether Rituximab effects B memory cells , the ones that generate antibodies in case of an infection. ? Google wasn’t of much help to me. Thank you again

AgedCrone profile image
AgedCrone in reply to ks1966

Rituximab induces full depletion & reduces activity of B cells in the peripheral blood & bone marrow ….although mostly the Mature Cells repopulate…. Memory Cells can remain depleted for sometimes 1-2 years…but they can survive for years.My Peripheral cells once depleted virtually overnight & I did feel a bit fluey…but the Rtx still worked it’s magic & I had no lasting side effects.

I’m on Rtx mono therapy….No Mtx & No steroids and I have had no serious side effects..I did have Shingles, but I got the anti virals within hours & I only had it very mildly.

Right now I’m due an infusion any time afterJuly……but thankfully although I’m having some RA symptoms ……I’m usually virtually symptom free…I’m not having to take any DMards.

As long as I’m not in pain & no joint damage appears I’m quite relaxed…but I will be on my rheumy’s doorstep if I get more than a twinge!

Lorrayne profile image
Lorrayne in reply to ks1966

Hi not sure of the complete science of it all but below I have copied exactly what is in the booklet given to me by rheumatologist.“The immune system works by protecting the body from infections, it does this by causing inflammation, but in some conditions a group of cells in the body’s immune system , called B cells, make proteins which attack the body’s own tissue by mistake. Rituximab fights these B cells which reduces your pain, inflammation and swelling. If Rituximab works for you you’ll probably start to feel better after about six weeks”.

So, I think our memory cells are different and so that’s why we still get our jabs for pneumonia flu and covid, but I’m by no means an expert ! It’s like I asked if I still had to take Methotrexate when I started Biologic medication and the answer was yes because it’s works on a different part of the immune system.

I hope this helps x

Pulfs profile image
Pulfs

Sorry to hear your news hope all goes well. And wine cures all 🍷🍷🍷

Lorrayne profile image
Lorrayne in reply to Pulfs

I still need to pour a glass !

Sarmita50 profile image
Sarmita50

These drugs so many side effects. I hope it will sort out soon. Love Love Lorraine.

Paisley58 profile image
Paisley58

Sorry to hear, wishing you all the best and it's never too late or early to have a glass of wine 😃

ZiggyZebra profile image
ZiggyZebra

I wonder how you have got on with this as I have had to be off my methotrexate and benepali due to chest infections and having fluid on the lung. I hope you are ok.

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