Just how immune suppressed are we?: Good morning all... - NRAS

NRAS

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Just how immune suppressed are we?

Bon1 profile image
Bon1
9 Replies

Good morning all

Just reaching out to all the expertise amongst us. I read a somewhat depressing study result this morning suggesting very poor covid vaccine response amongst transplant recipients. The person in charge of the study suggests at the end that this could be extrapolated out to people taking dmards biológics etc for auto immune conditions. Typical me I’m now feeling glum and worried, but was Wondering whether our levels of immune suppression are similar? I always thought the transplant patients would be on much stronger drugs.

Can anyone help me get my head around it?

Thanks!

Bon

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Bon1
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helixhelix profile image
helixhelix

Your immune responses are very individual, so a massive difference between people even if they don’t have RA or take drugs.

But yes, transplant patients take huge doses compared to us, as do cancer patients.

I am on MTX and a biologic and I don’t view myself as immune suppressed at all, just slightly immune compromised. And it’s pretty clear that my immune system functions relatively ok.

- I often get cuts and scrapes from gardening, which I clean properly these days, but they heal about as quickly as they used to.

- Husband got norovirus 🤑which he passed on to me, and I recovered in 24 hours. He took days. (2nd person infection is sometimes weaker tho’)

- I rarely pick up coughs and colds and if I do they are pretty normal, maybe take an extra day to recover.

My rheumy told me to be careful not to let anything get out of hand, so go to doctor if signs of infection to get antibiotics sooner rather than later, but otherwise not to worry. I bought a new thermometer just in case and have never used it in 2+ years on biologics.

Bon1 profile image
Bon1 in reply to helixhelix

Thanks for such a thoughtful response HH. Funnily enough I seem to get “normal person ill” less since being on these meds. Or maybe I’m just not drinking and going out as much! 😂

Hezekiah profile image
Hezekiah

Perhaps if you were able to post a link to the study you read it would be helpful?

Bon1 profile image
Bon1

medpagetoday.com/infectious...

Thanks Hezekiah that’s a really good idea. Hope this works!

helixhelix profile image
helixhelix in reply to Bon1

It’s very clear that the disappointing results relate to transplant patients who have just had one vaccine dose. And he does say they are at less risk of dying than previously thought - which is also what seems to be the case for us too. It’s other factors like age and comorbidities that are more critical.

This is sad for them, but I really don’t think we need to worry too much. There are studies underway doing antibody testing (which i think you can also pay to get done privately at some clinics in London) so hopefully more relevant info will be available soon.

Seconding Helix’s stance regarding transplant patients and those receiving chemo: my understanding is that RD patients are not suppressed anywhere near to the same extent. To put it in perspective using methotrexate, most RD patients are on no more than 25mg a week. To treat Lymphoma, a patient of my average size would be receiving anything between 5670mg and 11,340mg of mtx per infusion. With doses like that, even a common cold can be a really major issue for patients in those categories. I also agree that the rest is all relative, in so far as I would have said I was extremely robust prior to starting treatment, despite having a number of health problems, on average only getting one or two colds a year that even if heavy were short lived. I was started on DMARDs last Jan, originally just mtx, then leflunomide on top from the April, and since October I’ve had 7 viral infections, each one making me feel really ill, each one lasting at least a week, but usually closer to 3, and each one ultimately going to my chest. Bar going into hospital with my daughter, and medical appts generally, I’ve been strictly shielding since last March, but have still managed to catch viruses seemingly out of thin air. Look back through my blood results from all the med changes, and my white cell count has steadily fallen since the lef was introduced from the top end of normal to only just above the lower limit of normal, along with lower limit of normal levels of lymphocytes and intermittently LLN basophils and eosinophils. I stopped mtx almost a month ago now due to it not working for me, and my white cells and lymphocytes last week were still only just within normal, confirming that in my case, lef demonstrably alters my immune response. But it’s ‘only’ been viruses, and I have recovered spontaneously, even if it’s taken me longer. I’ve not had any bacterial infections, and plenty of other people take lef without issue, so it ultimately boils down to my own personal immune response.

Bon1 profile image
Bon1 in reply to

Thanks Charlie. That is hugely frustrating for you and i sincerely hope you get on to a med regime soon that causes you less problems. I appreciate your reply. Yes a stark difference in quantity of those drugs. My white blood cells etc have always stayed in the normal range thus far so maybe that is a positive sign in terms of vaccine response.

Good luck and thanks again

Bon

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helixhelix profile image
helixhelix in reply to

I think our WBC levels are pretty good marker for immune system robustness, and lots of drugs and illnesses can knock them on the head. Despite a ton of drugs (fingers crossed) mine have stayed resolutely at the top end of the scale. And my thermometer remains in the cupboard...

(Actually I remember now I did get a cold in the autumn - again no idea where from as that week I had not seen or been anywhere. Didn’t last long tho’.)

Bon1 profile image
Bon1 in reply to helixhelix

Long May your thermometer remain unused! Thanks again for the time and thought you have out into your replies.Bon

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