Being immunosupressed

[megsyp]

Are all people taking dmards severely immunosupressed. I am sure I read an article that not all of us are. Dmards suppress your immune system to a normal one so I only take one dmard, Leflunimide, and don’t class myself as immunosupressed. Am I wrong

[MadBunny]

I'm not 100% sure but I was under the same impression. As I understand it, our immune systems are over active with RA so the meds bring it down to a relatively ' normal' level. I take methotrexate plus a biologic . My blood test results always have readings within the normal range, as I am , theoretically ' in remission'. Maybe worth checking with your rheum team if you're not sure 🤔

[Hidden]

Short answer: yes, you are immunosuppressed, but you wouldn’t be considered majorly immunocompromised or severely immunosuppressed as you put it. Longer answer?

As a word, immunosuppressed literally means the immune system being suppressed as a result of taking medication. If you have an overactive immune system causing problems, then suppressing it is a good idea. However, the immune system is an extensive and complex thing, and at this point we can’t suppress just one bit that’s overactive whilst leaving the rest alone. Therefore, immunosuppressants taken for RA have an impact on all aspects, including the working ones, not just the haywire bit(s). This in effect means that the normal functioning parts of our immune systems may potentially function less effectively, and is why anyone taking drugs for RD is advised to watch for signs and symptoms of infections, and why various blood cell counts are routinely monitored during treatment. What drugs you take, and how many you take, will impact on the degree of immunosuppression you have, as well as individual biology person to person, but that means how suppressed people are will vary, even if they’re taking exactly the same drugs and dosages.

In terms of traditional DMARDS like mtx etc., these are not as immunosuppressive as biologics tend to be, but leflunomide is still considered by medics to be a potent immunosuppressant. I took it for almost a year, and found that I very frequently got viral illnesses, and when I did, it would take weeks for them to go in a way I’ve never had a problem with previously. I’d normally have 2 or 3 short-lived colds annually, but despite strict shielding, between October and March I had about 7, all of them lasting around two weeks, all making me feel pretty horrific, and all ultimately going to my chest afterwards. My white blood cell count consistently reflected that lef was significantly dampening my normal immune response, and since stopping it in March, I’ve gone from only just normal levels of white cells, to top end of normal, which is where I was pre-treatment. However, that doesn’t mean to say those taking leflunomide are severely immunocompromised, and very few people with arthritis would fall into the the severely immunocompromised category as a result of their treatment. That’s normally a category reserved for people like those that are receiving chemotherapy, or those who are post transplant whereby they need to prevent rejection of a donor organ.

[helixhelix in reply to Hidden]

Nice answer, but you also need to factor in that immune systems are very individual and we each have a differently active one. I am on MTX and Enbrel and really don’t consider myself as anything more than very very slightly immune compromised. And the dosage of drugs also affects things. 200mg of hydroxy will not have much of an effect on immune system.

In 11 years I have hardly caught anything, and when I have I have responded pretty much the same as I used to. My blood tests show good levels, particularly WBC. And at one point I was on Hydroxy, sulpha, MTX, Enbrel and two antibiotics for latent TB and the levels didn’t even twitch.

OH ate dodgy oysters and got norovirus, which he passed on. It’s usually milder in person no.2, and it was. I was better before him..... I get lots of cuts and scrapes, and am carful about cleaning them, and nothing more than pinkness.

I don’t say this to show off, but just to say that people are different and if WBC levels are good then one is probably pretty ok and of course should stay careful, but not worry too much.

[bienassis in reply to helixhelix]

Hello helixhelix

Your reply, and that of Charlie-G are comprehensive and give a good explanation of the effects of drugs on the immune system.

Experience makes so much difference to the understanding of how our individual bodies react to these powerful medications. No two people are the same.

I have been taking MTX for 23 years and have never had any problems with it; but when I started in 1998 I had no idea whatsoever about the drug and it's possible side-effects!

Now, since March 2020, I also have a biologic - infliximab- but I'm much better informed about the possible problems.

Ignorance is not bliss! Thanks to this forum and its posters, and the NRAS, we all have the opportunity to keep informed of the pitfalls, but also the advantages, of modern medicines. On the whole, doctors know most people are more informed than they used to be and are willing to listen to, and answer, queries.

And yes, as you say, keep an eye on your blood tests; keep copies - and don't hesitate to ask about anything that looks very different from usual.

[arvine in reply to Hidden]

are PMR people taking prednisone, immunesuppressed, and does it matter the dosage?

[helixhelix in reply to arvine]

Prednisone does suppress. And it is dosage related, so whether the low daily maintenance dose has an effect I don’t know!

[Froggie70]

Had a conversation with my GP this morning as after 8 years on MTX the nausea and stomach pains are getting worse. Whilst on the call I asked about what kind of immune response I might have mounted post 2 jabs of AZ vaccine (appreciate the fact that most things are an unknown at the moment). He said that MTX is now being thought of as a drug that causes more immunosuppression than first thought and might cause problems with mounting a sufficient immune response. Suggested I get an antibody test although again no one knows how reliable these are. I was never told to shield but he says in retrospect that was a mistake. Just as well I did it myself.

[helixhelix in reply to Froggie70]

Big difference between MTX interfering with vaccine response, and MTX increasing your risk of serious covid! Not the same thing at all, as dat seems to show people on DMARDs like MTX are not more susceptible.

[Froggie70 in reply to helixhelix]

Hi Helix. Not according to my GP, said with hindsight anyone on only MTX should have been shielding as it did make you more susceptible according to updated info he had seen.

[helixhelix in reply to Froggie70]

Well some of the big studies are due to report quite soon, so then there should be enough data to make some sound conclusions. Right now it still seems that different studies are producing conflicting information.

I”m happy not to have been asked to shield! I still think shielding was more about protecting the NHS than the patients, and they put thousands and thousands too many people through a hell’ish 18months.

[crashdoll in reply to Froggie70]

It seems like information is changing. Biologics don’t seem to be a significant risk factor for Covid, in fact, it may be protective.

I’ve heard mixed views on MTX because of how it works and that it can be more immune suppressing than other drugs. However, that said, even a low-ish long term dose of steroids has been considered to put a person at higher risk of covid complications than someone on something like MTX and a biologic!

I honestly don’t think there is a consensus. A 20 year old female on 15mg MTX has a different risk profile to a 70 year old male on 15mg MTX.

Everyone has to consider their own situation.

[helixhelix in reply to crashdoll]

Yes, steroids seem universally to come out as being a potential problem. As for the rest we need to wait.

[Neonkittie17 in reply to crashdoll]

I agree that it depends on the individual. Also that many GPs often don’t fully understand the RA medications. That’s no disrespect as my doctors have said it themselves. I would say it seems to depend on your age, comorbidities and side effects the meds may give you. That is very much my case re side effects/condition caused by the med. My biologic has lowered my immunity to the point I shall always be CEV if I’m on it. I think the Octave study info must be due very soon now. x

[HappykindaGal in reply to Froggie70]

I had a spike protein antibody test. Anything above 0.8 is positive. I was 252. The GP spoke to the lead virologist at UCL about the result who said globally, scientists are still interpreting the results so there’s no definitive answer, but 252 was a strong response. I had Pfizer vaccs and take mtx and benepali.

I feel more reassured, particularly as I run business meetings and my first in person one is next week.

[Neonkittie17 in reply to HappykindaGal]

That’s good news indeed. I had a result in May which wasn’t so, but I knew this as I’m on Rituximab and don’t always repopulate my B cells so fast. I managed to time it exactly as was advised .. had my first Pfizer six months after my previous Rtx and still no antibodies. My med lowers igG. As you say and as was told to me from the technicians who did my Roche test, they don’t know as yet what number is deemed the ideal to have. Only that a higher number is better.

[sylvi]

I am classed as immunesuppresant and i had the letter from the gov/ drs to shield . xxx

[Leics]

If I was you I would ask your docs what your last immunoglobulin results were as that would give them more of an idea whether you are considered immune suppressed or not. We are all different I’m in the unfortunate position that my immunoglobulins are in my boots and probably always will be now, this was due to rtx which I had many years ago. Still having said that I’m reasonably healthy and I’m not currently having immunoglobulin therapy as although I don’t have a working immune system persay I don’t get too many infections. My RA isn’t controlled either so technically you could say that it’s running riot still so some part of the immune system is working 🤷‍♀️ Very complex subject. But in my opinion one size definitely doesn’t fit all.

[Neonkittie17 in reply to Leics]

Similar happening here at the moment. IgG dropping down. Side effect of Rtx. Glad you haven’t had to be on ig permanently. I’m having more in depth immunology bloods done at the moment. I’m not sure if some non permanent ig booster would help me but hoping to speak with an immunologist very soon.

[Leics in reply to Neonkittie17]

Yeah hopefully it doesn’t come to the IgG replacement because there is a major shortage of it and it’s very expensive so funding is an issue dependant on where you are in the country. I’ve had funding denied twice but I’ve managed without and to be honest if I can keep myself healthy without too many infections I think for me it would be less intrusive in my lifestyle. I hope they’re going to monitor you properly I certainly wasn’t so that’s why my immunoglobulin will never recover. I have had prophylactic antibiotics for a while which certainly helped but unfortunately didn’t mix with the JAK I was on at the time it’s very tough to get options sorted as far as treatment is concerned but think I’ve finally got a new plan after two years of nothing. Good luck with any luck your immune system won’t be at the point of no return so will only be temporary 🤞hope so for you.