I read somewhere that taking RA immunosuppressants and/or systemic steroids stop the body showing a high temperature with an infection ?
I asked my RA consultant but he did not confirm, he sidetracked and said that they look at other symptoms also. so I could not get a definitive answer to the question..
this has worried me somewhat, I wondered if other people have noticed this actually happening
has anyone got any experience or knowledge in this matter ?
whenever I see the gp about a suspected infection, they always ask 'do you have a temperature?'
I have never had a serious high temp, despite many problems, even when an ovarian cyst exploded and I was in serious pain and had to have emergency surgery, still no serious temp, a mild elevation overnight that was all....
many thanks
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lindyloo2018
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Yes, Biologics and Jak inhibitors etc can. This has been confirmed to me a few times by the Rheumatologist. My GP is also very aware and are cautious even if my temp goes to 37.2. Normal temp around 36 for me. I mentioned to Rheumatologist I had been having issues with fast heart rate and she said that is often the first sign of infection for some people. I had a few infections last year (confirmed) no temp just fast heart rate and dizziness.
Obviously everyone is different and some may react as normal.
Don’t worry about something you cannot control. If you know your normal temperature you will know if it is raised. …but what is normal differs with everyone. My norm is 33°c…..that is apparently unusual, but it’s fine for me.
Many of us here have been taking immunosuppressive drugs for 20+ years, & we are all still here. ….so I don’t think you need worry that taking them will cause you any problems.
I would imagine it’s another of those questions that will get a different answer from everyone. Hydroxychloroquine and mtx aren’t like biologics affecting your immune system, mtx brings your immune system back to that it should be, not suppressing it further. I’ve just had covid and had a temperature but that’s just me. We are all different in the way we react to everything.
I've had a few illnesses and have only really realised I was ill when I started to feel better. It seems to creep up on you and you discount it as a flare or an off day until you get really sick. High heart rate is definitely one.
A few years ago my GP was amazed that I was going to work and functional with a heart rate of 120 and horrendous bloods. Quite funny, told him I couldn't go to hospital for iv antibiotics I had a dog ceasarian to do. 🙈...he gave me tablets.
I've had cellulitis quite a lot, just getting over a bout. Now realise haven't felt well in about 6 weeks.
I would push your Rheumatologist for a definitive answer I was on Tocilizumab for 10 years and was told it hid inflammatory markers. I had an inflamed gallbladder and they did not believe anything was wrong it was only when I had an ultrasound did it confirm that the gallbladder was inflamed. After that I carried a letter which confirmed this lack of normal response to inflammation/infection and I felt safer.
I have been on Tocilizumab since March 2020. I could not tolerate Methotrexate, as my RA was still not well controlled and deterioration was progressing at a fast rate Hydroxychloroquine was added. However this still didn’t help in controlling my RA. So the rheumatologist prescribed Sulfasalazine…. I still have not taken this as I am unable to swallow such a big tablet…. Have problems swallowing small ones, I was not warned of the size before it was prescribed and I received the tablets. Another waste of money.
What I find infuriating is that my RA specialist keeps telling me my inflammation markers are low although the disease keeps on progressing rather fast to the point I am now in much pain (my whole body and using my hands is most difficult and excruciating ( so living alone isn’t easy to cope with simple basic things) and I have lost my mobility and independence. In 2020 I could still walk, do some modest gardening, clean my house and chop vegetables and prepare food stuff, cooking from scratch every day. Can’t do this now. So quite a drastic change.
Therefore I wonder why so many RA consultants (and GPs) seem to be unawares that biologics actually hide inflammation. What does one do to get this fact recognised and obtain a letter or something going onto my notes to warn any other medical professionals? This is worrying.
Of course RA is a difficult disease to treat and there are no miracle cures but when such basic facts are not acknowledged by rheumatologists, it becomes worrying. When they don’t know they somehow push the questions away… rather than trying to find an adequate answer from researchers, Best wishes.
Definitely true in my case. I've had a severe infection in my hip replacement and my temp wasnt raised or any other signs etc in bloods. My temp was showing at most 37 but it seems mine is normally 36. Thanks to not working out what had happened it's took a lot to clear it, including 15 days iv antibiotics and I'm now coming to end of 12 weeks oral ones afterwards x
I knew someone who was on prednisone and Imnuran who had a normal temperature with a severe blood infection. She died. I am on leflunimide and I know this was used on Covid patients to help curb their immune response. I am on cosentyx also. I bet if I ask my doctor your question she’ll say it just depends and won’t give me a definitive answer.
I have been taking Biologics, methotrexate and hydroxychloroquine for a couple of years now and what I can say is you are more prone to infection and it can develop more quickly. I also take full round of paracetamol each day which definitely suppresses temperature rises. I am more reactiv to symptoms of infection and my GP has me on a list of immune suppressed people and reacts far more swiftly to any contact I make. Make sure your GP also knows / is on your record that your temperature does not raise in the usual way. Good luck 👍
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