Any pointers on what is expected when one contracts an infection while on immunosuppressant tablets?
Does one not get any symptoms or does it take longer to recover ? More importantly, does the infection affect the efficacy of the immunosuppressants?
The most significant side effect of immunosuppressant drugs is an increased risk of infection, so you can catch things more easily and be sick for a longer period. I cannot see why it should affect the efficacy of the drugs though.
Depending on the infection, I have come off of my immunosuppression meds to help fight the infection alongside antibiotics. As piglette notes, you will get more infections while on immunosuppressive therapy. I have young kids and it is very hard to manage. I still mask up in populated places like their elementary school as an example. Mostly now I stay on my weekly injection of methotrexate unless it is something like pneumonia that is bacterial. For your every day ear infection, stomach infection, UTI, etc, I stay on the therapy. It will always take longer to get better unfortunately.
you should speak to your consultant to see if you should stop taking the immunosuppressant whilst the infection is treated. I’ve had 2 operations recently and have been told to pause my cosentxy injections whilst the site heals to aid recovery and also help fight any infection.
Hi Udupik. I can only go from my own experiences. I am currently undergoing 6 monthly infusion of Rituximab and have been for 2.5 years so I am about at the most vulnerable you can get.
I can’t say I pick up more infections but I can say if I do it’s usually from my wife and they are generally colds. The Colds go one of either 2 ways. The less severe is I come dome with runny nose, sneezing and sore throat in the afternoon and as the day progresses get worse. I go to bed and wake up as if nothing has happened. Weird I know. That happens about 50% of the time.
The more severe is I start the same as above but I can feel it on my upper chest, sore and grated. It’s never gone on my lungs as such (touch wood) and over about 2 days my vest gets better but my sneezing and coughing gets worse but generally breathing temperature (37) and oxygen levels are good at around 98%. I also feel pretty rubbish. Then after about 3 days I start coughing green gunge and it either lasts a couple of weeks and lingers or like the one I have just had a week exactly.
I can’t say it’s any more intense symptoms wise than before I had treatment, maybe a bit less but probably a bit worse how I feel. If I do come down with something I get the bike out or get on my cross trainer and have a good half hour to take it on and clear my lungs and generally build my endorphins up.
That’s me. Hope it helps. Nick.
Thanks for this Nick
when I get an infection I display the same symptoms as I would without immunosuppressants. Depending if on what it is/severity I’ll contact my GP - I dread it because I have to pause the methotrexate in order to allow the antibiotics to do their work, and that could potentially have repercussions (a flare up) - but as they say, an infection could potentially be life threatening and so they must treat that as priority. I had a run of infections a couple of years ago but generally I probably get them no more than the girl next door.
I think (my mind is clouded so I may write this wrong, someone will correct me I’m sure) - that if you take antibiotics whilst on immunosuppressants then they won’t work effectively (the antibiotics) and the infection would potentially get worse, which is why they’re paused - it’s interesting that I read that some people aren’t told this by their doctors and yet I’m reminded by my consultant/GP and pharmacist whenever I pick up antibiotics, so I would definitely ask the questions that you’ve written on here to your medical professionals - it could be that there are different guidelines for different people
Hi Rhonda57, I have never been told this. I was told by my GP that antibiotics are a good option if I got a throat/chest infection while on Rituximab. I don’t know whether some immune suppressants work differently in conjunction with antibiotics but I will still take them if the time comes,
Yes it does appear that there are different guidelines for different people Investigator1 - (and when I read posts I see that Riituximab is wildly different to methotrexate, so maybe it’s in part, down to what immune suppressant you take - interesting though - I wish I could carry on taking mine whilst on antibiotics, the fear of a flare up is always high on my list of concerns when I have to stop taking them for any length of time.
I hav’nt got a choice Rhonda.probably best that way, it simplifies it really. Nick.
I do stay on mine and the antibiotics work just fine. The cold or flu may last a tough longer, but we only come off for things like pneumonia. I was asked to come off for a surgery last year but for different reasons. Here is an article from John's Hopkins. Here it lists the antibiotics that contradict and should not be taken together. This is total preference for someone. My symptoms returned so quickly after stopping methotrexate and one of my autoimmune disorders can't go into remission.....so stopping essentially advances my one of diseases each time. I've also attached primary interactions with methotrexate and I was just shocked to see NSAIDs. I know many folks use them to supplement for pain. I am allergic.
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strangely we have our family ( 3 year old granddaughter) living with us and while we all had chest infections my OH had nothing at all! He is on MMF only at the moment. He also avoided the D& V bug ( he did keep to his own bathroom etc)
He was told by his consultant that it’s not unusual as sub consciously you keep away.
Seems everyone is different.
evening it takes longer to get over infections I always need antibiotics you have to be patient
Hi, I've had occasional infections but no more so than others, since being on immunosuppressants. When I have, the advice from my Consultant has been to stop the immunosuppressants and increase the steroids until the infection has cleared, then restart.
I think it probably depends which immune suppressant you are on and how well your disease is controlled. I’m on aziathioprine and a low dose of hydrocortisone steroid. When I get ill I double my hydrocortisone - which I have been advised to do- and usually come off my aziathioprine which suppresses my immune system until I feel better. My consultant is of the opinion that I should only stop taking aziathioprine if I’m on antibiotics- my GP doesn’t agree. To me my GP makes more sense as it’s difficult to fight infection and illness when your immune system is being suppressed. If you are unsure I would get guidelines from your GP or consultant.
it works fine. I’ve been on it for over 10 years now so any side effects I had I can’t remember. I’m on 75mg a day now. My consultant said we reduce further but I haven’t seen her for over a year. Below this level there is a risk of flare so she is being very cautious. I was told I would eventually get off aziathioprine so that’s my aim.
One other thought, for viral infections, I have been given an antiviral for COVID a few times. Much of the medical contradictions are related to the ability for your body to handle and excrete the methotrexate or other immunosuppressant. I tend to stay on mine for mild infections with antibiotics. I have been given the lower renal dose of Paxlovid which is for COVID virus. I know we are talking a lot about bacterial infections, but we shouldn't forget about viral infections and what we can do to protect ourselves. I monitor my blood work every two months. Once my liver enzymes shot up at 25 mgs weekly MTX injection, we came down to 15 mgs and started the use of LDN as well. This seems to be keeping all of my autoimmune issues at bay for the moment. I also tend to stay on MTX because my own immunity is poor. So skipping MTX in hopes that my body can hack it....well that has yet to be determined. We just constantly check liver and kidney function.
Ongoing fatigue post chest infection 
Chest infection?
Dental work while rituximab & mtx
