how bad have your viral infections been since startin... - NRAS

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how bad have your viral infections been since starting methotrexate (or other immunosuppressant)?

tanya1981 profile image
38 Replies

Hello lovely people,

I have been on methotrexate for 4.5 months and I seem to be fighting my first viral infection while on an immunosuppressant. I’ve been with high temperature (around 38) and dry cough for 16 days now. Been to the GP twice but they continue to think it’s viral. I’m worried though as this has persisted for so long and I wonder if there’s something more sinister with my autoimmune conditions (I have 2-3 of those,RA being one) that’s underneath this.

How long has it taken you to shake off viral infections and could there be something else behind this fever that we falsely attribute to a virus? My chest and throat are apparently clear and I have no referral so far.

thank you for your thoughts and ideas!

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38 Replies
bpeal1 profile image
bpeal1

I afraid I don’t have any suggestions other than contacting your rheumatology team and asking their advice.

tanya1981 profile image
tanya1981 in reply to bpeal1

yes, unfortunately they’ve been unresponsive for more than a week… apparently very understaffed but that’s been their response for more than a year

AgedCrone profile image
AgedCrone

You have been unlucky….I was on Mtx for 7 years & I didn’t even have a cold.Not everybody picks infections on Mtx…give it another week or so & then ask your GP for a blood test ..but it will probably have subside by then.

tanya1981 profile image
tanya1981

that’s reassuring - I hope I get a bit of your luck then:) thanks for the suggestion

Neonkittie17 profile image
Neonkittie17

Mtx was my sole RA med for many years and I never had so much as a sniffle on it. When Rituximab was added I never had any problems for 4 years except one acute case of a 48 hour Norovirus but that was an elderly confused lady in my Mum’s care home touching my face and breathing on me, to find out that she had got it the next day and that evening I discovered I also that I had also had it! 😖 I recovered quickly from that.

It was after 4 years of being on such a high level med as Rtx when my immunoglobulins G & M were showing as low/hypogammaglubulinemia on my blood tests, that it it was no surprise I’d get bronchitis every other month. Still suffering, but prophylactic antibiotics 3 times weekly are controlling it and I changed to another biologic as Rtx was too problematic on my immune system. (Rtx depletes B cells and without these your antibodies don’t proliferate enough into Ig’s (immunoglobulins/antibodies) to fight off viruses etc. ) Not everyone is affected the same way. Some people can get infections from the start of being on an RA med, or be like me and several years in they start to have problems re low immunity, or some don’t have any issues at all. I hope this is a one off and you are steady soon.

ks1966 profile image
ks1966 in reply to Neonkittie17

hi there. Can you please help me understand more about Rtx and how it affects the immunoglobulins etc. I’ve been on it for almost 2 years now and haven’t got a clue. Also do immunoglobulins play any role in your immune defences or is it just t. cells and b cells. I do IGG tests 2-3 months after my infusion When I asked how where they I was told they’re normal. Can they be normal without any b cells in circulation I’d really appreciate all the information you may know. Thanks a lot

Neonkittie17 profile image
Neonkittie17 in reply to ks1966

Rtx depletes your B cells each time you have an infusion so that the RA remains inactive and controlled. The B’s can take up to 12 months or more - as was my case - to repopulate but usually 6-12 months. Without B cells you are usually more susceptible to more infections. Not everyone is as severely affected with infections or low Ig’s. Vaccines don’t tend to work for many immunosuppressed people on meds like B cell depletors also, as you’ll have read and heard re Covid19 vaccines and people especially on biologic immunosuppressants, but also Rtx can reduce efficacy of the flu and pneumonia vaccines. It did for mine. Basically it takes the immune very low at times when you’ve just had your infusion especially.

Plasma cells are differentiated B lymphocyte cells capable of secreting immunoglobulins (antibodies.) Antibodies bind pathogens (viruses/bacteria/microorganisms which cause diseases) and mark them for destruction before they can infect cells.

Your B cells/B lymphocytes are made in your (red) bone marrow and mature into the lymphatic system and then become immunoglobulins (ig’s/also called antibodies) with the assistance of T helper cells (CD4 cells), triggering them to cascade and proliferate, producing lots of antibodies, so B’s & T’s are reciprocal. T cells are made in bone marrow too and mature in the Thymus.

I have found an article linked below with an easy to digest diagram and without so much science speak as that takes a long time to get your head around. Hope this helps but try googling ... easy explanation of B cells and antibodies, etc .. or you’ll get all the scientific info which isn’t too easy to follow when you don’t know immunology terminology.

The fact you’re allowed to continue with Rtx and your rheumy is looking regularly at results and saying all is ok, then all is ok! They’d not be allowed to give you Rtx if you had constant low igG under 6. I hope Rtx is working well for you. It gave me the most mobility and zero RA inflammation than any other RA med. Lack of B cells is usually synonymous with low ig’s as they simply can’t convert over to become an antibody-igG especially. The low ig count can improve over time as B cells increase if you stop having Rtx, but the B cells don’t always mature from naive ones into the igG/immunoglobulin/antibody. It can take time too .. sometimes a couple of years to get igG back to a decent level. (Sometimes too it doesn’t ever get back to the normal level and stays very low.)

Please do ask your rheumy any specifics as they can refer to an immunologist if you want answers they don’t have/always know. Please note I am no expert whatsoever but have had to learn for my own Rtx/hypogammaglobulinemia (low Ig’s) issues and asked a lot of questions to my immunologist.

askabiologist.asu.edu/b-cell

ks1966 profile image
ks1966 in reply to Neonkittie17

thank you very much did this priceless information. I really appreciate it 👍🙏

Neonkittie17 profile image
Neonkittie17 in reply to ks1966

you’re welcome

ks1966 profile image
ks1966 in reply to Neonkittie17

one last question 🙈. Let’s say I caught Covid now, 2 months into my infusion. Would normal immunoglobulins make a difference in the outcome ? To the best of your knowledge please

Neonkittie17 profile image
Neonkittie17 in reply to ks1966

Sorry, I’ve no idea on this at all. 🤷‍♀️

ks1966 profile image
ks1966 in reply to Neonkittie17

thanks

Neonkittie17 profile image
Neonkittie17 in reply to ks1966

I will say that in theory you are more susceptible to any infections at 2 months post Rtx rather than just before/close to your next infusion. As we know there has been a lot written about T cells and their protection. I’d ask your rheumy this question but at 2 months post Rtx it’s not likely your B cells are going to be back by then. (Or if they never got depleted then Rtx wasn’t working.) It’s all so individual so I’m sorry I just don’t know.

ks1966 profile image
ks1966 in reply to Neonkittie17

I have a telephone consultation early April. I hope I can an answer from them. You know how these go :)

Neonkittie17 profile image
Neonkittie17 in reply to ks1966

I do think as I said that they’d not let you have Rtx if your igG was too low and they have told you it’s alright.

ks1966 profile image
ks1966 in reply to Neonkittie17

I hope so too

tanya1981 profile image
tanya1981

thank you Neonkitty - let’s hope it’s a one off indeed and there’s not much else behind it

Neonkittie17 profile image
Neonkittie17 in reply to tanya1981

I hope it’s soon gone and is just taking a bit longer in this cold weather to clear. If your GP has listened to/examined your chest and throat then it’s not developed into anything chesty. They’d hear on the stethoscope. I hope plenty of rest sees it on its way and you back on track very soon. If it feels worse at any point don’t ever feel you can’t go back and ask the doc what can I do to alleviate this, etc. Also, What about a humidifier or air purifier? (I have a UVC/air cleanser in my lounge and bedroom.) Also salt water garbles are good for a dry cough.

tanya1981 profile image
tanya1981 in reply to Neonkittie17

I’ve been thinking of an air Cleanser - I should probably investigate as living in London certainly doesn’t come with lots of clean air..

Neonkittie17 profile image
Neonkittie17 in reply to tanya1981

I can well imagine. 😑 When we were last in London a month before lockdown the smell and taste of congested/high traffic areas started to get to me after a few days. Same with Paris. Great to visit though.

The UVC ones cleanse/recycle air and just don't simply trap it. They are pricier though. They also claim to destroy pathogens and viruses as the UVC does that to them. I sleep better when mine is on and they have had all the safety testing done by the inventor/manufacturer and cost very little to use.

KittyJ profile image
KittyJ

I’ve been on mtx for 25 + years and now a biologic too and haven’t had any increase in colds etc apart from covid. Have you tested yourself? Probably a daft question.

Mtx apparently suppresses your immune system back to what it should be normally but of course you would still get viruses with a ‘normal’ immune system too so maybe nothing to do with mtx and you’ve just been unlucky. Get well soon.

tanya1981 profile image
tanya1981

yes, tested myself twice already for Covid and is negative….. good to hear from so many of you that you haven’t seen an increase in infections while on methotrexate. I might be unlucky or it might be something else

nomoreheels profile image
nomoreheels

I don't recall having a viral infection in 14 years of MTX. I think I can count on one hand how many colds I’ve had, & they've not really been any longer than I had before diagnosis. I've never had flu either (have the vaccine each season), or Covid but againhave had all my vaccines/boosters. One thing that may have some effect for you is that you have more than one autoimmune disease, I only have RD. As such I’d take it up with each of your Specialists, see what their take on it is.

I hope it doesn’t linger & you feel brighter soon.

Sheila_G profile image
Sheila_G

I have been on mxt for almost 21 years and had fewer colds or viruses than I ever had before it. Coincidence? Who knows?

Seatgeorge profile image
Seatgeorge

If you contact the RA nurse she may suggest you stop your mx for a week, there very clued up on that sort of thing, my gp has suggested the same when I had a very sore chest, good luck.

Bails67 profile image
Bails67

I do find if I am every ill it can take a bit longer to clear up. Although I am on a biologic and I am hardly ever poorly, I haven’t even had covid.The immune suppressant should be rebalancing your immune system, as having RA means it’s over active. I have no idea if it makes any difference but I try and have plenty of garlic and vitamin c especially during the winter months.

Runrig01 profile image
Runrig01

You need to liaise with your rheumatologist. MTX can cause inflammation in the lungs, which can present with fever, cough as well as shortness of breath. I was told by my rheumatologist when I started to let him know immediately if I developed a cough. It’s associated with causing pneumonitis. I have been on it over 6yrs, and rarely get infections. Please speak with them , and hold next dose till they’ve advised.

tanya1981 profile image
tanya1981 in reply to Runrig01

thank you! This is definitely useful info I wasn’t aware of! Unfortunately, my rheumatology team (including nurses) have been unresponsive in the last week:(

Hustler profile image
Hustler

Hi I have been on Mx for almost 1 yr for Psa and before that I was very prone to heavy colds leading to chest infections then antibiotics, meaning one heavy cold averaged at least six weeks. A month ago my 10 yr old grandson (who lives with us four days a week ) came home sneezing coughing and feeling feverish. He dutifully passed it first to his dad then my husband and last but not least to me. I didnt stop my Mx once and felt terrible but within two weeks it was gone just got a few after effects of coughing a bit but hey no chest infection at all. I know we are all different but being on Mx certainly didn't hinder anything in the virus line for me. Good luck,

Cheylann profile image
Cheylann in reply to Hustler

Sorry to jump im but is it working for your psa and if so how?I was on 15mg injections for 8 months and didnt notice much improvement in my tendinopathy im elbows etc.

Hustler profile image
Hustler in reply to Cheylann

Hi it has helped a lot in my finger joints and stopped any more distortion in knuckle joints and they are no longer tender, but my feet were worse and it doesn't seem to have helped with them at all. I have very bad nail psoriasis (fingers and toes ) which are no better but scalp and ear P has disappeared. Sorry forgot to say I am on 10mg tablets. I could go higher I know but lost lots of hair when I started on Mx and have fine hair anyway so desperately don't want to lose any more, Hope this helps.

oldtimer2 profile image
oldtimer2

It could still be a viral infection - they often last at least two weeks before your body overcomes them. But if it persists past three weeks, or gets worse, then you need to go back to the GP.

bienassis profile image
bienassis

Methotrexate is only mildly immunosuppressant - although if you are taking a high dose, say, 20mg, that might be different. I wonder if you are taking any biologics. You do mention other autoimmune diesases.

The best advice is to consult your rheumatology team - but your first recourse might be your GP if the hospital team is not easily accessible.

Best Wishes - bienassis

Mmrr profile image
Mmrr

There is a cold virus going round just now which seems to be lasting 2 weeks or more. It can be quite nasty.I'm on oral prednisolone, Filgotinib and leflunomide, my cold wasn't as severe nor lasted as long as my partner's who isn't immunosuppressed.

If you don't improve soon, it might be worthwhile asking your GP for more assistance.

Happy5 profile image
Happy5

I'd say fewer issues with infections, even before Covid I got them occasionally, but was looking after the grandson 2 days a week. Then Covid upped everyone's game about hand hygiene etc, and again not too many infections even when the grandson started school.

I've always had my seasonal flu jab, and of course have vaccines and boosters for Covid. Bigger problem was flares due to not taking MTX while vaccines and boosters did their thing.

Even now I'm going out and about I endeavour to social distance, use antibac gel, wash my hands regularly , careful who I socialise with and infections not too frequent.

Alozz profile image
Alozz

Hi, I also developed a dry cough at time my psa started and I was put on the mtx. it lasted at least 4 weeks. my rheumatologist and gp saw me 5 times during that period. Both concluded it was unrelated. I had a chest x ray while investigating the psa and this showed nothing. it's gone away although this could be due to steroids. They both say don't worry if will pass.

Paisley58 profile image
Paisley58

Sorry to hear and hope that you get well soon. I'd say contact your Rheumy and see what they say, hopefully they can offer some help.

Over the years, whatever the combination of drug therapy I have been on, once I come into contact with someone with a cough or cold eventually I will get sick. I was never like this, before R.A and Sarcoidosis I never got the flu, colds once in a blue moon.

Now, I pick up infections at the drop of a hat and have to be quite careful. I think it's the luck of the draw. I have noticed they do linger and take quite a while to go but I guess that's the price 🤷‍♀️

tanya1981 profile image
tanya1981

thank you all for sharing your experience. It did turn out to be viral pneumonia after all so no surprise I was so wiped out and with fever for so long! Antibiotics have kicked in and making a difference

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