Hope everyone has had a reasonably pain and bug free festive season. I haven’t been on the site much as I’ve been quite poorly for the last three weeks with this flu/virus/whatever that’s doing the rounds – I’ve never had anything this bad in my entire life, and still suffering some of the grotty symptoms!
What’s worrying me is whether this is a sign of things to come with methotrexate. I started on it around the end of May 2017, and since then I have had several infections: in August I dropped a heavy glass topped table on my foot, breaking three toes and losing a toenail, which led to me developing cellulitis which needed three lots of antibiotics to clear it. Since the beginning of November I have had a minor cold which cleared up quickly; an infection in my parotid gland which needed antibiotics; a tummy bug that lasted a full week; and now this virus which has just totally wiped me out since 18 December. As part of that I developed an inner ear infection for which I’ve just finished another course of antibiotics.
As you can imagine, I’m feeling quite sorry for myself and wondering whether it’s worth being on MTX if this is what it’s going to be like, considering I was previously relatively healthy, with maybe just one cold a year. I’ve been fortunate not to experience any side effects on MTX, although it does seem to intermittently affect my liver results enough to get my GP in a bit of a paddy while still being within the hospital’s acceptable range.
The immunosuppressant aspects of DMARDS was one of the things that held me back from taking them for some time, given that my psoriatic arthritis presented as only occasional flare-ups, sometimes only once a year/18 months, albeit these flare-ups were excruciatingly painful and no amount of painkillers helped. During 2016 though, the flare ups were becoming more frequent and affecting more than one joint at a time, and the prospect of the disease causing damage to my joints while not actively flaring convinced me it was time to start medication. However, now I’m not so sure….
Has anyone else experienced this level of susceptibility to infection on MTX or have I just been unlucky? Perhaps I could have done more to protect myself – although I naturally recoil from anybody coughing or sniffling, and wash my hands frequently, I haven’t been actively taking any other particular protective measures. Are there any ‘top tips’ for avoiding infection, eg are hand sanitiser gels worthwhile and are some better than others?
I’m due to see the rheumatologist on 16 January and trying to collect my thoughts on whether I should continue on MTX and would really appreciate any words of wisdom from the group!
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Soreknees2016
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Sorry to hear about your problems with infections.
I've had RA for 15 years and a chronic bladder condition for over 3 years. More than a year ago my rheumy and I decided to stop taking all immune suppressing medication, including steroids, because of of frequent recurring urinary tract infections, two of which became serious requiring hospital stays. Since stopping the meds, was on methotrexate at the time, I have not had a single UTI. I would have had at least three during that time when I was on immune suppressors.
Might be wise to have a chat with rheumy about it on the 16th.
I started methotrexate in the spring of last year too. I've had to stop it twice because of infections as each time my lymphocytes dropped to outside the normal range. Was very reluctant to have a third attempt last week but staying on lower dose now until I see the rheumy. A new years resolution for me is to find out what my blood results are before taking my mtx. I have to say though mtx works wonders on my RA. Just a fine balancing act. Good luck.
I'm a veteran of MTX & can't say I've been more open to catching bugs, infections or any nasties any more than before I was diagnosed. I'd recommend talking to your Rheumy about the concerns you have though, you need to be really sure if MTX is working that there's enough supporting your concerns of coming off it because it's not particularly suppressive, not like biologics. If you are more susceptible the longer you remain on DMARDs the better if you understand, given that with the next group of meds you'd certainly need to be much more careful.
I carry a hand sanitizer in my bag to use whenever I've opened the outer door of public loos, hand rails on stairs etc., no specific brand just whichever is available in a shop whenever I run out. I don't go overboard bug-wise, I just avoid anyone coughing or sneezing, I've been known to skip an aisle in a supermarket if someone's coughing!
I would recommend the annual flu vaccine if you didn't have it & if your Rheumy ok's it the pneumonia vaccine, particularly as you're just now recovering from something nasty. Whilst MTX isn't a big suppressant having RD, or in your case PsA, means our defences could be lower than they were before diagnosis, our immune systems aren't what they were.
I hope you start to feel a whole lot better soon. A friend of mine always used to have a really nasty bug around Christmas time & her (& my) GP always put it down to her running herself ragged preparing for Christmas, I think there maybe some truth in it.
I once moved carriages on a train because someone close to me was coughing and snotty and, more than anything else, it was turning my stomach!! 🤢
I also used to get colds at Christmas time, but blamed it on too much drinking, late nights and partying in the lead up. That’s not the case nowadays though as, since I took early retirement seven years ago, my social life has diminished quite a bit, and even if I am out, I don’t tend to drink much. How things change as we get older!
Will write a separate reply regarding what I’ve taken from everyone’s replies. x
Sorry to hear. Not much fun. I'm on antibiotics for a chest infection and should have been on them last month but was denied them. New doc. I'm not impressed as when I went back last week one of the regular GPs said .. Lowered immunity and On Rituximab and Mtx so should have been on them early December. Instead I coughed all through Christmas. I can't say that Mtx has ever made me noticeably susceptible to any more viruses etc. I seldom get any respiratory infections but I do think that Rituximab has made me get a few infections or tummy bugs because I see so many people quoting it as causing sinusitis and bronchitis. It's hard to call as you don't know if you'd get them anyhow without the immuno suppressant meds. I did get UTIs after each of last two Rituximab infusions but it was summer and I do tend to dehydrate easily too.
Would you say you have been painfree and mobile since taking Mtx? If you stop it your symptoms/arthritis will come back after a month or so. Then a whole load more problems. Hope your rheumatologist can help you. Good luck.
I had a similar experience a couple of months ago...started what I thought was a cold the week after 2nd dose of RTX infusion ( just RTX no Mtx) ....been on it since April 2016 & have had no infections at all....I couldn't remember the last time I had a cold....so when I started coughing & wheezing ....I had never had a cough in my (very long) life before....I saw my GP.....who asked if I had RTX infusions every month (Dah)......after I explained she prescribed antibiotics.......they did the trick & the bug cleared up within a week, so it must have been a bacterial infection......but I don't know if it was reduced immunity from the RTX, that caused me to catch or if it was just my turn to get a bug!
I would add I was on Mtx for 7 years & had no problem with infections during that time.....I am reasonably careful about trying to keep away from people coughing & sneezing.....but apart from locking the door & hibernating ....what to do?
Same here. Rituximab definitely has had me at a low ebb the last twice but not from 2014 to 2017. Maybe also really unlucky the people we've mixed with. My husband is now forced to use public transport for a portion of his journey each day and he has had many colds and flu. I keep seeing stats online about the percentage of RTX patients with issues relating to respiratory infections so maybe they would happen anyhow. I didn't have a cold but think a bacterial infection in my sinuses started as they've been awful, then it either progressed to the chest or I got a secondary bacterial infection at the theatre. I have never wheezed like that. Still on antibiotics which have improved it a lot but I feel I may need another lot of antibiotics. I'm hoping they can prescribe something else as these have made me feel really awful. I'll stick with them another week if I have to but I read they cause depression/anxiety and even worse very quickly and they certainly make me feel like throwing up. My ribs and stomach ache from all the crazy coughing. I should not have been left to let it go do downhill and should have been prescribed ABs over a month ago. Can't turn back the clock but will insist they listen to me next time. I've been on Mtx over ten years. Never an issue with picking up germs, apart from the lady in my Mum's residential who touched me all over my face and hands and gave me the Norovirus 5 years ago I just don't tend to get much apart from seasonal sinusitis which isn't too bad normally. I used to strictly seclude myself at home for a month after the Rtx infusions but this time as it is Christmas I've been out and about. Taxis are culprits too as the drivers always work when they are ill sneezing all over. I think gloves in winter are great so you don't touch doors and press buttons etc and I tend to try and pay for things by card so there's not money coming back from potentially germy sources. We can live in a plastic bubble at home and be safer but most of us want to get out there in the world and do things. Difficult indeed. It does seem worse in winter. All those winter bugs and many people not bothered if they cough and sneeze all over.
Thank you - my PsA tends to only flare up very intermittently, so fortunately I’ve not had any issues yet, having been off MTX for three weeks now - fingers crossed it stays that way!
I can't say that I am any more susceptible to bacteria and viruses....in fact OH got the cold that was going around just before Christmas and passed it to me. And he had a much worse time of it than I did. And that has been the same throughout the 7 years I've been diagnosed.
But I am generally healthy. I look after myself, so try not to get over tired or stressed and eat and exercise properly. If you have been having a tough time this year with other things it could perhaps have had an impact?
Also if you were only diagnosed in May are you still living exactly as you were beforehand or have you made any compromises? For me it was sleep...Pre-RA I slept on average 6 hours a night. Now I know that if I have less than 8 hours I will become ill/flare/or just feel totally rubbish for days. Which is not to say that people with RA should consider themselves as sickly creatures, but just that we do need to look after ourselves a bit more carefully.
Yes I am quite crocked too without 7 & 1/2 to 8 hours' sleep. My ankles swell too if I don't get enough and everything feels locked up so enough sleep is crucial for RA. I lost a lot over Christmas. Five hours for many nights. Not surprised my chest played up/got an infection. My diet is usually excellent but I've had so much caffeine and sugar given to me over Christmas at people's houses (oh you don't want that sissy coffee do you?! (Strange kind of attitude and yes we were with family morons!) I can't stand the thought of sweet food at the mo. As you say HH .. No need to think of oneself as an invalid but exercise, diet and sleep .. and as little stress as possible. I fall foul with stress and flare ups. I believe it brought my RA on in 2006. So indeed I believe that you need to make modifications to ensure you are giving yourself the best chance of feeling well.
I use sanitiser and aware of others spluttering as nmh says they do above. I have also found poor sleeping and external stresses affect me regarding picking up infection. Im on methx, sulph, hydroxy etc etc. Its a hard one. Have a good chat at your next appointment and see what they say as well. Thats what I would suggest.
I’ve been on mtx 20 + years. About 3 years ago I gave up gluten oats rice and corn, dairy, sugar alcohol and nightshades ( potatoes, aubergine, peppers, chilli) eating only fruit, veg, poultry, fish, meat, and plantain.
Since then I stopped getting infections.
There are other ways to support your immune system eg getting good quality sleep ( not easy I know) exercise daily and reducing stress.
Thank you for the link. I'm cutting out a lot and am lacto free and very little bread normally. Have had some toast this week as it's the only thing I can stomach but it doesn't seem to have bothered me. I'll leave it when my appetite returns. I eat potatoes but none of the other nightshades or oxalics. Very little red meat and no caffeine and cut right back on the sweet things. It usually keeps me very steady.
I’ve only been on methotrexate for about 2.5 months now and have 2 pretty bad colds since...the most recent one still has a lingering cough 3 weeks later. I’m hoping it’s just a coincidence and an overall sick winter season for everyone and not just the MTX. I see my rheumy in February and will ask him about it then if i get anything else in the meantime. Hope you feel better soon!
Best thing yo do when on immunosuppressants is
1. Give everyone with so much as a sniffle a wide birth
2. Wash your hands religiously when cooking, before food and when you'e been yo the loo 🚻
Thank you for all your very helpful comments, much of which I have taken on board.
What has really made me stop and think though is the point made by helixhelix about my general recent level of health. Despite being diabetic, overweight and generally unfit, I have always thought of myself as being healthy, in that I have a ‘robust constitution’ and keep well on a day to day basis, only ever suffering from an occasional cold (as seldom as once a year).
However, looking back on the last 5/6 months, I can see that things have changed. My diet was never exemplary, but I did make some effort to eat sensibly, and I exercised in fits and starts. When I broke my toes in August, I was wheelchair bound, unable to stand/walk much for several weeks and was unable to cook proper meals. I live alone, so was relying on the easiest things I could prepare and carry to the table in my wheelchair: cold foods, sandwiches, low liquid ready meals and increasingly regular home delivery takeaways. Since then, not much has changed! While my repertoire of easily prepared foods has increased, I am still not cooking ‘proper’ or in any way balanced meals, and fruit and veg remain strangers to my kitchen!
With regard to exercise, it has taken a long time for my toes to heal and I still have some pain and discomfort, so am reluctant to walk any further than necessary, and perhaps I am using this as an excuse not to do so!
I have also been a poor sleeper for a few years now (carry over from my menopausal days?), and this is possibly not helped by not having to get up to go to work, so I tend to faff about until late at night then can’t shift myself in the morning, which develops into a vicious circle and ends up with me suffering regular bouts of insomnia.
So all in all, I can see that my general standard of health and well-being is bound to have deteriorated over the last few months, which along with the immunosuppressants has probably contributed to my susceptibility to bugs.
This has been quite a lightbulb moment for me, and the good news is that with some determination, it is something I can change. Aside from doing something positive to improve my health on mtx, I also have the incentive of an extremely posh family wedding coming up in July, and was already thinking about how I’m going to get in shape so as not to look like Jabba the Hut in the wedding photos!
So thank you helixhelix for steering me in the right direction! 😀
The other aspect of the situation is avoiding other people’s bugs, and again that is something I can take positive steps to change by simply using sanitiser when in public places and using public transport, as I do frequently. I also realised that until recently, the weather hadn’t often been cold enough to wear gloves, but that’s something else to bear in mind, along with avoiding anyone remotely germy.
I now feel a lot more positive about continuing with mtx, but of course I’ll still talk all this through with the Rheumy next week.
Thanks again to everyone for all your help and support! xxx
Well good for you! However instead of facing this with "determination" could you perhaps think of it as just being nice to yourself? So treating yourself to a nice vegetable based meal, or a swim followed by something interesting, tucking yourself up in bed early with some soothing music, those sorts of things? The more you can make following a healthy lifestyle pleasurable the more you will folllow it. Good luck!
(Which is not meant in a patronising way at all! But sometimes we don't put ourselves first and I think you need to)
You’re absolutely right, and the other thing is to make changes one step at a time - going hell for leather, all or nothing, is a recipe for disaster as I know from past experience! 😀
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