I used to hardly ever get sick, hardly ever catching anything, but have had loads of allergies for as long as I can remember. I was what some people would call a "carrier". People around me might catch stuff, but I rarely would catch something at all, or if I did, it was very mild compared to others. Yes, immune system on overdrive, I know now. It's been a little over a year since the Rheumatologist said He thought that my immune system issues could be RA and I went on plaquenil. A scan 8 weeks ago confirmed Dr's initial thoughts. Finally caught a flare up and had a scan. I had decided that the lack of improvement, actual continued progression of RA warranted me discontinuing Plaquenil. The reward was not outweighing the risks. Dr. switched me to methotrexate. I am barely starting to feel a little relief from RA pain, but now I'm sick for the 2nd time in 2 months. Once the first week after starting mtx, and now. I still feel like the additional improvement that I might feel down the road is worth taking mtx.
However, it still makes me wonder how often I should expect to catch something?
I totally scrub down everything. I rarely leave our property, as there's not really a big need to for me. I work from home. I wipe carts at the store and just generally take all normal & some abnormal precautions to prevent catching whatever bug I come in contact with. Every bug seems to also trigger a flare right now. It's a 1-2 punch. Sure RA, kick me when I'm down. I'm making light of it, but it really does feel like a bit of a sucker punch at the moment, and I'm having a hard time turning "catching everything" and then being so worn out that I have a flare up into a positive in my life.
I will accept it, but part of that for me is wondering how often I can reasonably expect this result of coming in contact with the contagious, since I watch my grandkids and my own kids work in a restaurant, a clinic, is EMS, and teacher. I'm unwilling to avoid them, as I feel that most incubation periods are before symptoms show, so it really wouldn't do that much good. I will have already be exposed, UGH!
This is also affecting my work schedule. Even though I'm self employed, if I can't find the energy to get up and work, then work doesn't get done. Now what? When do you know you need more help?
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jessquilts
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In 7 years on Methotrexate, hardly ever! Maybe one cold which my OH had far worse than me. I am sensible, so regular hand washing, but otherwise take no precautions at all apart from annual flu jab. I spend time with snuffly kids, on public transport etc etc so it's not that bugs have no opportunity to find me.
However I do look after myself, so make sure I eat a well balanced diet with a wide range of foods to give all the trace elements I need, and have my vit D checked every 6 months (it's always low). Exercise & sleep also important to stay healthy.
Until this year i never caught anything. Now this is my second dose of something since June. I find my health goes through cycles,i can have a year when nothing happens then another year everything that can happen does. I have just had my flu jab so that is one less worry for the winter.xxxx
I teach 4 and 5 year olds and I catch lots, although it is getting less. They sneeze and cough all over you and forget to wash their hands so it's understandable that I catch quite a few colds. I do have the double whammy of mtx and a biologic suppressing my immune system though. I always make sure I wash my hands before I eat and after the children have gone. I also have the flu jab. The first cold you had after starting was probably a coincidence as mtx doesn't get into your system that quickly. Like most of the drugs it will take up to 12 weeks to make a difference to your RA. 😷
Between my underactive thyroid and RA diagnosis which was 20 years I rarely had a cold even if I was surrounded by people with colds. I would always say it's due to the many colds I had one after the other before the thyroid diagnosis.
I work in an environment where I'm exposed to infection but didn't appear to catch anything.
As you say it's possibly due immune overload.
Just before RA diagnosis I had shingles and a chest infection.
But now with the medication I need to take for RA suppressing the immune system I am extra careful to try to avoid infection. I've have had a couple of colds which had led to a cough which a while following the cold.
When I was first diagnosed I became a little obsessed with the hand washing, anti bacterial towelettes, etc. I live in Switzerland and I became typically 'swiss' --they're all a bit hyper clean out here...I never was. I was someone who rolled around in the dirt on my mountain bike and drank out of a water bottle that inevitably got shards of gunk on the mouth piece.
I'm on a low dose of MTX + a Biologic that apparently is way worse at suppressing your immune system than MTX alone and I have not been sick in two years. I once thought I had strep throat while on vacation but it was a mild case of oral thrush from a mouth wash I was using.
I've also asked my Rheumy about a flu shot and he said I didn't need one so I've gone two years on a Biologic without getting sick.
I am a bit more conscious of washing my hands and not rubbing my eyes but I am not obsessed like I was in the beginning. For me the least amount of harsh chemicals the better so I only use soap and water for my hands and vinegar and water to wash down counters.
It also takes some time for your body to get use to any new medication perhaps this is also contributing?
But like HH mentioned, I also really do look after myself. I watch what I'm eating, I stay at a normal weight and exercise daily, and I try not to obsess about anything. Oh! and I take incredible care of my teeth and change my toothbrush often! I let a lot of things go now that use to bother me and that makes a huge difference. Does this chase away the bugs? I don't know but it makes my life a lot more bearable.
I used to catch everything going. You name it, I got it. It seems to me that RA is a tailored disease unique to us. Loads of basic symptoms in common with odd little bolt-ons just to keep it all interesting. I'm on just MTX and obsessive about hand-watching - because grandkids, soap dodgers in the population - eating well, gentle exercise and trying to sleep well. It's early days for the meds for both of us it seems and I'll do whatever it takes not to have any joint damage or more flares. Wishing you better
Are you on a biological treatment? The first thing they tell you is your susceptibility to infections. Note that colds and flu are not usually caught by inhaling the virus from others sneezing and coughing. These are caught by physical contact: door handles, keyboards, shared cups and mugs etc. When working I always washed a mug before using it, even if apparently clean! Plus I now carry one of those antiseptic gels I my pocket when out and am a bit obsessive about washing my hands! I was lucky when working in that I used surgical antiseptics routinely which are far more potent than over the counter stuff. But wash and wash, then disinfect your hands.
Hope this helps? Infections are indeed a nuisance!
Hi Jess - When I first went on MTX, my mother in law had just moved to an Assisted Living facility and we went to see her every few days. For the first six months I was on the MTX, I would get sick every single time I went over to see her. Then after a few months, my system got used to the MTX and the germs and I never got sick again. I would just expect that you might get sick a lot at the beginning, but it does get better..
In 8 years of being on MTX I can count on one hand how many colds I've had. Granted when I have had one it's lasted a few weeks longer than maybe it would have prior to MTX, but then who's to know it was a particular strain that would have hung around longer anyhow? One change is if it goes on my chest, & it generally does, I phone my GP & she'll prescribe antibiotics for me, sometimes I need to stop MTX depending if it's amoxicillin or not. You probably know that MTX can affect the lungs so it's just a precaution.
MTX isn't particularly suppressive, not in the same way anti-TNF's & biologics are but having a lowered immune system anyhow with RD we should be bug aware. Just use your common sense, no need to go overboard. I keep hand sanitiser & a packet of Wet Ones in my bag & if I'm using a public loo I wipe the exit door handle or push the door & then clean my hands with the sanitiser.
Your GP Practice should have you on annual recall for the flu vaccine & if you haven't had it within the last 10 years or so, the pneumococcal vaccine, if not request you are. In an ideal world as you are in the at-risk category everyone in your household should also have them but this is sometimes cost-prohibitive if your Practice don't provide them & they need to be paid for.
Your fatigue could be disease related, the MTX isn't yet fully working or you have actually caught something, perm any 1 from 3 (if that's possible!) but whatever be kind to yourself, you're battling at the mo so rest when your body tells you to, you'll learn to listen when it tells you enough is enough. 😟
It's good to know that the majority of people that answered don't really catch more than the average person. Maybe I'm just catching more now because our kids are adults, and go more places, and also because I have grandkids here almost everyday now. It could also be that I'm worn out right now and just generally more prone to catch something. In any case, I'm glad that this probably isn't a permanent situation. Thank you everyone.
Most of the time from 2006-2014 I was taking Leflunomide. It slowed the progress of my RA but never really controlled it. During that time my immunity to things like colds and flu etc. was normal for me. In that period I never got flu, even though I refused flu jabs and I maybe got a cold once every couple of years.
Everything changed in late 2014 when I started to have infusions of Tocilizumab. My blood results were fantastic. For the first time ever my disease was considered under control. Sadly this immunosupressant did too good a job of knocking out my immune system.
For the last 3 years I just got over one virus only to go down with another. The cold that would take the average person 7 days to get over, often took me 7-8 weeks to get over. I had a continuous eye infection and permanent thrush problems. For the last 18 months I have had a nasty gum infection, which just oozed yucky pus. Finally just this week the gum has started to heal, but only after over 20 weeks of no medication.
I felt dreadful always having to rearrange my infusion appointments, as I was almost never well enough to attend my 4 weekly appointments. When the specialist Rheumy nurse pointed out that I could expect to have very little immunity to anything in the two weeks following my infusions, I was just so fed up with being ill all the time I decided to just not go over me door step for 14 days after each infusion.
I usually visit my Grandsons about once a month, so I tried to time my visits to them for the few days prior to my infusion, when my immune system should have been at its' most resilient. Still every time I spent time with toddlers and babies I got another viral infection and I would come home and need to postpone my next infusion yet again. I was getting desperate. I was always letting my friends down, to the point that I had no social life. The weeks and weeks of social isolation took its toll on my mental health.
My Rheumy agreed to me trying half the usual dose, but it made no difference, I just got viral infection after viral infection. She agreed to me having my infusions at 6 weekly intervals instead of 4 weekly intervals.
Every time I did get to go to the hospital for my treatment the nurse would say have you got any infection? My response for most of the last 18 months was, just the 3 I always have. They did not delve any further, until a few months back, when a different nurse actually bothered to take a look at the large puss oozing spot on my gum. He said something like I need to speak to your Consultant before we can proceed. After speaking to my Rheumy, he basically said I could have no immunosuppressant treatment of any kind until my gum healed. The impression he gave was that every infusion I had had during the previous 12 month had potentially been putting my life at risk!!!!! At first I was shocked and worried about how long it would be before I could be treated again. Then I started to get angry. Why had the nurses gone ahead with treatment time after time, when I kept saying I had infections?
Now, well I have just gone from strength to strength without the medication. My general health has been the best it has been for years.
In recent years the new biologicals have given many people their lives back to some extent, but for me the side effect of my immune system being so very effectively suppressed left me with a very poor overall quality of life.
A situation like yours, is sort of what I've been afraid of. Prior to taking hydroxychloriquine and MTX I rarely got sick. I was one of those people that most people consider a "carrier". I could be around sickness and not catch it at all, but allergic to all kinds of things. Last winter I caught 2-3 colds and since starting MTX 2 chest colds in 7 weeks. I am liking the pain relief that is starting to take effect, but I'm not sure that I'm willing to trade the devil I know (RA) for the devil I don't know (every virus or bacteria that decides I'm a good host). Thank you for your reply.
Do just bear in mind that your immune system is quite personal to you. So AARA's sad and bad experience of having a totally squashed immune system is his/her (?) personal experience that doesn't happen to everyone who takes Tocilizumab. Also bear in mind that biologics do have a greater immune suppressing effect than MTX and hydroxy - which really don't effect it much at all.
Your earlier comment that you are run down might be a more important thing to concentrate on? Sleep, eat, exercise and de-stress and you might find that passing bugs just carry on and pass you by.
Thank you. I agree that a person's immune system is unique to them. I'm actually hoping because my immune system has been on overdrive for so long that it's just a coincidence that I have caught a couple of things since starting it. It's not like I was the first in our family to catch this last batch of stuff. It actually started with the grandkids and finally made it's way to me. For now, I am chalking it up to being worn out from working & taking care of everyone else, along with not sleeping well with starting a new medication. We'll see what winter brings
I have come to the conclusion that I need to learn when to stop, since pushing beyond a normal limit doesn't seem to be a good option for me any longer. Frankly, it probably never was.
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methotrexate - how to know when you need something more
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