Experiences with infections and anti-tnf treatment please.

[Dogrose]

I've been on Humira since the start of December and felt ill since just before Christmas. I've fainted twice including Thursday last at work. GP said it is just all too much for me all I need to do is rest. I've managed to get a week off work to rest but still feel awful.

What I want to know is - when do you worry about infection and when do you just look after yourself and ride it out?

Advice online and in leaflets etc. seems to range from just rest to !!ermergerd you is going to die go to casualty!!!11!!

My temperature is perfectly normal, blood pressure normal, very little appetite, have to make myself eat and sometimes feel slightly sick, toilet stuff normal, tired and sleeping lots, not sleepy or 'out of it' when awake. Keep bursting into tears.

Pain/stiffness in some joints from flare up, right eye and some teeth painful. Slight sore throat.

What would you do with those symptoms?

I'm calling the rheumy nurses on Monday, can't see any point in seeing weekend GP as what could he do unless I have some sort of crisis?

I feel like I'm having some sort of mental breakdown and worrying far more than I should, this sort of thing has happened in the past and medical staff have ended up being short with me so it puts me off contacting them.

Also I have a massive phobia about fainting at work so this is a nightmare come true

Cheers XXX

[sylvi]

You are right to ride it out until monday when you can speak to your rheumy. I see you suffer with your eyes as well. Do your eyes swell and do you have bags under them that go dark when you not too good. It seems the bones under my eyes hurt as well. I know i have ra in the joint next to my eyes and sometimes they get so sore. I have drops in my eyes all the time. I had my tear ducts cauterised to stop the tears going down my nose to keep my eyes more fluid.

Yes we do tend to worry more so don't let that get you down,think that your having a bad day and it will ride itself out sooner rather than later. I'm not sure if this is of any help to you,but you are not alone. xx

[helixhelix]

This is just how I deal with myself, so a personal opinion, but my triggers for deciding I need to see/talk to a medically trained person NOW are things like temperature above 100 for more than 12 hours, blood emerging from places where it shouldn't, hot/sweaty/clammy, etc etc. If I'm just totally flattened and useless then I'll try food/fluids and rest for a day or so to see if that takes me back into the real world. it does sound as if you have worn yourself out rather too much. But then I haven't fainted since I was a teenager (and used to faint at the drop of a hat for no reason at all...) so that must be worrying you. You could also give NHS direct a ring? Might put your mind at rest a bit? Hope you are asleep by now anyway, and wake up feeling brighter tomorrow. Polly

[Dogrose in reply to helixhelix]

NHS direct tend to be of the mind if you are well enough to talk to them on the phone then you aren't an emergency case

[126Jessie]

I have been on enbrel and humira and all most of the others .....methotrexate sulpha..... etc etc.

Over this time (14yrs) I have only needed antibiotics twice and I work in a school but like you I have felt poorly with light headed-ness and a few fainting spells, especially when starting my anti tnf treatment. Most times any bugs I have caught tend to last a few extra days than the norm and if they are still there after a 3-4 weeks and I am not back to the norm I speak to my GP. I just expect any virus I catch, like a 24hr bug will be a 2 weeker for me and I am still here to tell the tales!!! Try not to worry, you sound anxious and this can lead to your appetite being poor. Also your body may still be adjusting to your meds. Try and eat regularly and keep your water uptake and have some more rest. All of that may be just what you need but don't be afraid to talk to a health professional about your feelings as well as any physical symptoms as emotional feelings can play a big part in how we physically feel. Sounds like you need more than a week. A couple of years back I was laid low with the after effects of a viral infection, temp, bloods etc back to normal but still felt awful and tearful. My doc signed me off for four weeks, although I was determined a week was enough! She was right I needed the time just to rest and I felt so much better after it. Maybe you just need a wee bit more time, try not to worry, deep breath and make a plan of what you can do to make yourself feel better, rest, try to eat little and often and phone your rheumy nurse on Monday for advice if need be. I got this advice on here from some of our good friends and it worked!!! Take care xx

[Dogrose in reply to 126Jessie]

Thank you, that is exactly what I wanted to hear, sometimes I over react to feeling ill and have ended up being told there is nothing wrong with me by emergency doctors and I end up feeling really stupid.

I think the worst thing was fainting at work, I have a (I thought it was irrational) fear of fainting at work, I even had two courses of therapy last year because I was scared to go to work in case I fainted, now this has happened

Time off work is difficult, it is a three-way job share with all of us working alone and taking over from each other, there is no other cover so I'm putting the other two out as they have to work loads extra to cover my shifts. If I couldn't work for weeks at a time they would just have to replace me. xx

[Hidden]

this fainiting with humira sounds worrying? Im just wondering how common a side effect it is?

can any else comment please?

If any doubt on your meds seek medical advice x

[126Jessie]

My fainting and dizzy spells coincided with feeling anxious when starting it, not eating as much or well as I should and not drinking enough so really a combination of things !!We forget how much this disease takes out of us emotionally as we'll as physically. Mine settled once I gave myself a bit of breathing space and put me first, no coincidence I am sure. I know it is hard Dogrose,but please put yourself first, I'm pretty rubbish at it too and I can hear my good friend saying it to me so I am passing it on. :). Have a lovely day and keep breathing, think calm thoughts and you will be just fine xxx

[Dogrose in reply to 126Jessie]

I did wait for my work colleague to disappear before I fainted, being on your own at work and feeling ill is much more stressful than if someone is there for back up.

Do you still take your anti-tnf if you are fighting a cold? The healthcare nurse told me current thinking says don't stop if you have an infection as your system is already full of the treatment/drug anyway. xx

[126Jessie]

Yes I generally keep going with a cold and with my latest infection was told by doc to keep going whilst on my antibiotics. I stopped my methotand anti tnf when I had the winter vomiting bug though as I wanted to give my body a fighting chance..... not sure it made one bit of difference though!!!! who knows?I go along the same lines that it is in your system by the time you have come down with the bug so best to try and keep a flare away by taking it. Stopped all my drugs for a planned operation though as advised. I feel for you being on your own at work, having someone there when you feel poorly is so comforting. I have a colleague who can normally see me going down -hill before I do and is a great support and distraction with good humour when I am having a less than perfect day. Stick in there! xx