Humira, hidden infections and Addisons disease

[alisonmerry]

Hi, I am on humira for my RA and have just had a scary few weeks where I had a full blown Addisons crisis ending up in hospital for IV fluids and drugs. I have polyglandular autoimmune disease ( basically an identified genetic disease with multiple autoimmune diseases) and what was thought to be secondary Addisons beacause of steriods for RA is in fact very much primary Addisons due to autoimmune disease.

It turns out I had a massive urine infection which had been hidden because of the humira, so I was unaware I was poorly and ended up in crisis. Now I know I have to be very careful of infections because I need to double my steriods to avaid another crisis I am really worried about missing something again.

I don't want to end up paranoid, but does anyone else have some some tips or management advice about identifying infections when you are on DMARDS, biologics or similar drugs? Any experiences would be gratefully received, thank you.

Alison

[Ella32]

Hi Alison

sorry you are having such a rough time. I take Enbrel Anti TNF and i have the same kind of anxieties about infection as have occasionally missed 1 or 2. so here is what i do now, and (touch wood) it seems to work. I have a thermometer, and always do my temp if i'm unsure, unfortunatly any immune conditions mean that our temps are normally a bit raised, so general rule of thumb is - Anything up to 37.4c is ok for us, anything over 37.4 is poss infection. Then i also do a Urinalysis stick just before i inject to check for 'hidden' wee infections. But get some training on reading these as not all positives are bad, for example if you are due to menserate this will positive for blood etc...

My consultant says anything other than a confirmed infection you should inject as the risk of out of control disease is worse than a grumbeling bug. Remember there is only a problem if you have something 'bacterial', viral is generally ok.

If in doubt of how well you feel just put it off for a day and mostly anything will come out in 24hrs is you do have something.

I get this is really hard to gauge and i find that working all of our health problems out and deciding if they are serious or not is like a full time job!!!

Hope this helps?

Ella xx

[alisonmerry in reply to Ella32]

Thank you Ella that has given me some really good practical suggestions. Unfortunately because of the Addisons I think it will be if in doubt don't as any grumbling illness could tip me into crisis and need increased steriods. However you are right about the 24hrs if I am more vigilant and I'll definitely take on board your ideas about temperature and clinistix.

Really helpful, thankyou

Alison

[aston]

Hi Alison, I've been on Humira for 3 years now, and for the last 18 months have had recurrent UTI's, I am now on a prophylactic antibiotic (Trimethoprim 100mg one a day). My consultants have advised me that at the first sign of an infection, hot and cold sweats, feeling extremely sleepy, and generally feeling unwell, stop the Humira and get to my GP, luckily I can see my GP on the day i ring them.

I hope you get well soon, and hopefully you can stick with the Humira, i used to get lots of various infections, at first but since going on the low dose antibiotic i'm not doing too bad..take care

Debbie x

[alisonmerry in reply to aston]

Thank you Debbie. I am sorry you have the added complication of recurrent UTI's but it sounds like you have good support and have found a way of mananging them.

I'm determined not to lose my Humira and the low dose antibiotics does sound like an option if I need it. I am greatly reassured that others have the same problems and found ways of getting around them.

Thank you

Alison xx