I started on Humira on January 31st this year, had 2 injections and then got a chest infection so missed 2 injections. Started again and then 5 days later i noticed i had a few spots on my chest, looked at my back and it was covered in a red rash of inflamed spots. I thought that as it was the weekend i would leave it and worry on Monday when the doctors open again by which time it looked like it was fading.

Thought no more about it until i had my next injection and found i got the rash again. This time it has lasted longer and there is more of it. It's not itchy at all and i also have had a pain in my back, directly behind my heart all of that time. Any ideas as to why? I'm also on MTX.

I'm dreading that i may be allergic to it us after 2 years it has given me a few good days each week instead of the odd one and i'm worry that i may have to go through the long process of waiting for another TNF.

If anyone has any advise i would really appreciate it as i don't know what to do for the best.

Love Shirley x

Hi Shirley,

can you ring your rheumy nurse? I don't think you should take the humira again till you have spoken to your rheumy nurse or GP.
Sorry you have this to cope with.

Love, Doreen xx

Hi Shirley - I can't help re Humira but I had to stop Enbrel due to allergy. I ignored the weekly rash for 3 weeks (it didn't start till injection 5) and each time it got worse. The nurse told me off for not showing it to her at the start!

She said I had to have 4 weeks to get it out of the system but would set up for Cimzia in the meantime, and explained that there is no real wait when moving from one to another anti-TNF as you already have the paperwork done. As it turned out, my Cimzia arrived before I was allowed to start it! Hopefully you won't have a long wait if you need to change from Humira.

If you do have to change, Cimzia hurt a whole lot less than Enbrel! Good luck xx Ailsa

Thanks for your help everyone that replied o my post. The rash is still there but fading. I'm due another injection on Monday and i'm really bothered that it may be an allergy but too scared to ask anyone professional as i'm due to go on holiday next Thursday to Spain and last year i missed my holiday due to a reaction to leflunomide that gave me liver failure and i ended up in hospital for 2 1/2 weeks.

I don't know what to do for the best so i think i'll make a decision on Monday. I don't have a rheumy nurse and if you phone the secretary it goes to answer phone. My Doctors surgery haven't got a clue and look at you blank when it coes to these drugs!

Thanks.

Love Shirley x

Thanks for your reply Lyn. I think i will see the doctor tomorrow and see what they think. If it does mean going to A & E to see a rheumatologist it is probably more sensible than to ignore it and then be ill on holiday.

I will let you know the outcome.

Thanks. Love Shirley x

I thought i would update you and what has happened. Well i phoned rheumatology yesterday morning and got an answer straight away. The nurse said that a rheumy would call me back. It got to 2.30pm and i still hadn't got a call back so i phoned again to be told i would definately get a call. I didn't.

Rang again today to be told that the nurse had put my notes in the rheumy's office but as she was snowed under and her secretary was away at the moment that was probably why she hadn't called me!! She said she would put another note in her office.

Well i made the decision not to have the humira last night but had the mtx. The rash on my back is worse and i now have several odd spots on my thighs and neck.

Love Shirley x

Hi Lyn

Your idea of calling health care at home is a good one. I will ring in the morning, thanks.

Still no phone call from the rheumy.

Yes, i'm off to Spain on Thursday. We leave at 4pm and i'm going to have a good holiday, regardless of this rash!

Thanks. Love Shirley x

The rheumy phoned me just before 10pm on Tuesday evening. She has been so busy catching up on calls that was the first time she had time to call me, bless her, at least she did in the end. She said i was right to miss the humira on Monday and to miss the next injection and see what happens with the rash. If the rash goes then i continue with the humira and see if the rash re-appears and then i change to another TNF. If not then i will see a dermatologist to see about the rash.

I'm happy with that decision and we are setting off for the airport at 4pm. I will be back on here after the 2nd of May.

Happy Easter everyone.

Love Shirley x

Hi, back from Spain now. Had a lovely time apart from diaroheoa, stomach pains and the rash is much worse!

Been to the doctors this morning on an emergency appointment and fortunately got to see the GP that is also a dermatologist. He said i have vasculites and widespread folloculitis so i have been given antibiotics and body wash and he said he thinks it's the humira and also the diaroheoa and stomach pains are probably caused by it so no more humira. I have spoken to the nurse at rheumatology and my rheumy is back in on Friday so she will ring me then.

Hope you all had a lovely Easter.

Love Shirley x

Sorry to hear this Shirley.
Hope they can give you an alternative drug soon.
Glad you enjoyed your holiday.

Doreen xx