Interesting week and Humira

jenzie06

Bit of a long one - get comfy!
Been on Humira since Sept/Oct 2010 and had my first antibiotics for tonsillitis at the end of October. Since then I've had repeated colds, ear infections, tonsillitis - with the help of my son who is now 9 months but is very free and easy with his sneezing and coughing.
On Monday I started with his latest cold, not great timing as we have a very busy week planned ending in my son's Christening and 40 adults, children and babies having food at our house. Felt lousy and voice went monday and tuesday. Wednesday I managed to struggle round Tesco to get the food in. By Wednesday lunchtime I was freezing and trouble getting my breath. Saw my GP who told me to go straight to A&E where I was put straight into majors, had a camera up my nose to check out my throat (3 times) and the team from the intensive care assess me (me meanwhile was insisting that I was *gasp* fine).
Luckily all the steroids, antibiotics and other drugs they gave me to open my airways worked and after yet another look at my throat I was allowed home after only one incredibly disturbed night in hospital. I've still not got a voice and the coughing is really starting to get boring but I'm feeling loads better.
Saw my Rheumy consultant whilst I was in hospital (I had asked for an emergency appt and was determined not to miss it even though I felt like death warmed up) who said that there had been a few cases of humira causing swollen throats. But I took my last jab two weeks ago. Now they want my next jab to be under supervision in hospital just in case. Also he completely dismissed why I had wanted to see him in the first place. This meant I managed to get back to the ward before bursting into tears (not great when you are still breathless) as I felt so let down.

Any suggestions or anyone else experienced anything similar?

ratface

Sorry to hear of your problems with humira and all the infections (and etc.)

Just started on it myself (only had 4 injections so far) so I will be watching for responses to your post with interest.

Cant be easy for you having to deal with a young baby AND medical problems - I do really sympathise and wish you a speedy recovery.

I wish you a 'fairy godmother' to help you look after the little one - you can then put your feet up and concentrate on getting better.

Love Rat Face xxxx

arty

Awww :sad: I bet you were beside yourself, It can't of been nice getting prodded and poked but, you were in the right place and did the right thing in going.

Been on Humira around 4 mths now and shhh ok so far, fingers X. I have heard of people having sore throats but not so bad like yours.

I had a RA related scare last yr - rushed in hosp and kept in for 3 days with tests on my heart [die injection and scans,,, nurse said it would feel warm of which it did, but also felt like I had wet myself too! I hadn't btw!...You just have to stay calm but easier said than done hey?

Hope the next inj goes well and if not ask lots of questions and trust your own instinct. There are other options if it doesn't work.

Take care

mp1952

Hi Jenzie

That sounds very scary indeed!

Hope you continue to improve over the next few days.

I am due to start Humira shortly and like to be prepared for every eventuality, so I will be watching this thread!

Marion x

tkachev

Hi Jenzie,

Good luck with the christening.
I have had a constant cold since early September and have had to stop taking MTX and Humira for weeks at a time to allow the cold to get better. Then once back on my meds the cold returns with a vengeance. I am currently on antibiotics for a chest infection anh my arthur is getting steadily worse.
I have suffered from breathing/throat problems in the past but feel that humira has actually improved my symptoms. I no longer have to sit bolt upright in bed throughout the night but do sometimes wake up gasping so have to keep loads of drinks next to my bed.
I am glad they will supervise your next injection. At least they are taking things seriously. However I am sorry your rheumatologist dismissed most of your concerns. I am not sure how ill you need to be for him to take notice.
I hope you improve quickly. They might take you off humira and try a different anti tnf.It might be better to try something else as you are feeling so ill,

Elizabeth

tillytop

Hello Jenzie

I am so sorry you are having such a rough time. I just wanted to say that I am really glad that the docs are going to keep any eye on things re your next Humira injection. I had a nightmare time with Humira. I was taking it for almost 3 years and was very, very unwell for at least half that time with many and varied symptoms including an episode of angio-oedema where my face swelled up (but luckily not my throat). But I was told by the rheumatologist, the GP and the many and varied specialists to whom I was referred that my symptoms couldn't possibly be Humira related (even though all were known, fairly common side-effects). So I just kept taking it and getting sicker and sicker. Eventually, the rheumatologist grudgingly suggested I stop the Humira for 12 weeks and - guess what - the majority of my "mystery symptoms" disappeared and I now have it "in writing" that Humira was responsible.

I don't want to put off any potential Humira "newbies" - I think I was just unlucky, but I wouldn't want anyone else to go through that, which is why am am sharing this with you in response to your post.

I do hope your next Humira injection goes ok and that you start to feel better soon.

And I hope that the christening goes well.

Love Tilly xxx

tkachev

How are things Jenzie? And how did the christening go?

Elizabeth

skezier

Hi Jen,

Late again sorry.

Hope the christening went ok?

Its hard sometimes flower but hopefully with the medics keeping an eye on you your going to be a lot better soon. you did the right thing but it is a lot of poking and prodding eh?

i had some mtx/pa/crohn's thing and they said my body just went into shock cus it was all too much. Thankfully its only happened the once out side of the infusion i have to have,.. that's always good for a bit of a scare but i don't seem to worry to much and just always go to sleep if I can.

that's the wrong thing to do so well done for doing the right thing. Hope your feeling a lot better and the cold thing... had one for albut 2 years courtesy of sulfa and mtx. Cris xx

jenzie06

Thanks for your replies everyone, much appreciated.

The Christening went really well and even my poorly 92yr old Grandma made it to the Church (although she slept through most of the service). My son was brilliant and didn't cry when he had the water poured over his head (hubbie had been practising with him in the bath).

I'm pretty exhausted now and I've not much planned for the rest of the week.

One interesting development - I've suddenly realised that the horrendous pain in my knees which I've been struggling with for the past 6 months has almost totally gone?! I've had a shed load of steroids in the past week so I think they have helped but the quick dismissal by the rheumy that it's fibro therefore the claim that there's nothing they can do is not right. They've given me an appt to jab myself with Humira again in two months time - no clue as what to do in the mean time with regard to drugs. I'll be on just a bit of amitrip and pain meds.

tillytop

Hello Jenzie - so glad the Chistening went well!

I am sorry that you are "in limbo" for the next couple of months. Did you do another Humira injection at the hosptial in the end? It's not good that your rheumatologist was so dismissive, but your observation about the steroids helping is definitely one to raise at your next appt.

Thinking of you.

Tilly xxx