End of the road for me and Infliximab

dorcas

Hi folks,
I was at hospital today for my 4th infliximab infusion.

Unfortunately after 45mins I had what they told me was a 'Toxic Reaction' ...flushed, head pounding, tight chest and felt very unwell.
The docs stopped the infusion of course, did a series of ECGs as my heart was racing, BP was raised and I thought my head would explode. :roll: They then ran through a saline drip, anti emetics and anti histamine.
Was allowed home after symptoms subsided and further hours of monitoring; but had to leave my car there as the doc insisted I got driven home.

The doc said that they thought I have a 'hidden' infection and the combination of that and the Inflix. caused the Toxic reaction. I'm told to rest up but if I feel unwell again to go to A&E.

I think that's the end of the Infliximab story for me... it was touch and go anyway as it hadn't shown any signs of working on controlling the PA. :roll:

feeling rough!... and disappointed.

Iris xxx

alarkra

Oh no, Iris I'm sorry to hear that you've had a disappointing day.

Did they say what your options are now going to be? More importantly, are you starting to feel a little better from your turn? :? (((HUGS)))

cebeem

Oh Iris ...so glad you got through the ordeal!
Keep resting and take their advice!
A&E should you be in any doubt!

Much love! x

dorcas

Hello alarka

I'm seeing my rheummy consultant on 1st December when we'll discuss what treatment options there are...but.. I had already been told by him a few weeks ago that if the Infliximab wasn't effective in controlling the PA that there are no other anti tnfs available for me to 'try'. Inflix. was my third anti-tnf.

The ward sister today said to me that I should ask if there are any trial drugs that I could be considered for; so I'm keeping that in mind!

I'm recovering OK thanks, just a bit tired & wobbly!

Iris xxxx

Hi CB didn't see you there..
I will follow the advice... and yes, I'm glad to be over that experience.
Iris xxx

angel1

Iris, that must have been very frightening for you. I hope you are feeling a little bit better now.

Try to forget about whether or not you can continue with the Infliximab, and concentrate on getting over today`s awful experience. You were, at least, in the right place.

I`m sure you will be fine, but any worries, please seek help.

Will be thinking of you........Much love........Ange.x.

dorcas

Hi Ange,
I agree, it was better that I had the reaction while still in hospital; the nurses & docs were extremely quick in responding and helping me.
..thanks as always for your wise advice. I'll concentrate on the 'now' rather than looking too far into the future

Iris xxx

barbara12

Iris I am so sorry, what an horrible experience you have had, it must have been so scary.
Please take it easy, and like Ange say anything that worries you please get some help.
I do hope things subside very soon, and you are feeling more yourself.
Sending you lots of very warm hugs ((((((()))))
Love
Barbara xx

dorcas

Hi Barbara.
It was a very frightening experience and one I'd not want to repeat. :shock:
We forget sometimes how powerful these drugs are. The nurses always check before starting the infusion that you are feeling ok and have no signs of infection.... (which I now know is due to the potential for reaction). In fact, the hospital I attend insist you phone 24hrs in advance of going in for treatment to confirm you are 'well'. ... which I was.

thanks again Barbara for the warm (((hugs)))... always appreciated!
I'm off now to lie down for a couple of hours ..

Iris xxxx

tillytop

Oh Iris I am so very sorry that you have come to the end of the Infliximab road and that you have had such a nasty experience with it today.

I really hope that you start to feel better soon and that another drug option becomes available for you.

Thinking of you Iris.

Lots love Tilly xxx

skezier

Hi Iris,

Hopefully I missed you and you is sleeping it off..... you better be flower!

I am sorry this one got you like this..... Its horrible to react to a drip like that and very scary as well and thank god you did have it there and not when you got home. As that they were able to flush yo out a bit and give the anti histamine straight away.

Trial drugs might be good..... sooner or later they will licence the other one and in the mean time just hang on to hope.

Leaving you a ((((((((((( ))))))))))) but it needs warming cus I only just got home and tis some wet and cold I afraid.

You feel better soon and just take it easy for a coupe of days please. Love Cris xxx

annie_mial

Sorry it's ended like this for you, Iris. What a frightening experience! You just concentrate now on yourself and take some time out for a couple of days and rest up.

Annie
xx

mp1952

Oh my goodness Iris.. that is very scary indeed just reading your description of it..

I do hope you feel better by tomorrow

I will PM you tomorrow

Please take care

Marion xx

speedalong

Oh Iris,

that sounded scary. Lucky it happened whilst you were there and they could treat you promptly. How disappointing though that this new med isn't the med for you, I am sorry. Rest up now and give your body a chance to get over the shock it has had.

Thinking of you,

Speedy

Poppyg1rl

Oh Iris I'm so sorry, what an awful thing to happen to you. Hopefully with plenty of rest you will feel a little bit better tomorrow. Wishing you well Poppy X

Wonkylegs

OH Iris, I was thinking of you this morning and wondering how you had got on. I had so many bits of me crossed for you that this time you would get some good news .... .I'm so sorry that it has been such a rough day for you.

Blimey, that must have been one heck of a shock for you. I am so glad that they looked after you so well. I am glad you were able to get home ok - and I do hope that you won't have any more trouble over the weekend. I know you will not mess about and will be at A&E as soon as you feel you need to be.

well ...... I've mixed feelings now about telling you that my letter arrived today with my first 2 dates for starting infliximab. :shock: December 13th & 29th. Mind you, I have to be there at 9am which will take some doing :roll: :roll:

I am going to ring them next week to find out more info, as the letter gave no info whatsoever about how long to expect to be there .... if I can drive home etc ...... if I need someone with me for so long after etc ...... after what you have told me, we are thinking that hubby will take the afternoon off to come and fetch me home, and then maybe stay at home the next day so that I don't have to do much. As for the second one ... glad we don't have new year plans and dad may have to go home earlier than he might have expected!

right my friend ..... please do take very great care of yourself, and try to do what Ange suggests and concentrate on now. I'm thinking of you and sending loads of wonky hugs ((((((())))))) and littlelegs has joined in with some special tail wags. As for hubby .... he's sending you a bar of chocolate

sleep well
WOnky xxx

claircoult

(((hugs)))

What a day! You look after yourself.

Clair

angel1

More loving thoughts for when you look in Iris. I haven`t been able to stop thinking about you all evening, and your dreadful experience. Rest well......Much love.......Ange.x.

julie47

Hi Iris

Glad I just nipped on for a minute otherwise I would have been even later in responding to your thread.

I hope you feel much better today after having hopefully a reasonable sleep.

What a frightening experience you hd at the hospital. I bet you wondered what was happening. I am pleased that they soon got your symptoms under control.
Was prob safer to leave your car, but i suppose frustrating.

I am sorry that this is prob the end of your treatment and hope that they can find something else.

Well have a restful weekend

Take care
JuliePF x

dreamdaisy

We all find ourselves in deep holes from time to time when dealing with this arthritis malarkey, but as far as I am concerned the deepest ones are those into which one tumbles when yet another 'cutting edge' drug fails. I think you have suspected for a little while now that it wasn't the one for you, yes? but to have it confirmed, and in such a horrid way, oh the INJUSTICE of it. I am so sorry, dorcas, what a rough time you have had with it all and for this to happen now . . . . I am exasperated with the meds and very upset for you. You are in my thoughts. DD

dorcas

Hi Tillytop, Cris,Annie, Marion,Speedy, Poppy, Wonky, Clair, Ange, Julie and DD.
Thank you so much for your kind and thoughtful messages.

I did try to get back onto the forum last night but couldn't even access the main board. :? but I guess the powers that be probably knew what was best for me. :!:

I'm feeling much more myself after having spent most of last night and today in bed .

You're right damsel... this drug wasn't really working for me and chances are that in two weeks the rheummy would have withdrawn it anyway ... but it was a spectacular way of stopping. :shock: :!:

Onwards and upwards... I've already emailed the Scottish Medicines Consortium (equivalent of N.I.C.E) to enquire what other anti tnfs are available for the treatment of psoriatic arthritis.
I read that the SMC have very recently (10/10th) approved certolizumab (cimzia) for treating RA but it doesn't mention PA or any of the other sero-negs. :?

No harm in asking is there? I'd like to go prepared for my next rheummy appointment!

ALison, I am pleased you have got your dates through for your infusions....and hope that you will greatly benefit from this anti tnf. :!:
I was just a bit unlucky as it wasn't the right drug for me, but I would be sooo pleased for you Alison if it helps you in your fight against our common enemy :!: .

with love and thanks to all.

Iris xxx

dreamdaisy

It's good to hear from you - and sounding relatively perky too, given the events of the past 36 or so hours. Hats' off to you for courage, guts and determination but I still feel bitterly disappointed for you and very upset. I know that you knew you would be taken off it, but perhaps you're right - what a way to say goodbye to infliximab! Please take care, rest well, hopefully we'll chat tomorrow. DD

PS I couldn't get on last night either. A conspiracy against PAers, perhaps?

Rainbow77

Hi Dorcas

Just catching up. I am very sorry to hear about the side effects you experienced yesterday. I am glad that you have been resting and feeling a bit better today.

Look after yourself

Fayann xx (((((((((((((((((((())))))))))))))))))))))))))))))))))

ironic

Hello Iris,
I was so upset to read your post. Although expected it still is a cruel blow. We all hope that you will find a new way forward. I see you have already started to gather information. You truly are an inspiration to us all.
Hope you managed to get your car back, there really was not choice but to leave it there.
There must have been something in the air last night as my computer connection was very iffy too.
Sending you all my best wishes Iris,
Much love,
Ix

chris7

Iris

So sorry getting late to this, I couldn't get on line yesterday. I blame the weather and dongles. (Cris knows all about that)

What a scary and disappointing day you had yesterday, and that seems to be putting it too lightly. So glad they insisted on getting you home without driving. It must have felt like such a let down when you had hopes that the infusions would help. I know they had never been easy for you.

Really hope you have had a good rest today and started to get over the shock a little. Good to see you are already looking ahead and I do hope your next appointment can be a positive one for future treatments. You and Wally have had quite a year love so do take care.
Sending buckets of hugs you way ((((( ))))) and will try and look in again soon.
love
Chris xxx

elnafinn

Dear Iris

This is the first time I have quickly logged on to the forum for a couple of days and I am so very sorry to read your post. It must have been horrenduous to start feeling very unwell at the hospital but at least you were in good hands and something was done immediately.

I hope you will soon feel much better but in the meantime, take things easy and let's hope your rheumy has some alternative to recommend for you, when you see him.

Love and gentle hugs
Elna x

Wonkylegs

HI IRis

so glad to hear from you again and in such a positive way. I admire you for already starting on a plan what a way to go!

I hope you continue to rest and relax, as you have been doing, as if anyone deserves a bit of a rest it is you!!

loads of hugs from the three of us here, and another bar of chocolate (you know which one ) from hubby's secret stash

loads of hugs (((())))
WOnky