Infliximab infusion

Wonkylegs

HI All

sorry not been on here much for a few days now - so missed wishing you all Happy New Year!

Had my second infusion on 29th, and this one was a higher dose, as the first one was calculated incorrectly :roll:

It has really knocked me out, and I am having to pace myself a lot. Hubby goes back to work Tuesday (gulp that's already today!) so that will make life interesting!

I am going to have to ring the rheumy nurse later today. I have been having intermittent tingling of my lips and tongue, which started the day after the infusion. I had this very briefly after the first infusion, which they knew about, but they didn't believe it was anything to worry about.
I didn't ring last week for a number of reasons, but it is playing on my mind. I don't want to be over-cautious, but I don't want to sit on something either ...... and my confidence has been rocked by the wrong dose issue too which isn't helping.

wondered if anyone had any side effect similar & what happened about it?

thanks
WOnky

janie68

Wonky

I haven't had this anti-tnf, but I wanted to say that you are doing the right thing giving rheumy a ring, If it's nothing then it gives you peace of mind. I fthere is, then it can be sorted if needed.

Good luck! Let us know what they say...

Janie xx :P

Colin1

Hi Legs long time no see and all the best to you and yours
I'm on Rituximab but up to now no side effects other than a little itching. It does knock your confidence when i mistake is made and as these things are double checked you wonder how it happens. Hope you get sorted
Take care
Colin

dreamdaisy

Morning Wonky, poor, poor you, I know from the forum that the inflixi can knock people sideways for a few hours, and I hope you start feeling some benefit from it soon. OK, so they made a mistake with the first dose but at least it was an under-dose, not an over-dose, and in the long-run might have done you a favour in giving you a more gentle run-in to this biologic. As you know I had no problems (apart from the fact it didn't work) so I cannot offer any advice apart from ringing your team if you have any worries. I hope you start feeling its benefits, and soon. Oh all right, as it's you: ((())). DD

elnafinn

Thinking of you dear Wonky. Best to ask advice, so am pleased that you are going to do that.

Let's hope 2011 will be kinder to you.

Love
Elna x

barbara12

Hi Wonky
I do hope you get in touch with your rheumy, always better to be cautious.
Heres wishing you a much better 2011, and sending some healing and warming hugs to you ((((((()))))
Let us know how you get on.
Love
Barbara xx

julie47

Hi wonky
Happy new year
Hope you have by now got in touch with the rhummy nurse and that if she gave you advice your mind is at rest.
Well done having the 2nd treatment I hope it starts to work for you soon. I am not on inflixi so i cannot advise.
Sending hugs ((()))
take care
juliepf x

fayrose

Hello Wonky
Haven't been around much these last months due to family horrors 'n' stuff and I'm sorry to see you are having horrid times with this drug.
I don't really know much about it but wish you all the best and hope very much it helps.

Fay xx

ironic

Hi Wonky,

I hope you have heard back from your Rheumy Nurse by now. I must have been scary for you, we all react so differently to these drugs and you are right to double check any side effects.

I hope your first day without OH has not been too bad for you. Is it good or bad that you have nurse Little Legs with you????

Hugs,
Lv, Ix

Wonkylegs

Thanks everyone for your replies.

makes me even more :oops: :oops: now because I chickened out and didn't ring. :oops:

I will be at my GP surgery tomorrow for my MTX and bloods, and will talk to the nurse, and see if I can get an appointment with my GP tomorrow too. I trust them, and they are there when you're speaking to them rather than leaving a message on an answerphone and then having to wait for a reply.

I did finally get through to the OT department and will hopefully be getting a replacement resting splint made at the end of the month

slept a lot of the after noon today, and yet still tired now, so will sign off with a promise that I will ring if the GP says I should

Wonky

julie47

Hi wonky

Good luck when you go for the meth and don't forget to ask the nurse her advice, If you are not happy with what she says make that appointment with your gp.
sending you hugs ((((())))and take care
love juliepf x

skezier

Hi Wonky,

Just dropping you in a ((((( ))))). Love, slurps and a cuppa, Cris xx

dreamdaisy

Hello wonky, I hope your meth and bloods went OK and that they could offer you some advice re the inflixi. That is good news about the splint tho - is the timescale quite fast? I don't know much about these things. DD

frogmorton

Hi wonky

You better be a good girl and ask advice for sure - always bets to err on the side of caution.

Rest rest and rest in the meantime )

Like me x

Love

Toni xx

barbara12

Hi Wonky
Sending you loads of hugs (((((((()))))) I really do hope it works for you, now get some rest and let your body recover.
Love
Barbara xx

Wonkylegs

oh thank you all so much

which one of you said 'get some rest and let your body recover' :?:

never a truer word :!:

last night (early this morning actually) poor Mr Wonky was rudely awoken from a deep sleep when, in the dark, I tripped over the dog bed, caught my ankle between said bed and our bed, fell almost on top of the dog, landing half on the dog bed and half on a (now exceedingly wonky) plastic box full of books, draped myself in the washing which had been drying on the radiator, and generally made a total idiot of myself! :oops:

I didn't do any serious damage though was shaken, and after being craned off my less than comfortable perch courtesy of my hubby, I covered myself in arnica and tried to sleep off the aches. Of course I slept through the alarm, so didn't get an appointment with my GP , but did chat things through with the nurse, and have left a message on the rheumy nurse helpline and await a call back. I'll let you know when I hear anything back.

Predictably the whole of my body is now in revolt, and I am indeed taking it steady and trying to let my body heal :roll: I'm off in a little while for a long soak in the bath.

WOnky

PS - DD - I was very lucky indeed to manage to get an OT appointment this month - the next alternative date was middle of March :shock: my OT is a very busy lady!

chris7

Jeepers Wonky :shock:

Sorry I have only just caught this thread and I made some flip remark elsewhere about our local earthquake not realising that you were probably the cause of it!! :oops: Sorry the second infusion was stressful and scary. I was just going to tell you off for the chickening out with the phone call and then read to the end. OMG what a bad few days you have had. Do hope you did manage to get a relaxing bath and are having a decent sleep now and that your revolting body (your words ) feels a little better tomorrow. Forgive me for not seeing this earlier. I send some of your soothing warm wonky hugs (((( ))) and do hope you feel less battered tomorrow.
take care
love
Chris xx

ironic

Hi Wonky,

Ouch and double ouch! You don’t do things by half do you? I wander about the halls in the night regularly, so I can understand about keeping the lights off as I don’t like to disturb hubby. :roll:

I hope the nurse rang you back and she managed to put your mind at rest.
A better night for you tonight I hope.
Lv, Ix

dreamdaisy

WONKY! What are you like, woman? Haven't you got enough to cope with without tripping over dog basket plus dog, box of books (read or unread?) wedging yourself and doing ghost impresssions with your washing? I have to admit I did giggle a little (oh alright, a lot) when I read that, but then the deeper implications hit and I feel rather guilty. Are you OK? I hope you haven't damaged yourself in any way, and that the bruising is minimal. Perhaps a little night-light somewhere could be useful? Take care, I really do hope you are OK. DD

Wonkylegs

Bless you Chris, Ironic & DD - I am much better than I have any right to be, though not my usual chirpy self today I have to admit :roll:

I was lucky - the books (all read and waiting for a home to be found for them ) saved me from travelling all the way to the floor, so it could have been much worse. I used liberal amounts of arnica gel asap, and that helped to minimise the bruising. SO tonight it is only my back and one hip which are still complaining, together with the dog who is not sure she likes her new sleeping arrangements :roll:

I have decided that putting the light on during my nocturnal journeys and perhaps waking hubby is preferable to not putting the light on and waking him in such a sudden and dramatic fashion! I must remember!


As for the rheumy nurse:

the edited (for foul language :eek: ) version goes like this........
finally received a call today at 4pm telling me that I now have an appointment in the 'emergency clinic' on 20th Jan ......... this appears to be to discuss my 'reaction' to the infusion and to decide if I will be having the infusion on the 26th. :shock:

No enquiry after my current health.
No collection of any facts.
No advice on what to do in the meantime.

and what made me most upset was that there was total lack of understanding as to why I might be upset with this arrangement!

I daren't say more. My BP is high enough already

suffice to say that I'll be more likely to see my GP in future than ring for 'advice'.

Wonky xxxxx

annie_mial

Wonky, you are a woman after my own heart! After years of falling down the stairs in the dark I finally gave in and asked for a nightlight to be installed. No more falling downstairs, instead I started falling up them!

No stairs now, but still have a nightlight as now I fall over the clothes airer!

Seriously, I could hear your BP going up as I read your post - it's the baffled silence when they can't work out why such information/advice/whatever is important to you - I feel like shouting at times 'It's my body, and you are playing silly whatsits with it! I just want to know what silly whatsits!

Good luck for your next appointments!

Love
Annie

skezier

Hi Wonky,

You know what I think and I could join you in the deleted words section over the way she treated you.....
They really should be more understanding but its seems nowadays they have lost that....

There are still a few but clearly you one isn't!

I really hope you are feeling better and sorry I was late tonight... promise to try and be earlier tomorrow. Leaving you a cuppa, ((((( )))))'s and an anti fall draft...... I should have kept that one..... love the mud skipper xx

bertyboy

oh Wonky i hope you are ok after your topsy turvey trip these things are a shock to the system , it sounds as if there are many hossy people that need to listen to whats being said at the time ,med reactions can be very scary sending gentle hugs and an everlasting nightlight xx

julie47

Hi wonky
Just checking to see how you are doing
hope you are ok
thinking of you
juliepf x

Wonkylegs

thanks again everyone.

feeling totally washed out today :sad:
was in bed all morning, and not done very much at all this afternoon. no energy, ache all over, starting to worry that this infusion is working against me instead of for me.

if I feel no better tomorrow I'll be ringing my GP first thing Monday morning, and hoping that she'll see me.

The sad thing about the phone call yesterday was usually they have been very understanding, but this time ..... well I've said enough already on that one. :roll:

Annie you had it so right ...... thank you for putting it in a way which made me smile but got it just right too! might even say that to her next time

I@ll try and pop on later, but might not and get an early night ..... though really have no right to be sleeping again after this morning!

hugs to you all ((((((()))))))))))
WOnky

jennylynn

Hi Wonky,

Just catching up on how everyone is doing, studying hard for my exams this week so been absent for a little while. I caught site of this topic though and i wanted to see how you were getting on with the new drug, and i'm sorry its causing you so many probs.

I'm doing a clinical trial at the minute and had my first infusion of the usteinkumab (?) drug they use for psoriasis - i dont think i have ever been so ill!! Muscle spasms and sickness lasted a few days, got my next treatment on wednesday this week. The stupid thing is i have no idea if i am actually getting the drug or not!!!

Just wanted to let you know that you are so right to question any symptom because its your body and nobody cares more about your health than you do and just wish you well with your next treatment. I hope you start to see some improvement because it will make it all worth while. The only saving grace of my two day sickness is that my joints all seem to be improving. My index finger on my right hand was very swollen and beginning to develop quite an arc, it may be my imagination but it does seem to be straightening.

Everything crossed for you.

Jennyx