All I Can say is WOW

theresa4

Well after my appointment on Tuesday at rheumy clinic seemed so negative I had a really long intimidating appointment that was actually positive in outcome. I had 4 Consultants in the room debating over the top of my head.

The rash has been virtually confirmed as a reaction to the infusion (highly suspect was the words used) they have taken bloods to try determine why.
Ive pleaded to saty on the drug as it seems to be working as Im walking unaided still in pain but unnaided I even managed to use my lonely (of 3 yrs) X trainer yesterday

They have agreed but downside I have to go into hospital have the time of infusion extended from 1-5 hours 1/2 the drug dose and have to stay in as an in patient overnight oh and they are giving me anti this that and the other + steroid in drip before infusion to counteract the reaction.
If that doesnt work they will start a program of desensitising me from the drug but that will take time.

Even the consultant who was horrible to me before was really nice (maybe cos Ive had a positive reaction (well mobility wise) to her baby.) She smiled at me and agreed that it was lovely to see me more mobile (she claimed I didnt have RA before :shock: ) she Agreed Ive had lots of problems with the other biologics and hopefully can ensure that I can continue with this one.
One of the other consultants accidently said about another patient with a rash on tocillizumab and she quickly said POSSIBLE reaction so they are obviously trying to keep things a bit quiet.

The Prof is determined to keep me on this one if ppossible as otherwise my options for biologics are pretty none existent.

So everyone mentally cross fingers for me please

Thanks for catching up with me

Theresa xx

stickywicket

That sounds very good, Theresa. They're obviously taking you very seriously so hopefully things will be on the up. I do hope so.

Folara

I shall definately keep my fingers well crossed (virtual ones as the real ones hurt - but im sure it will still work). It sounds like you are finally getting some relief and being taken seriously.

Good luck with it all.

Fols xx

marrianne

Theresa,Its lovely when things start to go well.Hope it continues till you a lot better.fingers crossed now and in the future.Marrianne

mig

Fingers crossed.Mig

skezier

Hi Theresa,

Glad they have at last started to take you seriously and they are now doing things to really help you. Got everything crossed you will get a very good response and will be in your pocket. Let us know when please. Cris x

Numptydumpty

That's good news Theresa, I'll be keeping my fingers and toes crossed for you. I wish you well,
Numpty

tillytop

I am so pleased they have listened to you Theresa and are going to let you have another infusion - and that they are going to monitor you carefully.

I do worry about the consultants "keeping it quiet" though because that is exactly what I believe happened to me when I had problems with one of the other biologics. I know that at my hospital the drug companies directly fund some of the biologic specialist nurses so I worry that they may sometimes have a vested interest in not admitting to side effects and reactions. I am fairly sure that my drug reactions were not reported to the MHRA, even though I believe the hospital was obliged to do so because the drug I had problems with was a "black triangle" drug - which, as I understand it, means a drug which is under close surveillance until its long-term safety has been established. With these drugs, docs are supposed to report anything which could conceivably be associated with the drug, even if evidence is not conclusive.

Thinking of you.

Tillyxxx

bounce

thats great news to hear, and Im keeping my fingers crossed that everything stays positive

Julie

barking1

great news Theres,fingers crossed for you x Jane

theresa4

Just wanted to say a big thankyou to everyone for your support and good wishes

Theresa x

bubbadog

Hey Theresa, great news that the infusion has helped and your moving about better. Hopefully the rash was a temp blip and it's just a case of getting doses right. Hope it carries on helping you.

theresa4

Well the rash is gone but the pain is back. I assume as it was my first dose it's run out already with 1 week to next infusion. I've been very teary today don't know if it's the pain and disappointment or the emotional and stressful week I've had. But I don't feel very well either so maybe it's that. Still waiting to find out my next infusion in patient appointment so a bit up in the air. Can't type anymore as my hands are really painful
Thankyou again for your support

Theresa

stickywicket

That is a bit disappointing, Theresa, but let's hope you're right and it's merely 'run out' and the next dose will send things back up again. I do think the 'teariness' can be explained by all the emotional upheaval. I hope the hands improve soon.

sugarbuttie

You are bound to be drained by it all so cut yourself some slack & allow yourself sometime this weekend to just wallow & rest (even if just for an hour). Keep your chin up. I am glad to hear that you made the doubting Thomas consultant sit up and listen. Go girl!!!

theresa4

Thanks sticky and sugar buttie sorry this wI'll be short as the finger and wrist pain is still very bad and feel like they are on fire :-(
The rash has definitely gone so I think I am right that the drug has left my system so I am not too worried about it kicking off. I am concerned about my upcoming ANTI cocktail before my infusion as the docs said no no no side effects but I've never heard of a drug without ?????
I'm still on a knife edge with regard to tearing up every two minutes never been so emotional.

Theresa

stickywicket

I do remember a friend telling me years ago that Ventolin, the anti-asthma drug, had no side-effects. They've probably found some by now though :roll: I hope it all goes well, Theresa.

tillytop

Hello Theresa

Sorry you are in so much pain again - but as you say, given that the rash has now gone, it does sound as if the drug is now out of your system, hence the return of the pain.

Do you know exactly what they will give you before your next infusion? If it's the same as the cocktail of meds which I have before the Rituximab, it consists of 2 paracetamol tabs, an I/V antihistamine injection and a half hour steroid infusion. For me, the antihistamine just made me very sleepy (which was quite pleasant cos it meant I could pass the infusion in a bit of a haze) and the plus side of the steroid infusion was the brilliant effect on my joints which lasted a good while afterwards. Because of my past history, I was also given another I/V antihistamine injection at the end of the Rituximab infusion. Not sure if you will have something similar, but thought you might feel less nervous if I shared that with you.

I'm not surprised you are teary and struggling Theresa - you are going through a lot and it has certainly been a stressful time for you.

Thinking of you.

Tillyxxx

theresa4

Well I'm in hospital and what a day it's been

The nurse was attaching the infusion no pre med steroid or anti histamine luckily j knew what I was supposed to be having.
Then I dropped off and the nurse woke me removing the drip I looked atx the clock think oh my I've been sleeping ages. Turns out the nurse hadnt seen I was supposed to be infused for 5 hours instead of one :shock:
Then ive started with a skin reaction so had another dose of steroid and antihistamine. Think I may have been right and it is the biologic I'm reacting to after all :roll: Other nurses are lovely

The itching and rash have calmed down again hopefully will stay down. It took 3 weeks to stop before. I never do anything easy do I

Theresa

skezier

Hi Theresa,

Just wanted to leave you a bucket of hopes and got everything crossed your feeling better about it all today. Will be in your pocket for the next infussion. hang in there. Cris xx