Infliximab-Is It Worth It?

[*Niki*]

You poor thing. You truly are suffering. I do hope the docs come up with more than they have done so far.....

SJ

Thanks SJ

My derm will not be pleased if, when i see him, i'm still ill. The gp's have fobbed me off with one thing & another, 1 gave me allerief medicine for the possible irritation in my throat which could be causing the breathlessness-yeah right!!
I purposely waited 2wks before i went back so they couldn't say "give it time"

As everyone knows all the possible effects of the biologics are not known, so this is "one of those things."  I'll not be repeating the experience i can tell you.

I'm on no medication at the mo, but i think it's back to trying Tacrolimus as i've been given the all-clear by the kidney team (it caused kidney damage 2 years ago & was immediately stopped).

Niki

[Em_K]

Oh nikki, how terrible I have been thinking about you heaps hoping that by now you would be feeling better! Seriously feel for you sweetie! How different two responses can be.
 Since you have become so unwell I have been taking a long hard look at persuing having Infliximab including all the the known pro's and cons and the prospect of possible unknowns too. It's truely been driving me up the wall but firmly decided I definately want to have it. I am having really tough time and can remember clearly the effect clear skin had on me. Also added into the eqasion that I didn't have any noticable side effects, although it's true that I could be suffering from unknown damage but I feel it's a risk I'm willing to take.
Anyway (sorry) I had GREAT news this week after several apps with several different consultants I have been accepted  on a clinical trail to start a new course of Infliximab on Dec 4th and I can't wait!!! It's just coming into summer soon and this would be fantastic for my confidence also hoping to start new job which has been delayed due to time off sick.
I just wanted to post this so that people who being asked to consider Infliximab can hear a different side of the story. It's such a difficult choice with the new biologics as they are so new and we don't know side effects and what the future might hold after having them. Complicated further by the fact that we all react so different to each and every treatment that we have ever tried and subjected ourselve to.
Oh I feel for you sweetie and hope derm app goes well and they can come up with a plan that suits you better and can be just as effective as Infliximab was at first for you.
I am sending 'hope you fell better soon' hugs take good care
 love Em

[*Niki*]

Fantastic Em!    I'm really pleased for ya.
I agree there are always 2 sides, trust me to have the negative LOL
I'll be better soon, i'm sure. Whatever this is it has to go sometime & you know Graeme, he'll have me on something, altho' my p is raging it's not as bad as you would think, thank god infact with no meds & all this infection it's done good to have stayed away so long.
I'll keep you posted on what the lovely Graeme has to say  
And good luck with your new job

Niki x

[*Niki*]

The "official" results from my chest x-rays are; infection in the left lung, a relapse the gp called it - a total c*ck up is what i'd call it.  I asked if it was pneumonia & she said (great this) because i know i've had pneumonia & got it checked it hasn't had the chance to become pneumonia but had i left it any longer it would've been. She's given me more antibiotics to take for 14 days that's on top of the 10 day supply of the others & the steroids & i still feel like i'm breathing thru' muslin
Have had a bad day today & am feeling really down & the p, well that's flaking beautifully & is a smashing cerise pink but hey - ho.

Niki

[Em_K]

Oh sweetie!!
Can't believe they could be so sh*t if they had not left you so long you probably wouldn't be in this mess?! The joys of the cra**y NHS sounds like you havng a terrible time. and bet you seriously angry too it just shows the GP's don't appear to have any understanding about the new treatment such as biologics and the effect that this illness is going to have on your mental and state and eventually your p. Are you able to make a new app with Greame and maybe be admitted to derm so you can get proper treatment for chest and p and also most important rest and regular reviews by medics?
Oh from the bottom of my heart I feel for you, you sound like you going through a hellish time
Again sending BIG hope you feel better soon hugs
 Keep in touch hun
Em x x

[*Niki*]

It's a joke innit Em, I was originally told to ring Monday afternoon as the doc hadn't had the chance to read the report!! I rang back & expressed my concerns that i'd been ill for 7wks, the radiographer was concerned & i didn't want to be left wondering over the whole weekend.  When the gp rang she knew the derm team wanted a copy of the report because of the Infliximab.
I see Graeme on the 20th so only a week to go & as for being admitted well i'll have to discuss that with him, if i'm feeling the same as i am now it'll be a definite - i'm so down & at the mo' don't seem to be able to pull myself round.  
Good news is my cough is no longer keeping me awake at night but i still can't take deep breaths without it hurting but i'm hopeful once the antibiotics kick-in it'll clear up this time.
My next worry is all the antibiotics i'll have had, will i run the risk of resistant bugs?
And they say life begins at 40!!  Pity i can't wind the clock back to March & miss my birthday  
Love to you
Niki x