Infliximab-Is It Worth It?

[*Niki*]

I've had 3 infusions of infliximab, the 1st one was in June as an in-patient.  My 4th one was due 6th Oct.

1 week after leaving hospital i pricked my finger on a piece of chicken wire & ended up at A & E with a hand the size of a blown up rubber glove!

My 2nd & 3rd (on 1st August) went without injury until 25th Sept i started with a pain under my R shoulder blade, when it hadn't gone 2 days later i assumed i had a chest infection so saw my gp who then sent me to A & E to rule out a blood clot in my lung.
My blood test came back positive for clotting so i was given a blood thinning injection with a VQ scan booked for the day after,  all was clear & i was told it was probably a viral infection & to take paracetamol.

That night i was awoken in my sleep by what can only be described as "knifing" pains in my chest, back & neck - back to A & E (different hosp)- An ECG showed it wasn't a heart attack, the chest x-ray showed infection. I was given antibiotics & sent home.

I couldn't lie down, sleep or breathe, so back to A & E again (this time to the original hosp)!!  Another ECG was done, again it was NOT my heart. I was given morphine for the pain - what an experience!!  Had various bloods taken including one from an artery (that hurt!)

The outcome - pneumonia & pleurisy (the reason for all the pain) , i was put on oxygen & nebulisers (as well as the antibiotics) & kept in overnight. Saw my gp the day after who diagnosed thrush in my throat caused by the steroids & all the antibiotics.
I'm still not right now, i still have pain (now in my L side) & a mouthful of ulcers but  my breathing has improved (there's something to be positive about)

My dilemma is;

I've had P 33 years and know what to expect from it, this last bout of infection really scared me & i don't ever want it repeated.
I have never experienced pain like it & the feeling of breathlessness was v.v. frightening.

The clearance (not total) i get from the Infliximab lasts only until the next infusion & i'm seriously thinking it just isn't worth it.

Have i just been unlucky or is this the start of things to come?  
Should i carry on with the infusions?

I really don't know what to do now.  I know the infliximab isn't the CAUSE of the infection but it is the CONTRIBUTING FACTOR. 

I'd be really grateful to hear what you think & what you'd do if you were me

Niki  :-/

[chrisis]

I'm so sorry to read whats happened to you on infleximab. Its really difficult to know what to do. You are ahead of me on treatments. I have trialled raptiva to no effect and am shortly to go on enbrel (I hope, I've just had an iffy TB test so may have to go on 3 months of antibiotics first)
Have you talked to your derm .about your options. I remember that you are sun sensitive. Would it be possible to come off infleximab for the winter, maybe use Cyclo. and then try it again next summer when you really need something effective?
 :-/
Please let us know what you decide.
Take lots of care
Chris.

[*Niki*]

I'm so sorry to read whats happened to you on infleximab. Its really difficult to know what to do. You are ahead of me on treatments. I have trialled raptiva to no effect and am shortly to go on enbrel (I hope, I've just had an iffy TB test so may have to go on 3 months of antibiotics first)
Have you talked to your derm .about your options. I remember that you are sun sensitive. Would it be possible to come off infleximab for the winter, maybe use Cyclo. and then try it again next summer when you really need something effective?
 :-/
Please let us know what you decide.
Take lots of care
Chris.

Hi Chris

I've seen my lovely derm today; he was abhorred at the lack of care i'd received & is contacting the dept. concerned for their report.
He's also agreed to leave me alone with no pills for 6 weeks & also said, laughing, "Nothing ever goes smoothly for you Niki, you must be cursed!"

I can't have Cyclo or MTX because of side effects but we may try Tacrolimus again as the kidney team gave me the all clear to have it again earlier this year.
I'll know more when i see him next time but i definitely don't want any more infusions  

Niki  

[*Niki*]

I'm now into my 6th week since my first symptoms started & i'm still unwell  
The pneumonia/pleurisy has gone & so has the bronchitis i was diagnosed with 2 weeks ago but that seems to have left me with a very productive cough which keeps me awake at night. The past 3-4 weeks i've been experiencing strange aches that affect different parts of my body; 1 day it'll be my thumbs (different joints) then it'll be a toe, a shoulder, a wrist; infact anywhere, each lasting 2-3 days & there's always more than one area affected at a time. When i first mentioned this to the gp's they said it was "muscle aches." The affected joints are red, swollen & so tender to the touch, my toe actually felt like it was broken & i couldn't move it. I'm waiting til i see my derm on 20th Nov, see if he can shed some light on these strange aches.

As you can guess, i'm totally peed off & will never have Infliximab again.

[Em_K]

Oh my friend Nikki! It sounds like you having a seriously terrible time of it!! Really feel for you! I have been racking my brains with what you could\should do and it's so so difficult. No-one can really advise but this is where I am. After having 10 infliximab infusions over 18 months in the UK and being brilliantly clear for the first time ever and experiencing freedom that I'd never experienced before and with luck no side effects I would seriously sit down and have more infusions tomorrow if it were possible. Dilemma is I am living in Melbourne and unable to get infusions here unless accepted onto clinical trial.
I feel for you and others like us that are near or at the end of treatment options they say that the inflix isn't the cause but a contributing factor but just think isn't that the case with all the rubbish meds we have taken or have an option to take? It's just so difficult for our hopes to be raised then taken away made more difficult with the biologics coming along to try when something like you are experiencing with physical illness, side effects and consquences and we ask ourselves 'did the decision to have the infusions cause me to become this unwell?' or 'is it worth me taking the risk to have better skin?' and the guilt/frustration/stress or upset that this can bring. Particularly when even the derm can't give you straight answers because they don't have them either! Truely, truely frustrating and with time I think it's gets harder and harder to sort out in your own head.

You asked if Infliximab-is it worth it? Well for me it most definately is. To experience again a period of rest without fight and upset I keep my fingers crossed to be put into this clinical trial!

Sending big hugs from accross the world and hope to catch up properly soon!!

Em [smiley=lilac1.gif]

[*Niki*]

Bless ya Em luv. We are on opposite sides on this one, no more for me i'm afraid. I was only clear for the period between infusions & for me it wasn't worth it
I know what to expect from my P but this - this is all alien to me. I can function to a certain degree with p,  i can lie down to sleep & most importantly i can breathe. I'd much rather have my p & be ill because of it's effects than to experience pneumonia/pleurisy & all it's effects again

Love to you

Niki x

[*Niki*]

Bless ya Em luv. We are on opposite sides on this one, no more for me i'm afraid. I was only clear for the period between infusions & for me it wasn't worth it
I know what to expect from my P but this - this is all alien to me. I can function to a certain degree with p,  i can lie down to sleep & most importantly i can breathe. I'd much rather have my p & be ill because of it's effects than to experience pneumonia/pleurisy & all it's effects again

Love to you

Niki x

I'm now into week 7 & am still breathless & coughing all night which keeps me awake, been given more antibiotics & steroids & had 3 chest x-rays, radiographer said i have fluid on my LEFT lung (the pneumonia affected the RIGHT)  
I get the "official" results from the doc on Friday & the p is raging - as you can guess i am extremely miserable  

[Guy]

Hi Niki

Sorry that things are so awful - I guess its not for you.

But something will be  

[*Niki*]

Hi Niki

Sorry that things are so awful - I guess its not for you.

But something will be  

That's so very true, i just have to find it

[SJ]

 

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

SJ