What next?

kmt297

Hi All,
Well I went to see my Consultant last Friday and she's stopping the Humira as it's not working well enough and the risks outweigh any benefit. I've already tried etanercept and infliximab (only other biologics licensed for PSA) and can't tolerate etanercept and infliximab didn't work well enought either. They thought I could be part of a trial of a new PSA drug (not sure what) but I've only just stopped humira and they won't accept me because they wouldn't be able to prove it was just the new drug that was working (rather than effects of humira) until I've been off it 3 months by which time the trial will be full. I am very fed up - feel very down and it took me a day to even tell anyone what they said as I can't seem to let myself believe it... The only other option is for my Dr's to apply to PCT for funding for a drug only licensed for other arthurs in case it might work (they've never had success with this in the past so not very hopeful about getting funding or it working if they did). I am devastated, trying to keep positive but it's so hard, keep thinking my life is just over, I've spent years hoping one day I'd get it back again, that this will go away with some wonder drug...

Sorry for such a long post, you lot are the only ones who I can tell all this stuff to.
KT

chile168

Hi KT,

So sorry to hear about all the problems and what you are going through. I have to be honest and say I have never heard of most of the drugs you mentioned but do know the feeling of wanting a wonder drug and hoping everything will be alright again.

I do hope you get the funding for the other drug and that they will work. What drug will you be trying?

Thinking of you and wanted to send you love and hugs x

Eve

woodbon

Hi,
First of all don't be sorry for your post. I have OA, so I don't have the experience of a lot of people on here, but you must be so very disappointed. I don't know what drugs are available but, if your consultant is willing to try and get funding, this might be worth trying, rather than just giving up. I'm sure someone who is much more knowledgable about your problem than me, will be along soon and lots of people on here have all sorts of problems.

Also, have you tried ringing the Helpline, number at the top of the page, they might be able to suggest something for you.

Whatever you do, don't give up hope, it may be that something will be on offer to help you.

Sorry I can't be more helpful, lots of love Sue

gickygawky

Hi there KT,

I am so sorry to read your news, it must be such a worry for you at the moment.

I realise it must be difficult, and it is easier said than done, but do try and remain optimistic while you wait to see if you can receive funding for another drug - there has to be a solution of sorts out there, hopefully your consultant can come up with a plan of action that can help you.

Unfortunately I have now words of wisdom to offer but I do understand the prospect of tnf's no longer working and I really feel for you being in such a situation. All I can suggest is that you keep strong and don't let this set back beat you down.

Please keep posting on here, we are all here to support each other and it sounds like you could really do with a friendly ear. I have found the forum to be a great help in the few months I have been on.

Kind Regards

Arna x

dorcas

Hi KT,

you are one step ahead of me. I've been on Etanercept, which had to be stopped due to reaction and drop in WCs; now just coming off Humira as it's no longer working as I've produced antibodies that stop it being effective.
About to start Infliximab, but like you, worried I'm running out of options. I have PsA too and my rheumy told me last week that he thought the new drug, Certolizumab, would be a good alternative for me but it's not licensed yet for PsA (Scotland, might be different in England?) and as arther is running amock I can't wait until then.

I posted a question to the helpline peeps this morning that might interest you too. I'm asking if after 3 Anti TNFs we can be 'moved' onto Biologics (assuming they are different and I'm not sure about that)

I know exactly where you're coming from and hope you/ me get some answers about what happens after the Anti TNFs.

What is your rheummy going to do? Is s/he going to contact the PCT about funding? surely they have to try!!!

No wonder you are feeling so low about it...... big hugs from me ((())) and hope there's better news on the horizon..Irisx

skezier

Hi K T,

I can only echo the others and send a hope that the funding issue is sorted soon and they find something to help you. Its hard to keep positive but as others have said it helps if you can and keep posting and let us know how it goes please. You take care and leaving you a ((( ))) Cris x

frogmorton

Oh KT

I am so sorry

Like Cris I have no suggestions other than to say keep posting and talking to us lot and we can at least listen.

Please do take care

Love and hugs

Toni xx

kmt297

Thank you all for your kind houghts and words. I am off work today - my chest infection that seemed to go away has returned with a vengeance, seeing GP later for more antibiotics... I told my manager and she assumed that I'll be off for a few days - I think she's probably right but I am due to go away at the weekend to the Lakes and can feel myself pushing to "feel well" for it. Feeling a bit down again - seems I can't win!
Thank you again for "listening"!
KT