Really cheesed off!

[Welsh-bird]

Oh well, here goes...
Been flaring now since Feb of this year, 4 hospital admissions, and seem to be on an endless search for the 'right' drug, or at least one that I can tolerate! My UC does appear to be getting back under control, BM's down to 4-5 a day, bleeding stopped and no more urgent night time dashes to the loo. However, Ive now developed upper GI pain and intermitent pain on my right side, feeling bloated and vomitting. Never had this before so made an apt to see my GP. He thinks the preds may have damaged the lining of my stomach and has increased my Lansoperazole to 60mg a day. Sent back to the Gastro last Thurs and again my LFT's have started to increase (up to 79 from the previous weeks 18), and he's sure this is another reaction to the 6MP. Today have woken up with a sore mouth, and some ulcers, again another new symptom for me. Gastro last week decided that I need a white blood cell scan, so waiting on that date, but in the meantime he also thinks the UC we've been treating for 11 years may well be Crohn's or at the least Crohn's Colitis. I've just really had enough of this endless c**p!!
I'm having weekly blood test at the mo, due to the probs encountered on Ciclosporin, Azathioprine and now 6MP, but my IBD nurse has yet to contact me with this weeks result. Have rung the sec explaining that I really do need to know if I am to continue on my current dose, decrease it, or stop it altogether as I had to last month. Still no reply. I feel like I'm constantly having to chase them to get somewhere. I just want it all to go away, or at the least, go into remission sometime soon!
Sorry for the rant...but could just scream ARRGHHHH!!!

Thanks for reading,
And xx

 

[beth]

Sounds like you should be making noises about Remicade or Humira to your consultant...

 

[Welsh-bird]

Hi Beth, I have tried the Infliximab argument, but he keeps telling me that NICE guidelines won't allow it for UC as Ciclosporin is the last resort drug used and recommended. If the diagnosis is changed then I may then at least get a chance to try these drugs.
Sometimes, I just feel like I'm banging my head against a brick wall, and its starting to hurt now!! Will keep fighting though, this bloody disease is not going to win!!
Hope you are well.

 

[Lisa]

I'll bite - what are NICE guidelines?.....if you go to the Remicade webiste, it states right there that the drug is used to treat UC.......

 

[lynx]

They diagnosed me with UC in 2006. Was taking asacol 12 pills a day...then had a huge flare ...still going on...this summer ...doctors swear up and down now its Crohns. The doctors also say that really BOTH diseases are treated pretty much the same way. That is why I am confused why they would not allow you to try Remicade or another TNF. Sounds more like lame bureaucracy rather than sound science.

 

[FireflyX]

This might sound ridiculous but if you were desperate you could always threaten to buy medication off the black market and if the doctor had any sense they would prescribe you something rather than allow you to inject yourself with something that could be poison. I was diagnosed 3 years before they tried a TNF with me. I went into remission in a matter of days. They should be offered to all UC and Crohns patients.

 

[Welsh-bird]

Pasobuff- NICE (National Institue for Health and Clinical Excellence), is the body here in the UK that decide on what drugs are authorised for specific conditions. Although Remicade is licensed for the treatment of UC, due to its cost, Ciclosporin is still the drug of choice here as last line treatment. I've been arguing the case since I became toxic on the Ciclo back in June and when it was stopped, but I'm still hitting a brick wall. Rather than my Gastro fight the health dept for the right to the drug, it is more cost effective to remove my colon and have an Ileostomy, and then in theory I'm disease free (if it comes back UC that is!)

Lynx, agree whith your last statement whole heartedly. I'm now hoping to have my diagnosis changed once the white blood cell scan has been done. If it then comes back as CD, they will start treatment on an anti TNF asap. Would love to just sit down with these 'men in white coats' and have them explain why when there's a medicine out there, that may prove to be the 'one' I've been looking for, it's being denied!!

 

[Welsh-bird]

Firefly,- As ridiculous as it sounds, you may be on to something there! I'm just over the whole load of b/s and beaurocracy that surrounds the NHS these days. If thesse diseases are so closely linked and are treated the same, then I fail to see why we are treated differently.

 

[lynx]

ALL the best to you I hope you get the treatment you need. I know it is no fun fighting with people while you are ill especially when those you are fighting with are following a protocol that is based on a bean counters assessment. I wonder if the long term costs of having surgery would be greater than the treatment with the drug? Especially if you indeed have CD instead of UC. I wonder if the bean counters have thought of that. Again best of luck!

 

[Jennifer]

Oh lord. I recall my insurance refusing to pay for Asacol because they claimed it wasn't needed because Azulfidine was just as effective and cheaper. UHHHHHHHHHH... you serial? Azulfidine made me sick to the point that they thought I was allergic to it. And to this very DAY they still push for that awful drug that not only made me sick but makes many others sick as well. I don't care how expensive the drug is, I need it to live with my guts intact, thank you. So I feel your pain of being denied a drug that could possibly help you. After request after request after request by my GI doctor, my insurance finally decided to pay for the drug I needed but every now and then tries to weasel that old drug in. I'm sorry you're dealing with this but I'm also glad that you're feeling at least a little better. Keep contacting your GI for answers (no more waiting for the nurse to call). I know hounding them sucks and is frustrating but sometimes it just has to be done.

 

[beth]

Oh crap Welsh-Bird. I vaguely remember back to my diagnosis the consultant said something about having more drug options with Crohn's.

If you're having upper GI pain, milk it for all it's worth and get the diagnosis changed....

 

[Lucy]

Welcome Welshbird to the forum. I agree with all the above. They have to do something for you that's just crazy not to give you somthing that might help. I hope you can start feeling better soon. Hang in there and stick around and keep us posted.

 

[Welsh-bird]

Hi guys, thank you all so much for the postings and advice. Much appreciated.
Wishing you all a happy weekend,
Andrea x

 

[Astra]

Hiya Andrea

I'm sorry, but this is bollocks!
My friend has just been approved Infliximab (Remi), she has UC, and I was offered Humira and Infliximab, but declined, saving it for the future.
If this depends on where you live, (postcode lottery!) then go to another hospital, this is your right, to choose where you are treated.
here read this
http://www.nhs.uk/choiceintheNHS/Yourchoices/hospitalchoice/Pages/Choosingahospital.aspx
Persist and Insist, do not take this ****! They think they have us by the short & curlies, WRONG!!
Do your research, armed with ammo, then attack!
good luck
xxx

 

[Welsh-bird]

Hi Joan,
I seem to have been having this fight for months now. The last piece of info I was given by my gastro regarding Inflix and UC was -

''NICE looks at how well treatments work, and also how well they work in relation to how much they cost the NHS. There was evidence that Infliximab would not represent value for money when used to treat peolpe with moderately to severley active UC...this means that for the time being Infliximab should not be perscribed routinely on the NHS. Your doctor should talk to you about other treatments available on the NHS''

I think he's taken this from the NICE guidelines, which I then assumed meant that it was a national policy, but if you're friend is having this, I should change the train of thought to you being correct re postcode lottery!

Thanks for this...roll on Monday morning and a trip to see the secretary. Not leaving until they give me an apt to see him again. Time to declare war. What a load of BS they've lead me to believe.

Andrea x

 

[Astra]

Abso bloody lutely Andrea!

You go girl! Kick some arse!

xxxxxxx

 

[Welsh-bird]

The way I'm feeling right now Joan, I could go and camp out waiting for them to arrive Monday morning (bouncing off the walls comes to mind). Due to have a white blood cell scan in 2 weeks to check how much inflamations in my GI tract, he then said if its Crohns I can start Inflix asap...don't care what it comes back as now, I want this drug before I loose my whole colon. At least then, if I'm faced with surgery I know I've given it the best shot!
Time to start Googling - I will be so clued up and armed he won't know what bloody hit him!
Thanks again, and hope you have a good weekend

And xxx