My simponi trial is over

Hi everyone, not been on here in a while, so hope you're all doing well!

So my year long Simponi trial finished, my last injection was four weeks ago. The trial nurse told me that they saw a 47% success rate, so I guess I was a lucky one. I've not been doing amazingly the last couple of months, (blood, loose, more urgency) but nothing that a quick round of steroid enemas won't fix, I'm sure.

My GI wanted to switch me to Entyvio now, as I'm not in 100% remission and the throwing up still happens (though not as frequently). But I said I want to stay on Simponi. There's a finite number of biologics I can run through before surgery, so I want to milk Simponi for all it's worth first. Plus switching meds is too stressful for me right now.

A few months ago Simponi was approved for use for UC in the UK, but it's still not simple to get hold of. As you'll know it's very expensive, so the hospital has to apply for funding from the clinical commissioning group, which will take weeks, and there's no guarantee.

"Not that we want you to be sick", my nurse said, "but let's hope that your latest bloods and calprotectin come back bad. The sicker you are, the more likely it is that they'll give you funding".

So I'm in a bit of a weird position, hoping for bad results :p But I'm sure I'll get it. From the trial results, it's clear Simponi helped me a lot, so they have to take that into account.

I also have to see a haemotologist next month, as last time my lymphocytes were a bit high... and obviously with azathioprine we have to be careful.

Aza doesn't work on me anymore, so until I get funding, I'm essentially medication free for the foreseeable future. Let's just pray I don't completely deteriorate in this time! But overall, I'm feeling positive, and blessed that my nurse was able to get me on that trial.

That sucks. Have you tried speaking with the manufacturer of Simponi? Maybe they can give you some free samples of Simponi to hold you over until you get approval, it is in their (and your) best interest to keep you on Simponi. When I first started Humira my GI had samples of Humira for me to take home until my insurance approved Humira.

Do you have any other health issues like Arthritis or skin issues because sometimes GIs would get around approval issues for biological meds by using the biological for the other issues.

There are more and more biologicals coming out each year, I am currently on Cimzia (took my 2nd dose last night) and it works great for me but unfortunately I get the same side effects(neuropathy) that I get from all the other Anti-TNF biologicals so I'm going to have to discontinue it soon. My GI said that he will write me a script for Stelara which was recently approved for CD by the FDA.

It's not fair that you have to stop the Simponi.

Dikid said...
Keith, is insurance covering Cimzia even though it is not approved for UC yet?

Yes, my insurance is covering it but I'm not exactly sure why, but my 2 guesses are:

1) My GI wrote it up as CD because I have Chronic Pouchitis which is basically inflammation of the small intestine of which my j-pouch is built from. Sort of like what I suggested in being creative about the diagnosis to get the Simponi covered. Sometimes when I am talking to my GI he interchanges the words Pouchitis and Crohns in the same conversation.

2) I have used most of the other approved UC biologicals except for Entyvio. So maybe they approved it because I've used most of the others.

They treat pouchitis like the way they treat CD and no meds have ever been approved for pouchitis. I'm kind of in medical limbo with the dx of chronic pouchitis.

By the way, I notice results from the Cimzia within about 24 hours and it works really well for me. My pouch is working the best that it has since my surgery.

malaika said...

I don't think I can contact the drug manufacturer, doesn't really work like that here... like if I had private insurance maybe, but I'm pretty sure I'll get approval on the NHS soon, and then I won't have to pay a penny for the injections.

If it's going to take some time (like a month or two) then I'd give Simponi a call and explain the situation about being in the Trial and ask if you can get some free samples until your hospital can get it approved. www.simponi.co.uk/Public/ContactUs