In which the super expensive drugs aren't quite as good as we'd hoped

[selenay]

So, today was my appointment with Awesome GI Guy. He's still awesome and lovely, despite having to confirm that I'm no longer in remission.

Damn.


I've been feeling cruddy and super tired for the last week, started bleeding a couple of days ago and have lost four pounds in the last ten days. So it wasn't exactly a surprise, but still a little demoralising to have it confirmed that the inflammation is ramping up again so it's not my imagination.

We're continuing with the Humira. Even leaving aside how long it took to get the stuff, it must be working to some degree because I'm not feeling mega-bad the way I was in January. If things start looking like they're getting out of control then he wants me to re-start the prednisone. I'd prefer not to because my back feels so much better on it that he may never get me off it again, but I've agreed because I'm not stupid and know that it may be necessary.

Today I had blood taken to check my levels (inflammatory markers, WBC, iron, haemoglobin plus a bunch of other things) and screen for HepB. Not because I might have it, but because it's a necessary part of the protocol for starting azathioprine (Imuran). I love the way that each medication has a different disease they must screen for before starting.

This is the med we didn't use earlier in the year because it has more potential side-effects and takes three or four months to reach therapeutic levels in the body. I'll be back to see Awesome GI Guy next week and, if everything checks out, he'll be getting me started on the Imuran.

It's not exactly the best news in the world and I'm not looking forward to the potential side-effects (let's not have those, OK?) but Awesome GI Guy was comforting and cheered me up a lot despite the news. We're still determined to keep my colon and he's still confident that I can.

It does mean that I'm back to the low-fibre diet, though. Argh, I'd been enjoying my multi-grain bread!

One thought that I've had is that, just maybe, this might help my back, hips and ankles. If the source of all that pain and inflammation is the immune system and the Humira isn't suppressing it sufficiently, then maybe the AZA will get the last of my over-active immune system to stop misbehaving and my joints will start to recover as well.

It appears that I have one of those cases of ulcerative colitis that really does not want to cooperate and stay in remission *sigh* At least there's a reason why I'm so exhausted. It's quite annoying when your mother has more stamina than you do.


You can imagine how irritated I felt to get back to work and find that my frequently-absent-for-no-reason colleague had decided to leave and 'work from home' for the day. Everyone knows that he is actually using that as a sneaky way to get a part day off (as he's used up his sick day for the month already) and it annoys me that I'm doing my best to keep working and contributing despite technically being sick again while he plays the system. It will bite him one day, we all know that, but today of all days it really got to me. Why do I keep trying to be a good worker when someone like that slacks off and sees nothing wrong with playing hooky at all opportunities?

Oh, yeah, I'm trying to be the responsible one so that I've got support when I really *need* the time off. Damn my sense of duty and loyalty.

In more cheerful news, my horrible nightmare project still sucks piggy wonks but the manager took the entire team out for lunch today and it was nom. I didn't even flail on food ordering, although I dutifully avoided the salad options (even though they looked gorgeous) and carefully only ate until I was pleasantly full rather than working to clean my plate. It was good to meet the other victims members of the team and spend some time just nattering and enjoying ourselves. It was noticeable that nobody discussed the project. Possibly because it's the kind of project that ruins appetites and induces alcohol drinking.

I think that I'll spend the weekend resting. I'm feeling very worn out right now.

Comments

[sauscony]

Hi, I haven't introduced myself to you yet. My name is Jennifer and I have Crohn's. I'm on Imuran now and I feel blessed that I've never had any bad side effects from it. I've been in remission now for a few years thanks to the Imuran but I had to get really sick and have a horrible doctor before I found my current GI, who prescribed it to me. I think it took me almost a year to start to feel better, but even so I have so many narrow strictures that I will be on the low residue diet permanently. I've also had a lot of joint pain in the past, and for the most part now, I'm doing a lot better. I did have some major hip pain this spring when I started walking my usual three miles a day again and I was a bit worried but then I bought new walking shoes and instantly felt better. I learned my lesson and will buy new shoes at the beginning of every walking season from now on.

Anyway, I just wanted to offer my support and encouragement. I hope you feel better soon.

[fahrenheit-f430.livejournal.com]

Aww, man. *glomps*

[gmul.livejournal.com]

In summary, Bugger. But Yay for AGG (AGIG? whatever)

Have a restful weekend!

[paranoidangel]

*hugs*

[wadjet-theperv.livejournal.com]

That's just not fair :o( Hope the new stuff is better *hugs*

[nic]

So sorry to hear this. *hugs*

[selenay]

{{hugs}} It's going to be fine. Awesome GI Guy promises :-)

[selenay]

AGIG possibly :-) Weekend was very restful, thank you! Still very tired, but at least I'm not more tired than I was :-D

[selenay]

Thanks, hon :-)

[selenay]

Thanks, hon. The new stuff doesn't sound nice, but hopefully the combination will do the trick.

[selenay]

{{hugs}} Thanks, hon.