Onto plan B, then
Mar. 10th, 2011 05:22 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
selenayMy appointment with the specialist did not go well today, sadly.
First, the good news: my haemoglobin is down, but not low enough to need a transfusion. Yay! Also, the odds of me having caught glandular fever are incredibly low, even on the prednisone, so he's not worried. Phew!
Sadly, that's all the good news.
The bad news is that while my colitis responds well to high-dose prednisone (40mg), it comes back very quickly when we try to taper the pred. Even at 30mg, I'm having bleeding and cramping and my blood results show that the disease is still active rather than in remission as we'd hoped. The inflammation isn't as bad as it was in January, but it's still there and bad enough to cause bleeding, which isn't helping my haemoglobin levels.
Ugh.
This means that while pred is working well, my disease is not going to let me get off the pred easily and the nice, tame maintenance drugs aren't going to work for me right now. So plan A is out of the window.
Plan B is bring in the big guns. We have two choices: azathioprine or Humira. The first one takes at least four months to do anything and that would mean at least four more months of high dose pred. GI Guy doesn't want me on pred any longer than we can manage because long term use has some fairly nasty consequences for my bones. Humira is a little more complex to work with, but has good results in UC and generally starts working fairly quickly. So we're going with Humira.
It's a biological drug that does something to one of the components of my immune system. Yes, this means immuno-suppression which is not ideal but appears to be the only course right now. It's injectable and they'll be showing me how to administer it myself. This makes it a much better option than Remicade, which is given by IV infusion and I really don't want that! Before we can start me on it, though, I have to have various vaccinations and I need to be screened for TB because with my immune system getting pounded even more than it has been on pred, a pre-existing TB infection will kill me. They've got to make sure that I don't have any active infections of any kind before I start the drug.
It also means that one hint that someone has a cold or flu at work and I'll be working from home. Every time. Argh.
I'm hoping that this is something that I'll only be on for a year or two and then maybe we'll be able to put me onto something less scary. It's not exactly brilliant news: my disease is severe, extensive and misbehaving. But at least there are still options out there that don't involve surgery and we'll be exploring them all.
Tonight I'm going to my knit group and I shall be indulging in something utterly evil in Starbucks. I feel that I deserve it :-) A friend will have the yarn for my next project waiting there for me and reports that it's utterly gorgeous, which should cheer me up no end. Who can be sad when you've got evil Starbucks treats and pretty yarn?
First, the good news: my haemoglobin is down, but not low enough to need a transfusion. Yay! Also, the odds of me having caught glandular fever are incredibly low, even on the prednisone, so he's not worried. Phew!
Sadly, that's all the good news.
The bad news is that while my colitis responds well to high-dose prednisone (40mg), it comes back very quickly when we try to taper the pred. Even at 30mg, I'm having bleeding and cramping and my blood results show that the disease is still active rather than in remission as we'd hoped. The inflammation isn't as bad as it was in January, but it's still there and bad enough to cause bleeding, which isn't helping my haemoglobin levels.
Ugh.
This means that while pred is working well, my disease is not going to let me get off the pred easily and the nice, tame maintenance drugs aren't going to work for me right now. So plan A is out of the window.
Plan B is bring in the big guns. We have two choices: azathioprine or Humira. The first one takes at least four months to do anything and that would mean at least four more months of high dose pred. GI Guy doesn't want me on pred any longer than we can manage because long term use has some fairly nasty consequences for my bones. Humira is a little more complex to work with, but has good results in UC and generally starts working fairly quickly. So we're going with Humira.
It's a biological drug that does something to one of the components of my immune system. Yes, this means immuno-suppression which is not ideal but appears to be the only course right now. It's injectable and they'll be showing me how to administer it myself. This makes it a much better option than Remicade, which is given by IV infusion and I really don't want that! Before we can start me on it, though, I have to have various vaccinations and I need to be screened for TB because with my immune system getting pounded even more than it has been on pred, a pre-existing TB infection will kill me. They've got to make sure that I don't have any active infections of any kind before I start the drug.
It also means that one hint that someone has a cold or flu at work and I'll be working from home. Every time. Argh.
I'm hoping that this is something that I'll only be on for a year or two and then maybe we'll be able to put me onto something less scary. It's not exactly brilliant news: my disease is severe, extensive and misbehaving. But at least there are still options out there that don't involve surgery and we'll be exploring them all.
Tonight I'm going to my knit group and I shall be indulging in something utterly evil in Starbucks. I feel that I deserve it :-) A friend will have the yarn for my next project waiting there for me and reports that it's utterly gorgeous, which should cheer me up no end. Who can be sad when you've got evil Starbucks treats and pretty yarn?
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no subject
Date: 2011-03-15 11:15 pm (UTC)no subject
Date: 2011-03-21 11:12 pm (UTC)One of the things that I really appreciate is that he's not making me feel stupid or brushing off my fears and worries. When I leave his office, I feel good and hopeful about what we're doing even when it's something scary like Humira. This disease is confusing and frightening and he's very good at helping me see it clearly and feel better about my ability to cope with it.
I'm very glad that he's the guy that I got sent to!
no subject
Date: 2011-03-10 09:58 pm (UTC)no subject
Date: 2011-03-10 10:47 pm (UTC){{{hugs}}}
no subject
Date: 2011-03-10 11:15 pm (UTC)*HUGS*
no subject
Date: 2011-03-10 10:36 pm (UTC)no subject
Date: 2011-03-10 10:48 pm (UTC)And let's all keep our fingers crossed for the Humira!
no subject
Date: 2011-03-11 07:40 am (UTC)no subject
Date: 2011-03-11 10:36 pm (UTC)no subject
Date: 2011-03-11 09:44 am (UTC)How come immunosuppressents help?
no subject
Date: 2011-03-11 10:38 pm (UTC)no subject
Date: 2011-03-12 09:23 am (UTC)no subject
Date: 2011-03-11 01:37 pm (UTC)no subject
Date: 2011-03-11 10:38 pm (UTC)The yarn is gorgeous :-)
no subject
Date: 2011-03-11 05:26 pm (UTC)> It also means that one hint that someone has a cold or flu at work and I'll be working from home.
There is only one sensible solution.
Hope the yarn and Starbucks helped. Not in the same cup, obviously.
no subject
Date: 2011-03-11 10:40 pm (UTC)The yarn and the Starbucks cheered me up a lot so they were just what I needed. Now I'm having a nice weekend with nobody trying to poke me, prod me, turn me into a pin cushion or irradiate me. So that I'm nicely rested to do it all over again next week :-)
no subject
Date: 2011-03-12 01:06 pm (UTC)