Tuesday, March 10, 2009

More room

The rheumatologist changed office suites to one he had remodeled. There's lots of wheelchair turning space in each exam room and nice tile floors without wide bumpy grouting. The new lab is huge, with a wall of windows. That's got to be so much nicer for the tech, who was in a very small windowless space before. I forgot to try the front door myself to see if I could--habit tells me to wait for someone else, but it might have been one that stays open. Regardless, the door is now clear glass so someone can see me or others if we're waiting outside--we could see someone on a walker who needed help when I left. Though there wasn't a chair pulled out for a wheelchair space, I was able to easily sit on the end of the row without really being in the way and could reach the table with magazines on it.

It's nice to be able to move freely in a doctor's office and not worry I'm going to bump a wall or that someone will trip over me and hurt themselves when spaces are really small. This will be good for a lot of people, including employees and patients who bring someone or a few someones with them. I should also point out that this is one of the few doctors I know that has a exam table that can be raised and lowered (the 39% apparently aren't evenly distributed). It's nice to have someone think about accessibility. That's a rarity.

He brought up the Enbrel idea again, specifically when I mentioned service dog. I don't know. I'd forgotten that my reason was pneumonia that didn't go away easily or other infections (post-anesthesia I forget some things that were immediately recalled before; when he mentioned TNF blocker I momentarily had no idea what he was talking about. Once refreshed the memory is there again). It's an expensive drug. Really expensive. I think we should wait and see if we have insurance in a month first. Drugs like this bankrupt the whole medical system. It does metabolize through liver. There are other big potential adverse effects, though many people do benefit.


Elizabeth McClung said...

Enbrel is Humaria, or is it the one before Humaria? You really need to talk to Lene, just send her an email and talk about why they want to use it and what it will do -she gave me all the dish on Lyrica (that it will make you want to pee more and give you protein cloud in your pee) as well as how like in an HOUR your pain is gone and you are praising the diety Lyrica...till you have to pee. Since I NEVER feel the need to pee and have to be asked, "did you today?" then not a problem for me.

Interesting differences on offices, here in Canada with no disability act, I counted 27 specialist, doctors and other meeting places for people with extreme health conditions before I ran into the FIRST wheelchair door button, on a facility they are closing down in 7 months. Haha.

Yeah, lots of liver tests as everything goes through the liver; my meds are going to kill off my liver in a few years, which seem to fine with my doctors (tells me a lot about what they expect my lifespan to be, huh) - but you have to think the long haul. Talk to Lene, seriously! IF it is a rheumi drug she has taken it: 40+ years of RA and she is still sort of going (a bit like the tin solder woman with her shoulders but still going!). Okay, you have his opinion, how about going to the people with service dogs and see what they say about what a dog CAN do for you? I take it you aren't going for a service Monkey? Or mini horse? I am not joking, those are possibilities.

I did wish I had a service dog on...um...check calendar: sunday - when security kept trying to move me because I was in seizure and scaring the kids. Dog says "No"

Disgruntled Ladye said...

There's no specific route for treatment in the US. It's typically up to the Dr. and insurance companies to determine which is more likely to work.

On the liver -- the TNFs aren't as hard on the liver as MTX or other DMARDs. Though most recommend you take another DMARD while on a TNF inhibitor to prevent the body from building antibodies to the TNF inhibitor. Yay autoimmune diseases. Can't even treat the dang thing without having problems.

On Enbrel -
It's typically one of the first TNF inhibitors tried. It is the oldest of the 3 currently available. It's a once weekly injection (that stings like crazy). It is also very expensive. Even with my insurance, I paid something like $100 for a month's worth. I think there may be some flexibility with dosing, but not as much as with Remicade.

Humira -
The other injectable TNF inhibitor. It's administered every 2 weeks. I think it was the first to get FDA approval for spondys (PsA, AS), but I'm not positive. If you don't respond at the initial dose, it can be increased to every week. If you don't respond to Enbrel, you might respond to Humira or Remicade.

Remicade -
IV infusion. Derived from mouse protein. Has a higher risk of allergic reaction because of that, but most are pretty mild and can be pre-treated with benadryl and steroids at future doses. Remicade is very flexible, but you have to go spend a couple of hours at the doctor every few weeks. If you have crappy veins, this can be a nightmare (though infusion nurses are the best I've seen at hitting a vein, even if it's tiny, rolls and is deep).
Initial dosage is usually around 3 mg/kg every 8 weeks (after loading doses at 0, 2, and 4 weeks, I believe). Dosage can go to as high as 10 mg/kg every 4 weeks (that's where I'm at).
I was a nonresponder to Enbrel, so I switched to Remicade. It's finally working and I have my life back to almost normal. The existing damage is still there, but it's not getting worse.

Depending on how your insurance is structured, Remicade could be a LOT more expensive than Humira or Enbrel. My insurance pays 100% of infusion therapy, but many don't. Let's just say if you're at high doses at frequent intervals, 10% of something like $5,000 ain't cheap.