Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group The road to Humira

Hi people
I haven't been around much lately but here is a quick (gory) update from me.
Some of you might recall that my DX was recently upgraded from UsPa to AS. My SIJs have deteriorated a whole grade (NY criteria) in only 2 years, despite me believing that I was doing really well on SSZ. I just completed a 3 month trial on a higher dose of the SSZ but my pain levels have been creeping up again. So my rheumy decided to try a new approach.
I had the cortisone shots in my hips (on my birthday!). Wow, that was painful, but then 2 days later, my hips felt fabulous!
Then my 2 little boys came down with gastro a week ago, it was a horrible mucky week, and then when the last set of sheets had been laundered and ironed suddenly a huge flare hit me. I can barely walk this week, the pain is like nothing I can recall in the past. I am popping codeine and its not doing much. I feel like metal objects are stabbing into my lower back and thighs.
My rheumy prescribed a weekly methotrexate pill which I had always planned to avoid. I took it and then started vomiting yesterday but cant tell if its a reaction to the MTX or just my turn with the gastro. I dont really understand how this is supposed to help me, given that I dont have cancer. If the MTX doesn't help, she is planning to start me on Humira. Its a lot to take in right now, especially when I am hobbling like an old lady. I think I need to have completed the MTX trial in order to qualify for the Humira under the Australian pharmaceutical benefits scheme.
Thanks for listening, it jus helps me to cope, if I can write all this down.
Hugs to all
Felicity

Hi Felicity,
Sorry your going through a rough time at the moment hope you can find something that works for you soon.


Kevin

Hey Felicity,

Sorry to hear you've gone downhill - and that your house has been under siege by the gastro monster!

I am now at the 8 week mark with SSZ - and have *finally* had 3 days in a row where I didn't feel like puking for most of the day! (just a little bit in the morning...)

Maybe try to MTX again - with an anti-emetic, maybe - Stemetil or Maxalon - altho' I can see the irony in taking a pill to counteract the side effects of *another* pill!

(I have toughed it out to date - just like being pregnant again - where I puked/felt nauseated every day until I gave birth... but if next week is lousy again, I think I will try an anti-emetic...)



Hope you can rest a bit in the upcoming school holidays,

Hi Felicity, just wanted to let you know I'm thinking of you as you make you way through this awful stage. I do hope you are able to start the Humira soon and get some relief.

Cindy

Hi Felicity,

I hope you find what works for you soon.

John

Hoping your pain subsides.I went through all the little drugs also befor i coould get authorized from my medical insurance,Now i am on Humira and it is working quite well for now.Still a little pain but nor excrutiating.
Best to you.

John

When I was on MTX, I took it right before bed with something to eat. I think I slept through the worst parts. Then the next day I felt like a zombie, but only after the first few doses.

Hope you feel better soon. It sucks when you can't tell if you are sick from a bug or a med.

I started on a very low dose of mtx because of my fear of vomiting. So I only took 2.5 mg (one little pill) once a week for the first few weeks and then very slowly increased in the hope that my body would build tolerance. It seemed to work and I never had any side effects (other than slight hair loss after I finally got the dose up to 25 mg per week).

My fear of vomiting came from the fact that my oesophagus has scarring and narrowing and my gastroenterologist had warned me to avoid vomiting! I avoid flu like the plague for the same reason. He's worried about my oesophagus rupturing (a life-threatening condition) so I was pretty nervous about starting mtx. Fortunately, it went well.

Thanks Kevin
I woke up heaps better this morning, no more vomiting and the flare is subsiding. It was so sweet of you to reply to me, Kevin. Your kind thoughts really make a difference.
Felicity

Hi Louise
Great that you are starting to tolerate the SSZ but the big question is, have you noticed any improvements in your joints?

I'll try the MTX again on Friday, and I guess this week I'll find out if the vomiting was a side effect or good ol' gastro.

Maxalon might be a good idea (for both of us) but heck with all the pills I am taking they will be hearing me rattle when I walk soon.
Hope you survived the torrential rains...
Love Felicity