Thursday, October 29, 2009

N=1: Is this my fault?

I'm writing this from the Remicade chair, 4 weeks after my last dose. As many of you know, the ideal timing is 8 weeks between doses - and generally I feel great after my infusions. But this last dose didn't "take". My ankle and toe are in constant pain, my elbows and hips are sore, and I'm very, very fatigued.

I'm desperately hoping this isn't the first sign of a downward trend. If my honeymoon with Remicade is over, then in a few months I'll be back to the drawing board... again. The fab rheumatologist is even talking methotrexate again - God forbid. I hate that stuff.

When you have a chronic illness, and you feel bad... wait, scratch that, I'm generalizing.

I have a chronic illness, and when I feel bad, I blame myself for my illness. Everyone has some crazy, and this is clearly my crazy talking. I know I can't control my illness. Yet, somehow, those taunting, bitter voices in my head take over and point the finger: at my diet, at my rate of exercise, at that night (ok, nights) in England 20 years ago when I drank way too much, at my lack of blogging. (Because, after all, blogging does prevent psoriatic arthritis). Ha.

I have this elusive feeling that if I could just do ________ (fill in the blank, crazy voices) I would feel better. I just wish I could figure out what _______ is.

So, I'm going to start back on the autoimmune diet, in a week, once this Remicade does has or hasn't kicked in for sure. I'm reading Pagano's book "Healing Psoriasis". I don't know if it will work. But it is something active I can do, instead of being a passive participant on this ride.

I'm falling asleep now (Remicade does that to me), but tomorrow I'll post this great article I just found about how diet can affect autoimmune illnesses. Sleep is good for me too, right?


  1. Sorry you're feeling so bad so soon after your treatment. I can honestly say I know how you feel.

    I know you have done lots of research, but I can't remember if you've ever posted anything on any correlation between PsA and aspartame? One of the guys I work with said he used to be in constant pain from regular arthritis and once he quit drinking diet drinks, he felt alot better.

    Hope you get to feeling better real soon.


  2. I've been there. I was on Remicade for a few months, and it eventually stopped working for me. I really, really hope that isn't the case for you; it's hard going back to the drawing board every few months, trying to figure out some combination of drugs that will help more than they hurt. You'll get there; I'll get there.

    Thanks for posting everything. Sometimes, it's like reading my own diary. Spooky.

  3. Thanks for the kind thoughts! The Remicade is working now... whew! But I have no faith that it will have any staying power.

  4. Just discovered your blog and felt so relieved knowing that I'm not alone in the PSA struggle. I took Remicade for about 6 months before it started to wear off. By the end, it only lasted about 2 weeks. I started Enbrel and have been on it for about 5 years now, but it's starting to lose it's effectiveness too. These days, I'm looking to diet more than ever as I'm growing increasingly convinced that prescription Rxs are never going to provide a lasting fix.

  5. Hey P. E-K... such a bummer about the Remicade for you, but I have to tell you I'm inspired that you were on Embrel for 5 years. That sounds like heaven to me. But hell too - do we have to drug ourselves for the rest of our lives?

  6. Just wanted to pass on some info to you in the hope that it may help--I too have Rheumatoid and after a ghastly episode on Methotrexate i started using a herb called Cat's Claw---it has made a huge difference---treats the inflammation. Bach Flower White Chestnut is REALLY good for those horrible thoughts that just waon't go away. I find that thoise horrible thoughts are a real sign for me that i have eaten something that I'm reacting to eg---food colourings, presarvatives, SUGAR and fructose are both BIG contributors. i now eat veggies as fruit, no sugar or fruit, no jam, honey etc and have sadly had to give up coffee . BUT--all this put me into remission much to the Rheumatologists amazement. Recently I decided to see how much of those foods i could tolerate and I lasted 3 weeks before a nasty flare up which is now subsiding. Hope you may get some help and relief from this approach even tho the medical profession think it's rubbish.