Psoriatic Arthritis Journal - 2.5 year Update Page 63

[Lesliec1]

He also said that if you are on something like 4 mg, 3 mg or 2 mg, that you are really just tapering down and allowing your adrenals to get back on the program. You are not treating a disease with an anti-inflammatory.

Interesting. I have had the feeling that it isn't doing all that much for a while. And yet a Rheumy ORIGINALLY gave me an Rx for 3mg so that doesn't make sense if that GP you talked to is right. Frustrating 'cus docs can't seem to agree on the basics about prednisone and I have asked all kinds of things. They even disagree on when to take it- all at once or half AM and half PM. Ridiculous. I would think such a "routine" drug would be a little more standard by now. Good lord, they all give out this crap- even the vet!

edited to say: Maybe I should say MY DOCS can't agree on prednisone. Well, I live in Virginny after all. It's right next to Podunk.

[Lesliec1]

Yet another reason that I am glad to eat this way.

That's for sure. I swear I have an actual gag reflex every time I see "THE LIST" (Enbrel, Remicade, Humira, Etc.)

[nicoles]

You know, Leslie, I wondered if the guy I was talking to was right or giving me the right information because I personally know someone who uses 2-3mg predisone to help out with her lupus symptoms in cold weather, and it helps her, so I don't know.

Might be that he was thinking of that dosage in terms of tapering down from a much higher dose of say, 60 or 30 mg, so by the time you get down below 5mg it is not about treatment. But if you just add that small dose, it might make a difference, however slight.

Ugh. THE LIST. <shiver> Feel so lucky to have dodged that particular bullet so far.

[Lesliec1]

You know, Leslie, I wondered if the guy I was talking to was right or giving me the right information

I wonder if any doc I've ever talked to is right! Never found 2 that really agree on the details.

[nicoles]

You know, Leslie, I wondered if the guy I was talking to was right or giving me the right information

I wonder if any doc I've ever talked to is right! Never found 2 that really agree on the details.

So true! Me neither. So I make my own truths.

[moonwatcher]

So I make my own truths.

Those are the ones that really count.

xoxoxo

moonwatcher

[nicoles]

Thanks for the validation Moonwatcher!

Today I am working on a fun portrait of a couple who had hiked to the top of a mountain in Nepal together on a year-long trip around the world. I feel happy during and after working on this one!

[nicoles]

Very interesting post about living with autoimmune disease, posted by a friend on FB with MS.

And a quote from it I particularly felt a resonance with:

"My doctors’ assurance was that I would get well. I would be able to get a job with benefits that would allow me to pay for insurance. Biomedical treatment operates on a capitalist understanding of time. Rather than embracing the regenerative powers of the body, the idea is to get back to work as quickly as possible. It is the body’s radical autonomy that resists commodification. To spite our optimal productivity, it gets sick. Sickness can be masked and treated but the body responds nonetheless. It reacts. It may take longer to recover than is convenient to your boss. We do not have time to get you better. We have time to make you functional."

Edited to add:

I guess today is "Post Things On FB About Psoriasis, Psoriatic Arthritis and Autoimmune Diseases Day" Another friend posted this article on psoriasis and psoriatic arthritis. It is not as political, theoretical or personal as the post I linked to above, it is just a general overview with a slant towards medical research and treatment options, with little fear-mongering thrown in. But interesting nonetheless.

[moonwatcher]

hi nicoles,

Thanks for this. It's going to take me a while, off and on, but I am going to read her whole piece. Thank you very much!! I certainly agree with the quote you posted in oh, so many ways.

xo

moonwatcher

[nicoles]

Hiya Moonwatcher

Yes, it is long, and dense, and takes awhile to read. The author does not have MS, by the way, just my friend who posted the link, and who is treating himself with diet (yes!!). The author has Crohn's disease, Grave's disease and another AI disorder.

xoxo

Nicole

[nicoles]

Debbie, was that original diagnosis also the case, or was it just a mis-diagnosis of the psoriasis? I was diagnosed with eczema back when I was a baby, and that is what I thought I had until a few years ago. And the topical stuff they gave me never did a thing for it.

Well, me and my DH both got sick again this weekend, no surprise I guess. I was sick yesterday, and he is sick today. Fortunate that he has tomorrow off - he needs it! He has been working hard! (warning - language on link is not clean)

[moonwatcher]

Hi Nicoles!

First of all so sorry to hear you and DH were/are sick again. Goodness you guys have "got it all" right now! I am sending hugs and get well energy your way.

I have been meaning to say that I enjoyed reading about your working on the portrait for the couple who went to Nepal. That's a nice bright spot.

And also wanted to report in that I did complete "How to Be A Person in the Age of Autoimmunity." It WAS very interesting. It made me feel al bit cheated though. I felt like I was back in grad school, wafted about by brilliance, which somehow undid its own convictions by the end of the article. Humira wins the day. Like the academic Marxist who drives a Porche and can rationalize why. I never quite got the hang of that kind of thing. But I see it's still alive and well. Or, er, now has auto-immune issues. I know I'm being a smart ass, and I don't have her particular challenges, and I'm glad she's feeling better. But goodness, why go through all that truth, only to say and now I'm taking the talking humira injection (the sub text being that the diet and lifestyle changes were too much hard work) and can't wait to get back to work and be functional. So you can see this pushed MY buttons!!

I guess us lifestyle changing kind of folks are a new "uncyborg." Or something. But more power to us!!

Anyway, all good "food" for thought. And very glad your friend with MS is changing HIS diet.

xoxoxo

moonwatcher

[nicoles]

HA, Moonwatcher! I know what you mean about that post - "How to Be a Person in the Age of Autoimmunity" I was kind of like, "OK, Miss Person, you have the smarts, you have the AI cred, now where's your gumption?" which might not be nice, but there you are. I am not always nice.

I enjoyed the journey and the metaphors much more than the ending. Ah well. She is just another cyborg, after all. But to her credit, she did try raw. And it is quite true that there is no "time" allowed for true healing in our current working world, especially if there are "fixes" (Humira) to be had. This is exactly why I did not qualify for any disability - I did not try the meds. And now look where we are financially!

Yes, it was very enjoyable working on the nomads' Nepal portrait! And, fortunately, we are both no longer sick, it was just a momentary glitch. Understandable, since we are under stress.

xoxo

Nicole

[Lesliec1]

Oh wow. Now I have to read that piece too. Wow, Nicole, a person can't qualify for disability without doing meds first? Didn't know that. How freekin sad! I suppose that's the only way to prove a patient isn't faking?? Oy vey.

I can't believe you guys are sick again. What does that tell you about stress?

edited: oh good, just read you're not sick now!! yay.

[CathyB]

Glad to hear you are not sick anymore! Just caught up on your journal