the real bionic woman

[Tiff]

Wow, just wow.  I'm humbled by the strength of the human spirit!  We really, really need to defeat this disease!

http://www.dailymail.co.uk/health/article-1025177/Meet-real-bionic-woman–mother-joints-replaced.html

[Maz]

Hi Tiff,

Thanks for sharing this article – she really is a woman of fortitude and inner strength.

I had read somewhere (purely going on vague memory here ;)) that joint replacements could be tricky for those of us with RA, because of increased risk of postoperative infection/complications. Sort of made me think, too, about Brown's assertion that RA presented like (I think the term he used was) “smoke-hoppers,” where inflammation would present in one joint and then hop to the attack the next joint. Made me wonder if this woman's RA (mycoplasmal infection) just hopped to other joints as she had others replaced?

Would be kind of interesting to know how others with RA fare in this kind of instance…if worsening is experienced in joints that were otherwise fairly stable before the replacement and how common this might be.

Peace, Maz

[Michele]

Hi Tiff,

You said it! We need to defeat this disease!!! This woman's story is amazing in her fortitude and frightening in what it portends for people with this disease. I wonder if she still has arthritic pain in the replaced joints? Or if it just attacks the remaining joints.

Michele

[Tiff]

Yeah, I have lots of questions about how this happens.  How can this lady have the same disease as I do, and say someone very different from us like John McDonald?  I just can't wrap my brain around the lack of curiosity as to how the “same disease” can be so different.

Maz, you mentioned “smoke hoppers” and that very much describes my experience.  It is as if the infection has hopped from joint to joint.  But in my case, and perhaps only because I was on ABX the entire time, the HUGE inflammatory response my body mounted (we call it palindromic RA, but it really amounts to a small nuclear war!) has caused it to be contained to where the deterioration has been avoided, at least for a while.

I have also wondered how people do after a replacement.  Does the joint still hurt?  What happens next?  I guess I COULD have done research to find this out.  I am not incapable of that, but I really don't do that kind of research because it scares me too much.  I found this article on the mainstream news or I wouldn't have seen it.  This disease makes me stick my head in the sand in a way that nothing ever has.  It just frightens me too much to look at too closely at times!

[whaleharbor]

Well, I haven't had a joint replacement…thank God.

But I was on 20mg (twenty) of Doxy every day for a year and doing really well until I injured my knee (freak high-heal on a freshly, overly, waxed floor debacle…and they were such cute shoes too…drat…).  My injury consisted of a torn ligament, torn meniscus, and loose piece of cartiledge in the joint (Oh my)…my labs got worse after my “minor” arthroscopy.

I can't help but wonder if I got worse because of the trauma of the surgery itself.

I would think that any trauma that someone undergoes with an autoimmune disease would not be good at all.  I too wonder if just has lead to other more severe issues.

— whaleharbor

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[Tiff]

I think your right, Whale!  I had a relative years ago (not blood relative) that had CREST.  She broke her hip and then got in a terrible car accident not long after getting over that.  She broke both knees!  She just could not recover, and we lost her fairly soon after all of that.  She was in her 70s BTW.  I think trauma (mental or physical) really adds problems.

At the time, I had absolutely no idea what she was up against with CREST – the family member that told me about it made it sound like such a minor disease!  Can you imagine?  That just confirms my feelings that people are clueless about these diseases.  I sure was!  This news story might wake a few people up to how serious “arthritis” really is!!!

[awesomemb]

:dude: My scleroderma deteriorated my joints in toes and fingers. I have eight artificial knuckles in my hands and it has been wonderful. No more terrible pain when I try to do something. My fingers were so dislocated I would bump the bones that stuck out. I have had SD for 22 + so my body has taken a beating over the years. So much more information and meds are out there now. If anyone does need hand surgery in the future I recommend going to a person who has done many surgeries on SD patients and understands the circulation issues and other possible complications. I went to Dr. M in NY.
Best regards to all, MB

[Doc's name reduced to initial per RBF policy]

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