Tuesday, July 21, 2009


That's what I've decided I have.

"itis" denotes inflammation as opposed to "osis"which implies pathology that is chronic or degenerative but without inflammation.

Sorry this post is seriously dated. I was too symptomatic to think about it let alone post about it at the time. And then I took off for a few weeks on a road trip.

Since my RE-diagnosis of Sjogrens CNS Vasculitis (see...another itis) and Mixed Connective Tissue Disease, (isn't this all the same?) I have been sent to a different specialist for every part of my physical body. My shrink hasn't seen me yet, but I'm waaaaay overdue. I have been getting a crash course in autoimmunity. I thought I knew what I could expect when I only had MS and actually got to a place where I was alright with that. I think I managed to integrate a life for myself that didn't always revolve around the disease.

Did you know that there are over 100 different autoimmune diseases? I knew about Rheumatoid Arthritis, Lupus, Scleroderma and Multiple Sclerosis, but there are tons more. I read somewhere (sorry can't find the source) that the four most common autoimmune diseases are more prevalent than cases of cancer and cardiovascular disease combined, yet only receive a fraction of the budget for research from NIH.

Before, I had a picture in my mind of rouge white cells munching on my myelin. As varied and unpredictable as the outcomes of those munched wires were, I still thought I pretty much knew what I could expect.

All of the standard MS disease modifying agents had been of no use. I continued to have new lesions and had the added benefit of all the nasty side effects. Having been off all shots for some time now, I had resigned myself to just treating symptoms on an as needed basis, while keeping a look out for any new promising treatments should I be in the mood to be a Guinea pig again.

Now I have an image in my head of thousands of white cells that somehow resemble a cross between Don Quixote and Mr.Magoo on crack. Blind, and crazy, they are mistaking windmills for dragons, friend for foe, good cells for bad. Not happy with their steady diet of myelin, my Magoos are raising hell with my joints, stomach, esophagus, and skin, hence the "itises".

So, I have been under the care of Dr.Chicken Little. (the brilliant doctor who has no internal censor. Whatever he's thinking comes directly out of his mouth without delay. It was unnerving at first because I always get to know what the worst case scenario might be. It's also humorous when he looks at your chart and declares 'your getting fat' or 'old', and I get to reply in kind.

He started me on weekly Methatrexate injections. And I thought interferon's were hell...
I have a new found empathy for those undergoing full strength chemo treatments. Even with leucovorin (folinic acid) to counteract the side effects I was miserable. Ask anyone who had to be in my presence. I ached, hurt, threw up, developed new infections, moaned, groaned, bitched, and cried.

What a wimp! I know people who take this drug regularly and deal with it . But then I know people who happily took their interferon shots too. My tolerance for such poisons are obviously below the norm. It's kinda funny when I think of all the 'poisons' that I happily endured recreationally at one time in my life.....long long ago. But, there was nothing funny about this and after 3 months Dr.C.L. gave me a reprieve.

Since MTX is not something I ever want to repeat, it was suggested that I look into (he knows I take nothing without researching it first) trying Arava. Leflunomide.

During this time Bubbie's Hubby was planning his well deserved vacation, and looking forward to getting away. The idea of driving for miles and being overjoyed to be here or there taking snapshots and making memories made me want to puke some more. Luckily the ill effects started wearing off and totally dissipated by the time we left our first stopover on our trip.

We had a great time... check out pictures in next post. I feel great! WTH! I drove some. Hiked some. (yes! hiked!) Walked a lot. and the kicker.....WITHOUT A CANE!

I'm still taking meds for the various itises. Plaquenel for the major one., but I haven't taken a pain pill in over 3 weeks. Knock wood. Throw salt. Do something.

I have no idea what to attribute this miraculous change up. It could be the ups and downs of flares associated with autoimmune diseases, it could be that the MTX knocked the shit out of those errant T cells or it could be that I need to get away more often.

What do you think?

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Jen said...

Ahhhh.....Found the new post. Wasn't up at FB yet.

Autoimmune hell is insane. I don't much understand it, and the more I go the less I know!

So here's my thought: D'oh!

Bubbie said...

I know what you mean. I'm thinking the docs are in a similar boat. Doh!

Anne said...

I just read the link you provided for the Arava and the contraindications, blood work, side effects and possible NEW diseases is just plain SCARY!

I know methotrexate is a tough course, which is why I opted to go the prednisone route (now on Decadron once a week, down from 10mg maintenance Prednisone per DAY). I am doing so much better. My friend MK took it for over 10 years for RA and she gets Enbrel injections once a week now. She was so sick on the methotrexate pills and wouldn't wish it on anyone.

I know I mentioned it to you before, but have you considered LDN (low dose naltexone)? It doesn't get used much for Sjogren's, but is used mostly for autoimmune diseases in general.

I was told about it from Crazy Chick (Chris) who takes it daily and you might want to talk to her. She is an encyclopedia when it comes to LDN. She lives in Arizona where the weather is so hot and she says LDN helps her MS and other things too.

I was considering it for me when I had a Crohn's and MS flare at the same time last year. I was sooooo sick and willing to consider anything!

After getting well on a month of IVSM and antibiotics, I discarded the information because I had something that worked. But LDN has their own forum and maybe reading up on that might give you something to compare Arava with.

Hmm, Print out the Arava info and read it over, and then do it again and again. Why? Because at first glance, it looks like a magic bullet, but down the road, the diseases you can get from taking it (esp when not under close supervision) I think would far outweigh taking the drug.

I'm glad to see you posting again. And thanks - I'm soooo addicted to the new games on Facebook. Like you, I do not need any more addictions either.

Glad your road trip was health-full.

Take care,

Bubbie said...

I've looked into LDN before. I could get it, but none of my doctors would approve and continue treating me. I'd be on my own. I hadn't seen it used for combo AI's.
And yes, I agree, the Arava has some seriously scary potentials.
I feel good now, so I'm not looking for trouble.
It was explained to me that it's a careful balancing act with all of these treatments. The thought of developing a non hodgkins lymphoma is sobering.

Mike said...

I wanted to comment on this. Actually I have been doing a lot of commenting the last few days to avoid posting something new over at my blog. *le sigh*

I recently did a research paper for my English Comp I class. In the event you are curious I did it on MS and the effects of cognitive degradation and fatigue on the college student, namely moi.

While looking up data for who gets this humdinger of a disease I came across one, and I hesitate to use this word, interesting factoid. Women are 2-3 times more likely to contract an autoimmune disease than a man is. I did not look any further into that statement but I assume that since it is on the NMSS site there has to be some validity to it.

With that being said I wonder if any research is being done to address the specific (and I am so going to spell this wrong) physiological differences that would cause the increased rates of disease in women versus men. And then is that information being used to look at possible treatment options.

I know what the likely answer is but I just thought I would add my two pennies for ya'll to consider.

Ok, I'm off to find another blog to comment on so I can continue to ignore mine.


Have Myelin? said...

Wow. I am blown away. I'm happy for you.

My mom has RA/Lupus and has taken MTX. She too did not like it. I am astonished at how different her hair is!

Arava! I like it.

Denver Refashionista said...

I'm glad you are feeling better for whatever reason. I'm currently in autoimmune hell.