Buy Prints

I'm now accepting all forms of payments for prints.
Check out the online Store!

Friday, March 30, 2012

A tough pill to swallow

This is a pretty long post... bear with me.  Or just skip it.  You won't hurt my feelings.  :-)

Some of you may know that I've been dealing with some lower back pain... Well, I'm finally convinced that I have a firm diagnosis so here's what's been going on with that:

For years now (5 or more) I've had pain in my right hip/lower back.  There doesn't seem to be anything that I do to make it hurt, it just comes on spontaneously in "flare-ups" and when I have an episode, I'll get sharp pain in my right hip for about 2-3 days.  When I'm having this pain, I can't fully straighten up when standing and if I put weight on my right leg, the leg will collapse out from under me.  At first, when I started getting these flare-ups (years ago), they were very infrequent, maybe 2 flare-ups in a year.  But recently they have gotten progressively worse and now I am up to about 3-4 per month.  This means I'm spending about 2-3 days each week laid up in bed with intense pain.  Or rather I WISH I was laid up in bed, but since I'm a SAHM of two very young kids, it's more like I power through the pain with great difficulty.

Since it had clearly become an untenable situation, I finally decided I had better figure out what was going on and if there was anything that could be done to help.  (Ok, I have to give credit where it is due. It was actually Brian who made me do it.  I was going to keep ignoring it and hoping it resolved itself on its own.  Also I wasn't entirely convinced that there was anything that could be done that wouldn't leave me completely incapacitated for a period of time, such as I would be if I had to recover from a back surgery, for instance.  So thanks, honey, for saving me from unspeakable tragedy... this will make sense to everyone else a few paragraphs down.)  So I saw my general practitioner, was referred to an orthopedic surgeon, had x-rays and an MRI done, which revealed 2 herniated disks, an annular fissure, canal stenosis, and inflammatory arthritis in the right sacroiliac joint.  Of all that, the arthritis was apparently the most concerning thing, and was the suspected culprit for the pain.  I was referred to a physiatrist and a rheumatologist.

The physiatrist suggested a steroid injection into the right sacroiliac joint as a means of providing temporary relief until the doctors could determine the exact type of arthritis and get me established on a more targeted treatment plan.  I had that injection performed a week and a half ago and I do suspect that it is helping (I'm not entirely sure yet because I haven't had a flare up since it kicked in, but the fact that I have gone this long pain-free I am taking as a good sign).  The injection can be therapeutic for up to several months, maybe even a year depending on how my body responds to it.

The rheumatologist ordered a bunch of blood work, apparently to rule out certain types of arthritis.  The two most common types of arthritis (rheumatoid arthritis and osteoarthritis) were ruled out, which really only left one plausible option given my profile and symptoms: He diagnosed me with psoriatic arthritis.  I saw another rheumatologist for a second opinion, and she confirmed the diagnosis.

Which means I also have the skin disease psoriasis.

That's right folks, two autoimmune disorders for the price of one.

This was not a diagnosis I was expecting.  I was completely shocked and honestly it scared me.  Basically, in my future I have embarrassing and/or painful skin lesions to look forward to (because psoriasis is chronic and progressive, meaning it only gets worse as you age) and while we're at it, how about some spinal bone deformations, making it possible that I'll end up in a wheelchair (since psoriatic arthritis is a type of artritis that is much more likely to cause deformity).

Ok now wait... everyone calm down and take a deep breath.  It's going to be ok.

Or this is what my doctors told me anyway.  If I was untreated, yes, this is what my prognosis would be: that poor wheelchair-bound girl with the gross rash.  BUT (big but) these are conditions that both respond very well to aggressive treatment.  And the sooner you start the treatment, the better.  (Remember how I said Brian saved me from unspeakable tragedy by making me see a doctor?  There you go.  My hero.  :-D)

Ok so what is this aggressive treatment, you ask.  Well, it's not great.  But it's doable.  That's really the best that can be said for it.  :-/

I will be on a combination of two immunosuppressants (which will weaken my immune system making me susceptible to disease and infection).  One of the immunosuppressants (Remicade, the TNF-alpha inhibitor infliximab) is given as an IV infusion.  I will have to go once a month and sit in their office for two hours (the IV fluid takes time to administer).  I'm still working out who will watch the girls while I'm doing this... I thought it could be my dad, since he has Fridays off, but they don't do IV infusions on Fridays.  (Of course they don't.  That would make things way to easy.)  The other immunosuppressant is methotrexate, which is actually a chemo drug used for certain cancer patients.  This is a serious drug, folks.  Commonly causes nausea (as you would expect with chemo) and mouth ulcers.   They will also have to monitor my liver enzymes while I'm on this drug, since it taxes the liver.  (So I also have to be careful of my alcohol consumption.)  And I was told (multiple times, by multiple doctors, in a very severe tone) that I CAN NOT get pregnant while I'm on methotrexate.  It is a drug that attacks rapidly dividing cells (such as a cancer... or a fetus).  At high doses it causes abortion, but on low doses (as I will be) it causes severe birth defects.

Ok so if the universe was not already telling me that I can not have any more children, now it's screaming it at me.  Very sternly, through the mouths of doctors.

The other not so great thing about this treatment plan: I will likely be on it (or something similar) for the rest of my life.  Both psoriasis and psoriatic arthritis are chronic.  So it is never going away.  And my rheumatologist has expressed to me that it would not be worth the risks (mainly the wheelchair part) to come off the drugs.  So.  Yeah...  Bummer.


That's all.

Cheers to those of you who actually made it through all of that and are still reading.  :-D


Steve Wortham said...

Hey cousin. Sorry to hear about all of this, but it is indeed very good you saw the doctor before you got worse.

I was diagnosed with Crohn's disease last year which is also an autoimmune disease. I've been on a few different drugs. But now I'm on Remicade, just as you will be. It has been the most effective thing for me. It does lower your immune system and increase various risks. In my case I got shingles just a few weeks after starting infusions. But it was a mild case (no big deal really) and I was all better in a couple weeks. And my Crohn's symptoms have been in remission for months afterwards as I've essentially felt "normal" for a change.

Your condition is obviously different, but supposedly Remicade is used for arthritis often (maybe more often than Crohn's and UC). So hopefully your results will be as good or better. I also tend to think that medicine for these autoimmune diseases are just going to get better, and more targeted with time. So while you and I will be on some kind of medication for the rest of our lives, surely the medicine will continue to improve in years to come.

Mommy Parr said...

I am so sorry to hear this but very thankful that you have an answer and a treatment plan. I wish we lived near you so I could watch your girls.

Let know if I can do anything from afar!