Thursday, March 11, 2010

When Life Throws You a Curve Ball.

I spent last night having a personal pity party.  We have been watching my liver enzyme levels for the past several months.  A normal reading is AST 5-40 and ALT 7-56.  Mine have been fluctuating between 56 and 122 for both.  At my appointment in February, my doc and I agreed that we would lower my MTX slightly and see if that did the trick.  Evidently- it did not as my results are back from last week's blood tests (I love my doc's three day turn around time) and my numbers are at 205 and 174.  Never, ever let it be said that when I do something I don't do it with gusto.  :-s

Though I should have seen it coming- I was very hopeful that by lowering my MTX- we would head things off.  I do not want to give up my Methotrexate.  I have said that a thousand times- to my doc, to family members, to myself.   I know that everyone has different reactions to meds- but for me Methotrexate has been my savior.  Over the last two years I have gotten to the point that I feel better than I did before my diagnosis.  I started on the feeling better path right after we put me on MTX and just got better and better as we upped my dose.  It was only after I had been on it almost a year that we added Enbrel to the mix.  When I started having my liver issues I offered to go off every other drug in my regimen if it meant keeping the MTX.  That didn't fly with my doc. 

So now- I am headed to a Gastroenterologist.  My doc actually scheduled my consult with the GI doc for next week.  I have been pretty much guaranteed that she will pull me off my MTX immediately.  That scares me because pre-mtx I was just about at the point of needing a cane.  I don't want to go back there.  I don't want to go back to taking hours to be able to get dressed in the morning.  I don't want to go back to having to time walking the dogs so that the pain is not too bad yet.  And there I go whining again. 
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In the hour and a half or so since I began this post, I found out that one of my online friends lost her 1 year old daughter last night.  It rather makes my whining above seem pretty foolish.  My heart just breaks for her.  It puts things in perspective very quickly. 

For me that means that I am going to spend the next week- while I wait for my doctor's appointment- giving thanks for every single thing- big and small- in my life.  I am going to hold my loved ones closer.  I am going to take things in stride because really- the alternative is a choice I don't want to take. 

4 comments:

MissDazey said...

I'm so sorry about your friend losing her daughter. Can't imagine going through that. (Although I've gone through it with friends)

Not sure I understand why they are sending you to a GI doctor. I have always liked your action plans..one part whining, 3 parts positive actions.(I whined a bit on my blog this morning, needed to clear my mind) BTW, walking with cane isn't a bad thing, neither is my wheelchair or walker when needed. Being in pain is a very bad thing.

Do you think the Enbrel will help without the MTX?

Jules said...

Thank you MissDazey.

They are sending me to a GI because it is easier to find a GI who is well versed in dealing with this issue than it is to find a Heptologist period (unless I want to go to the med school- and I would rather not be a lab specimin at this point- I have done that and it wasn't pleasant-lol). This particular gastro works with my Rheumy fairly often for all sorts of stuff.

I know in my heart that walking with a cane is not bad- nor are walkers or wheelchairs when needed. My sticking point is that when I think of getting to that point I hear my first Rheumy saying to me "If we don't treat you agressively, you will be in a wheelchair by the time you are 45". I haven't made it to 43 yet- and the thought of that coming true even with treatment scares me to the marrow.

Thank you so much for your comment on my action plan. It's time for the whining part to stop and to figure out what my positive actions will be. I just want you to know that you are an inspiration.

G. Out said...

It's important with all therapies to trust your body. If anything pushes you beyond the limits of your pain threshold, stop therapy immediately, or ask the practitioner to lighten up. Make sure to do your research. You don't want to go to a massage therapist who specializes in sports massage to manage your arthritis pain. There are many business reviews online, see if you can find some testimonials about the therapist you're considering. If at any point a therapist in any modality behaves in a non-ethical way, leave the session and find another therapist.

rheumablog said...

I'm sorry you're probably going to have to stop taking MTX, since it works so well for you, Jules. But you REALLY NEED a healthy liver.

I was one of those whose body just couldn't tolerate MTX. Sick as a dog, I was. My rheumatologist switched me to Arava, and so far, so good. Maybe trying that, with the Embrel, will work for you? There are so many different RA drugs out there. Don't give up hope, yet.

I keep a cane in my closet, just in case, even though I haven't needed it for many years. I know I'll be frustrated if a time comes again when I DO need it, but really, it's just a tool that can help me do the things I wouldn't be able to without it. A valuable tool.

Hang in there. Don't let this get you down too much -- there's always a silver lining. In this case, the silver lining may just be the opportunity to avoid deadly liver failure, and that's a very good thing. ;o)

I'm sorry to hear about your friend's baby. What a terrible, tragic thing for her. And yes, it does put RA into perspective. Thinking of you ...

-Wren