Saturday, August 28, 2010

Wegener's Update

It occured to me recently that after all I wrote about my Wegener's Granulomatosis last April, I haven't said a thing about it since.  Usually I don't like to bore people with my aches and pains and whatnot, but since you all were so wonderful sitting through my whining that month, I thought I'd let you know what's been going on since.

I have found a local rheumatologist who is awesome and is working with my Boston doctor well.  My first local rheumatologist was a strange chick indeed and didn't play well with others.

I have been trying for months to get off of prednisone with no success.  Everytime I'd get down to a low dose, the arthritisy pains, especially in my hands and wrists, would come back.  Then I went on vacation to Prince Edward Island and ran out of meds.  I don't know if it was the relaxation or what but I didn't hurt.  So I just kept not taking the prednisone.  Now, about five weeks later, I have some morning stiffness, especially in the wrists and elbows, but generally I'm feeling pretty good.  Naprosen seems to take care of the occasional little flair.  I've also stopped doing my inhalers and, knock on wood, I can still breathe okay.  My new rheumatologist has suggested that I can try to go without the singulair and see how I feel.  That would be another pill down.

I recently went to Boston to see my doctor down there and as long as I'm still feeling okay come December, I can start tapering off the methotrexate too.  Yay!  That one is what keeps the immune system from attacking me but it also causes me to get some really lovely infections.  Or rather it stops my body from fighting off infections, so I get everything going.

So all in all things are going well.  I hope now that I'm off prednisone I can lose some weight.  My ultimate goal is to get to a point where I've only got to take a multivitamin, some vitamin D and maybe my antidepressant.  That's the one pill I don't think I'll ever be rid of.  Or at least I don't want to.  Every time I've tried over the years has been a very bad scene so in the interest of my sanity and that of those who have to live with me, I'll continue on that.

So that's my update.  For the moment, the Wegener's is being kept at bay.  If all goes well when I taper off the methotrexate, we may be looking at the R word (remission), but I don't like to say it too loud yet, just in case.  Don't want to jinx anything.  I know I'll have some bad days, but hopefully they will be few and far between. 


  1. {{hugs}} Lisa, good luck with the medication.

    & I just wanted to say, your banner is super cute :)

  2. This is fantastic Lisa! I am so pleased to read this and know that things are going well for you. I won't jinx it either but the R-word would be incredible! :-)

  3. Lisa, I'm glad things are going well for you. Isn't getting taken off meds wonderful? I'll pray that things continue to go well for you. :)

  4. Hang in there. Hoping for the best!


Note: Only a member of this blog may post a comment.