Re: Venting I think/Caroline (oops long)

[Guest guest]

Hi Caroline.

Going to attempt to answer all your questions.... I still have my blood work done every month for the MTX. My CBC is still high, over 15,000. My CRP has always been normal, but my SED Rate is still up there, last one was 30 and that was last month. I have only had four shots of the Humira. They say that it can take up to four months, like the MTX to fully kick in. Before and after the cortizone injections. I was doing pretty good, for the most part. I would say pain level was about a 5 before my next Humira injection. I had to get the cortizone injections on the 24th March, happy birthday to me lol... My left Ankle seems to be the worst off, that one hurt really really bad during and after the cortizone. My knees weren't to inflamed at that time so he didn't really worry about them, thank goodness. I did so so for a little over a month after the cortizone, but starting last week the pain is back, pain level 20. Still more in my ankles, tho my knees do still bother me. One thing I have noticed today, is that the pain in my left ankle (guessing here) is kind of radiating up the shin bone?? At least I hope it is just radiating pain. I can handle the muscle pain, sort of lol.. as it isn't that bad. I kind of think that this was brought on by swelling, again, but also we had a pretty bad cold front come through last week, with Snow (told you to keep it lol). Part of me wonders if the pain in my left ankle is worse than anything else, as when I was in the 4th grade I tried to be wonderwoman (on a dare heheh) I broke that ankle. (I was young and dumb.. took a dare to jump out of a 2story window and we know how that went lol) My Rhumey here in the Springs is out of the office until next week, so I will stick with the pain until then. As his oncall Dr doesn't know anything about Stills. I also go back to Denver on Tuesday to see the professor there for follow up on the Humira. One thing he has me do is keep a journal everyday. I chart fevers am and pm, all my different joint pain, headaches, fatigue.... Its actually a pretty good journal. I have been doing it since I started seeing him last year. And we go through it step by step whenever we see each other. I am doing the Humira injections every other week. Mom wants me to increase my pred for a couple of days, as that kind of helped after they did the cortizone the first time, but I dont want to (sound like a baby yet lol)

Wow I didn't mean for this to be this long, sorry.

I wish you the best of luck with your test results and remember we love you and I think about you often. Thank you for all your help with this.

Love and Hugs

Kelley in Colorado

[Guest guest]

Hey Kelley,

I got to agree with you on the broken bone thing. I did a crash on

the east Spanish Peaks a few years ago and broke my right leg big

time. Nothing as brave and daring as taking a leap out of the

second story window though. Ended up with a leg broke in half that

took going through three different casts to get healed up, around

six weeks in each cast.

Anyway that is my weather leg. It is very good at predicting crappy

weather. It is backed up by my weather knee that is on the other

leg. All of that was before being diagnosed with this Stills

stuff, but I think is amplified now by the Stills stuff. (boy

ain't I being nice today)

I know this guy out in California that puts the double whammies on

things like Avalanches when there is Sharks around. Both that guy

and sharks are particular nasty kinds of people. He has been known

to bribe referees. Enough said.

I saw you at the bonfire party for just a little bit. That was

right before that big Mother Ship came flying over. I was thinking

that you might have been one of the folks that was beamed up by that

big bright light coming out of the bottom of the mother ship. I

almost got tricked into being abducted also. Those lights looked

kinda like all that lights and effects that Garth had at his

concert I went to a few years ago. I do think though that Tricia

was abducted.

Dan

[Guest guest]

Hello and fellow Humira takers,

I am on Humira and meth and Arava and Arthrotec(I always forget to take it). I

take Humira twice a week with 25mgs of meth and 20mgs of arava.

I have a tendency to be bad with the consistency of taking my meds. I did

however notice a difference in upping the Humira, but, I have to follow it with

the Meth. I think it is a great combo. It took about a month for me to notice

a difference when I first started taking the Humira. When I upped the Humira

dose I noticed a difference right away. I mean, we're injecting it into

ourselves. It's strange but the day after I take my Humira I get alittle more

swelling before I get relief. Does anyone else feel this?

Sometimes I think of this disease as separate from myself. As if I can feel it

attacking me. The doctors told my parents it could burn itself out. Well, 14

years later it still kicks my a#@.

I know people are sometimes worried about upping drugs but I swear I take

everything but the kitchen sink. I'm feeling bad go into the bathroom, take

alittle this, alittle that, inject some stuff, and come out walking. I think

it's because I started so young. I swear I could be a pharmacist(lol).

Be Well.

Love,

, JRA superstar

[Guest guest]

Hi . I notice, sometimes, that I feel more swelling in my legs the day after my Humira shot. But it is my legs that are bothering me currently with this flare.

I go back to Denver tomorrow morning for a check up and then my Rhuemy here on Wednesday. I will let you know if I find out anything different.

Love and hugs to all

Kelley in Colorado

[Guest guest]

Hi Caroline

I just located my lab results

my WBC is always high and everything else is normal until you get to the differentials

my NEUT#'s, LYMPH#'s, MONO#'s are always high

and my NEUT%'s are always high

Sorry it has taken so long to get back to you.

As far as the cortisone shots.. I dont know how long they are supposed to last. I know I didn't over do anything, as my ankles hurt so bad from the injections for two weeks lol.. I called into my Rhuemy last week but they couldn't get me in until this wednesday, so I will see what he wants to do then. I see the Dr in Denver tomorrow morning. Wooohooo so many dr's in one week lol.. This is also my shot week on the Humira. I am also going to talk to the Rhuemy, again, about the vicoden not helping me (this will be the third time) . Lord knows I dont want to get addicted to anything, but I cant handle the pain and the not sleeping anymore.

You made me laugh when you said you hoped I wasn't the puzzle you are. My dr's certainly think I am a puzzle LOL

I am off to la la land I hope... Will touch base again after my appointments

Love you all

Kelley in Colorado