Im only 18, I have arthritis, and I need help!

Hey everyone, I just found ya'lls forum when I was looking for some information on Humira.

A little info first...

I was misdiagnosed with JRA when I was 9, and was recently rediagnosed with psoriatic arthritis about 2 years ago. I only began treatment over this past summer with the combination of enbrel and methotrexate. Unfortunatley, my rheumatologist (I actually have to see someone in pediatrics because of my age) thinks it's time for me to move on to a new treatment. Because the enbrel was ineffective, my options are either Humira or Remicade. I'm a freshman in college, so the amount of classtime I would have to give up to go to another city to see my doctor makes Remicade practically impossible. So the obvious answer seems to be Humira, right? I mean, I've never had any reactions to the enbrel and methotrexate, but my doctor was very certain of the fact that Humira would be very painful, and that it makes the enbrel shots, which I struggled with at first, seem like a cakewalk. Having a very low pain tolerance, this really concerns me. I just got used to taking the enbrel!

I just wanted to know if any of you who have tried these various treatments had any advice? I'm also really nervous about giving myself the shots anywhere but in my thigh...I know I'm supposed to keep rotating them, but I'm really afraid to!

I'm really struggling to make a decision about my new course of treatment, any advice would be greatly appreciated!

k

At first, my symptoms were relativley concentrated in my elbows and wrists, but now it's flaring up in my hips and knees as well. I also just found out that my thyroid has about doubled in size over the last 2 months, which gives me worries about my immune system, but explains my recent weight gain. My doctor also recently had me take Xrays of my knees and an MRI of my right wrist, and I was so excited when they all came back normal, but my doctor said that because I can hyperextend almost every part of my body, there's a lot of room for the active disease to hide, and that we should assume that it's still there.

Do you have any thoughts about the different areas (thigh, stomach, arm) where you're supposed to take the shots? Are certain areas less painful?

k  

hi K!
hah...umh, yeah the Enbrel was a cakewalk! lemme' see....4 years ago i started Enbrel (the ones you mix yourself) and that was a BREEZE. then they gave me those pre-filled syringes and holy ****!!!!!!!!! those burn like a *****!!!!!!!!!! LOL.
nevertheless i swithched BACK to the old one.
Enbrel became ineffective after about 2 years then i went on to Humira 40mg twice a week.
honestly, the Humira (regular syringes, i never did the pen) was less of a STING than the prefilled Enbrels. yeah, it does have a bite...but, the slower i injected into the abdomen (the best place for me, rarely ever hurt) the better the med was. i was on HUmira for close to 2 years.
now i'm on Remicade.
i say, shoot for the Humira....if it's your initial gut instinct to do so...you might be right!
you can always move up to remicade in the future, but you can't always necessarily step back down the ladder.
hang in there!
erin

hmmmm...well here's the thing, you're actually not going deep. it's only "under the skin/to the 1st layer of "fatty" tissue" so even if you want to to the thigh...it's fine.
from MANY MANY years of self shooting, LOL...i just found that the abdomen hurt the least.
my tummy is super flat...yet, i'm not Muscles-Marge...so i can actually grab a hell-of-alot of flesh from the abdomen even though there's not much fat there.
you'll experiment...and that's good to do. everyone is a little different, so feel free to try a few places just to see which feels the most comfortable.
and BTW....you said you're 18...just wanted to let you know, i'm 26, and i was diagnosed at 17 w/ RA. NO ONE i knew or ever known ever had it. so you're not alone. just know that.
oh, and one more suggestion?....even though if you feel you might not need to...i would track down your college's Disability Counselor. i do think every college must have one. they work with any student who has say: arthritis, cancer, etc....whatever! do it just to cover your a**. should you need some days off, it can not be held against you.
they also write a letter to your professors explaining the case; if you need certain accomodations like frequent breaks those needs must be met.
that was the best thing i ever did when i was in college.
best wishes
erin

Kailynn,

 

With your inflammation, has your doctor ever thought about trying prednisone?  I know it works well for almost everybody and is great for RA or Psoriatic Arthritis.  I have a friend with PA and he swears by his prednisone use.  Just thought I'd throw that out to ya! 

 

Ginny

Hi K,

 

Prednisone is usually taken orally - pill form.  But in serious cases, that need a direct hit with an anti-infammatory, it is given by needle directly into the joint or affected area.  It's a cortisone shot. I've had very high doses of steroids given to me by I.V. as well.  So depending on the circumstance, you can get it in many ways. 

 

For daily use, it's in pill form.  There are side effects to prednisone that people don't like.  Weight gain, mood swings, etc, but when you get yourself onto a moderate or low dose (20mg or less), those side effects tend to go away.  I'm on 8.5mg a day, and I don't have any lingering side effects.  The stuff actually saved my life!

 

Yes.  Your thyroid can be affected by the methotrexate you're on.  That is a common lupus treatment too.  Any type of chemo medication will do "stuff" to your thyroid. So you have a hyperthyroid?  How does that make you feel? Probably not too great....

 

I'd talk to your rheumy about the possibilty of prednisone.  It's worth a shot, right?  He might have his reasons why you can't be on it, but at least you'd know what treatment you can't be on.  Prednisone is a fantastic medication for psoriatic arthritis - according to my friend! 

 

Merry Christmas!

Ginny

Hi K,  I'm brand new here and I've been looking through some of the threads and yours caught my eye.  18.... wow.  Well, I can tell you I'm on Humira right now, was on it for about 3 months and then off for a couple months while the insurance people figured out what they were gonna do and then back on it tonite, actually.  I opted not to do the pen shots because I was told those have more of a sting... you don't have the option of how fast or slow the medicine is injected.  So I use syringes...  but I hate 'em!  Erin, btw, you cracked me up with your description of the syringes!!!  Anyway, I don't inject the thighs, haven't tried it, I'm just scared to do that... not really sure why.  I have quite the 'roll' these days in my belly section so that's where I do it.  I find that if I take it out of the fridge about 10 minutes or so before, roll it around a bit to warm it up, and then just take it really slow and easy, it's not too bad.  I often times have redness for a few days around the site, and it's kinda itchy... but, it's do-able.  I don't know if this helps or not???  Also, I'm guessing your dr. doesn't want to put you on the prednisone because of your age and the side effects on bone density and all that?  My first dr. did that to me... I was 31 when I was diagnosed.  I'm now 35.  But man.. if you can stay on a low dose of prednisone, it's awesome stuff!!!  And painless!  :) 

ragged