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

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Kailynn
New Member


Date Joined Dec 2007
Total Posts : 4
   Posted 12/14/2007 2:25 PM (GMT -7)   
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

leeloo67
Regular Member


Date Joined Aug 2006
Total Posts : 81
   Posted 12/14/2007 7:17 PM (GMT -7)   
My doctor let me choose from Enbrel, Humira and Remicade and I picked Enbrel for various reasons. It is luckily working great for me though... but I have unconfirmed rehumatoid arthritis and I am not familiar with your diagnosis. I'm no expert at all but my doctor said that these three medications were "pretty much the same".

Be glad you have doctor(s) looking at you right now. I'm 35 now and was just diagnosed about two years ago, but my symptoms started around age 18 and I went undiagnosed for decades - and, long painful story, but much of that time I look back on now as lost, big time.

What are your main symptoms?
Arthritis (poss. RA) - Doc scripts: Enbrel, Methotrexate, Celebrex, Folic acid.  Self-scripts: Glucosamine, GNC Men's Sport multi-vitamin.


Kailynn
New Member


Date Joined Dec 2007
Total Posts : 4
   Posted 12/15/2007 9:36 AM (GMT -7)   
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  

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 12/16/2007 9:26 AM (GMT -7)   
Hi and Wecome to Healing Well, I am using Remicade for my Crohn's but it does not work for my osteoarthritis. I have to see my Rheumy doctor again. What ever you decide I hope it works for you.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/17/2007 7:10 AM (GMT -7)   
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
Arthritis Forum Moderator & Co-Pilot
Active Severe Rheumatory Arthritis. AS. Crohns Disease. A.Chiari Malformation. MVP & Tricuspid Valve Prolapse. Kidney Stones (oh joy). 
Meds: Remicade 600mg Q3weeks; Intra-articular knee injections; 6MP; Mesalamine; Prednisone; Entocort; Meclizine; Azithromycin; Tigan; Reglan; LidoDerm; Diazepam; Diclofenac; Dilaudid; OxyContin. 


Kailynn
New Member


Date Joined Dec 2007
Total Posts : 4
   Posted 12/17/2007 8:13 AM (GMT -7)   
Thanks so much for your advice!

Do you think that wherever there is less muscle mass is the best place give the shot? I only say that because from the waist down I am pretty fit, but let's just say I dont have that flat and fit tummy just yet....should I switch to the abdomen even if I plan on using the humira pen?

k

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/19/2007 9:30 AM (GMT -7)   
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
Arthritis Forum Moderator & Co-Pilot
Active Severe Rheumatory Arthritis. AS. Crohns Disease. A.Chiari Malformation. MVP & Tricuspid Valve Prolapse. Kidney Stones (oh joy). 
Meds: Remicade 600mg Q3weeks; Intra-articular knee injections; 6MP; Mesalamine; Prednisone; Entocort; Meclizine; Azithromycin; Tigan; Reglan; LidoDerm; Diazepam; Diclofenac; Dilaudid; OxyContin. 


leeloo67
Regular Member


Date Joined Aug 2006
Total Posts : 81
   Posted 12/20/2007 10:49 AM (GMT -7)   
I've heard of injection site reactions with the injectible medications, but the Enbrel doesn't bother me at all. I do it about 30 minutes after taking the "pen" out of the fridge but I swear I can feel cold liquid going in. After that there might be a drop of blood but usually after a few hours I can't even see the injection hole.

I move my injections around. I've only been on it a few weeks but I've done it three times in the abdomen and once in the thigh. The thigh injection bothered me the most but it was only a mental thing as I just pictured the needle hitting my leg bone or something!
Arthritis (poss. RA) - Doc scripts: Enbrel, Methotrexate, Celebrex, Folic acid.  Self-scripts: Glucosamine, GNC Men's Sport multi-vitamin.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/20/2007 8:25 PM (GMT -7)   
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
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Kailynn
New Member


Date Joined Dec 2007
Total Posts : 4
   Posted 12/20/2007 10:24 PM (GMT -7)   
He's actually never mentioned prednisone...what's the form of the medicine? Shot, Pen, Pill, Infusion? I also just found out that my thyroid levels were WAY high....so now I'm even more uneasy moving on to a different treatment....is there any chance that the enbrel or the methotrexate could have been interfering with my thyroid levels or vice versa?

k

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/21/2007 4:00 PM (GMT -7)   
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
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 12/31/2007 11:23 AM (GMT -7)   

I started on humira and then switched to enbrel.  I didn't notice any difference at all in the two injections?  For me, both were relatively minor annoyances anyway.

 

Best of luck,

el


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


runnin' ragged
New Member


Date Joined Jan 2008
Total Posts : 2
   Posted 1/14/2008 2:08 AM (GMT -7)   
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
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