Health insurance will not cover the clinical trial and so next up is;

-Gold injections, and if they don’t work my rheumatologist will
-Plead my case to the Pharmaceutical Agency for Humira, and if that fails,
-Rituximab.

(Source: piccsy.com, via nikkimikki)

Rheumatoid Arthritis Study Drug - MK-8457.

After a year of Enbrel, my rheumatologist is recognising that my body seems to have built up an intolerance. She has recommended a study testing a drug, MK-8457, in patients with an ‘inadequate response or intolerance to anti-TNF therapy’. It’s not a broad study, there will be around 178 people world wide, and just 8 in my country, but I don’t feel too concerned.

A two year commitment with many doctor visits, potentially four hours each, this study still appeals to me if it means dropping Enbrel. Injecting myself gets to me not only physically but psychologically now, and I don’t know if any of you have had similar problems but sometimes I just can’t get the pen to work, and I end up wasting a whole injection.

What are your thoughts on clinical trials? 

You know you haven’t got much on when being told “your haemoglobin levels are normal” makes it a good day.

but really, hurrah! inflammation is down. 

One day at a time

I was diagnosed with RA when I was 19 and I’m 21 now. It’s horrible and it definitely turned my world upside down. If you have any form of arthritis I don’t need to explain the pain or the frustration from the pain. Every single aspect of your life becomes so hard and seems impossible most days. The fatigue and joint pain just knocked me out, even making me take time off from university and work which were two very important things to me. I started a drug treatment with prednisone, methotrexate and other drugs which made me feel ill all of the time. Luckily, 2 years in now, I’ve found a better treatment which has allowed me to gain my freedom of movement back. I know not everyone is so lucky, as this drug is expensive as hell. I am insanely grateful for how my body feels today, but it took a fuck of a long time to get mobility back and my heart goes out to everyone who is still struggling just to get out of bed in the morning. I know what it’s like to feel like everything is hopeless from this disease, and how it feels to think your future is going to be nothing but hardship. I’ve been there. But having any kind of chronic pain disease can leave you stronger or weaker. It’s your choice to be stronger, as cliche as that is. Fight for your life, for your future, because you have one. Don’t let having this disease destroy your passions, your hobbies, your goals, your relationships or friendships. As mad or sad or frustrated or hopeless as you feel in a moment when you think about having arthritis, pull yourself back from it and try to tell yourself that there are twice as many reasons to keep smiling as there are reasons to be upset. There is hope. You have arthritis, it does not have you. Best wishes to everyone who may read this and relate. xo

(Source: nikkimikki)

(Source: coralwolf, via cherubsandwich)

Juvenile Idiopathic Arthritis

I’ve had JIA since 14 and I am now 17. When I first had it it started with a couple of my joints but then got worse. I have it in every single one of my joints even in my jaws. It used to be so bad that I was trapped in my bathroom for 2 hours once because I couldn’t turn the knob, or whenever I yawned I cried because it hurt so much, I could barely sleep because of the pain throughout my body but when I did waking up in the mornings was the worst part of my day. I still struggled going to school. Coming home to my high fevers was the best part of my day because it allowed me to sleep I didn’t know what I had for months because I was on a waiting list to see a rheumatologist. And now I’m still experiencing pain most days but not as bad. I’m learning to cope. But it still gets me emotional when I have my very off days. my immune system has been taking a toll on me too. I’ve been getting wick every other week which is not good for school at all. and I also can’t preform simple tasks and it just frustrates me. The thought of living alone scares me a little.

(Source: simplysomaly)

I’ve noticed recently that my nails are a different colour at the top than at the bottom. There’s a distinct line where it changes, dark pink on the bottom half/lighter pink at the top. Is there anyone who thinks they know why, or who has it too? I changed meds a few months ago, could that be related?

I see these people with RA commenting about how they can’t have sex with their partners because it hurts them too much and while that’s sad, I just need to put it out there - I can’t have sex because I’m too awkward hahaha.