To shoot up, or not shoot up.

News like this just plain freaks me out and reminds me that I am still largely a guinea pig for medical science.

When a friend emailed me after reading this to see if I was on any of them, it brought up a dilemma that I think many people with RA and other autoimmune diseases struggle with all the time - at least I do: which is worse, the disease or the meds? I think it is increasingly worrying when you are young and know you have decades (potentially) ahead of you on these meds, or others like them.

It's a bit of a 'possibly damned if you do, definitely damned if you don't' situation.  Back in November and December, I was on a fast track to not being able to walk without assistance, among other things, and in so much pain and so f****** tired that the choice to go on enbrel didn't even feel like a choice. It felt like a necessity.  I knew that there were risks associated with it, including a higher risk to infections, more serious infections and, according to some, a higher risk of lymphoma since the meds work by suppressing my immune system.  I've reacted pretty well to the meds, luckily, without troubling infections (knock on wood!!).  Although it's always lingering in the back of my mind that no one out there really knows the long term impact of these drugs, I mostly don't think about it because I'm so beyond grateful for what I've gotten back since being on them.

News like this drives home the fact that there really is a lot of unknown territory.  So what is a gal to do? I guess not much, other than to be as vigilant as I can be about my health.  I'm not willing to forsake the drugs that are keeping me mobile and a part of my life, at least not until something scarier comes out about them (let's hope not!!!).

It's one hell of a choice, though.

Comments

[millicent]

I saw this in yesterday's paper, but you know what--life is a crapshoot. You are under the care of a great team of doctors who think this is a good med for you. Other than the RA, you're healthy (& young), so go ahead,shoot up & enjoy each day!

[Gabriele]

Hey, I just found your blog and I also am a 20 something with RA...it sucks...big time! I also read the article that you are talking about, and I too can't figure out which is worse. All I know is that the only way I can function is with my medication, and without it, I am in bad shape. So, your screwed either way. Anyway, if you want, check out my blog...just a place to share my struggles with RA and such, if you want it is http://www.jointogether4ra.blogspot.com

Thanks,
Gabriele

I only recently found your site, and while I am a few years older (okay, I just turned 40), I was dx with RA when I was 15, and have literally gone up what I call the 'anti-inflammatory ladder.' Last year I experienced possibly the worst months-long episode of RA combined with the oh-so-lovely-not-additional-dx of fibromyalgia I had ever experienced in 25 years. I could barely walk, sleep, go up stairs, sit, stand, you name it. Add to the joint pain excruciating muscle pain, and I was in the worst state- both physically and mentally. I hadn't realized it could be this bad. Things finally started getting better when my doc (in NYC, tho I now live in Western Mass) switched me from Enbrel to Humira, and I finally conceded to starting Methotrexate, which for years I didn't want, because I DON'T HAVE CANCER, JUST RA!!! And thankfully, after about two months on this (along with the ol' standby Celebrex) I began to feel human again. That experience of feeling so god-awful terrible helped me realize how scary this disease can really be, and the idea of having to be completely dependent on meds seemed only slightly more scary. Feeling better sure outweighs the scariness, in my opinion. Gotta go, but also wanted to say, I love the site/blog.

[Sara]

Hi Gabriele,
I know-talk about being stuck between a rock and hard place. Thanks for letting me know about your blog-I'll definitely check it out!

[Sara]

Hey-
thanks for writing-i felt the same way about methotrexate! so far, i haven't had to go that route, but i'm glad that you seem to have finally found a combo that is working for you. God-fibromyalgia and RA- you have really been through the ringer. I agree-feeling better wins.

[vtsummers]

Hi,
I didn't have time to finish writing, as I was at work. One of the things I think you clearly have going for you is that these medications are available to you early on in your disease. Had these TNF meds been around in the late 80's/early 90's I know my RA would not be nearly as bad as it has become- not in terms of how it feels day-to-day, because I'm doing just fine (no fibromyalgia and much more manageable symptoms), but in terms of the progression and damage to my joints. TNF drugs have altered the landscape for those who can tolerate them, and there is a lot to be happy about with these meds around.
And I also just did a search on the bacterial infection referred to in that NYT article- seems as tho folks who spend their time near bat and bird shit have the highest risk.......thankfully, that ain't me, and if you're an urban gal, it's likely not you either.
Let's hear from more folks! By the way, my name is Elana

[Sara]

Hey Elana,

Right on! It's true-if I had been diagnosed even 10 years ago, I likely would have sustained way more permanent damage than I have, and that is absolutely thanks to the new meds.

Good point on not spending a lot of time near bird and bat shit. that had me laughing.