Just about two years ago, I wrote a post about life as a two-shot girl lamenting the fact that my rheumatologist at the time didn't think I was quite ready to halve my dosage of Enbrel. Though a wee bit disappointed, I felt partially relieved as the idea of shaking up my drug regimen, though it was working pretty well, freaked me out. When all was said and done, I was fine with not rocking the pharmaboat. In other words, if it ain't broke, don't stop medicating it.
That is no longer the case. After three full years of shooting up not just once, but twice a week due to the insane injection-site reactions the 50mg shot gave me, I am beyond over my double-the-shooting-up-fun drug regimen. Along with the physical fatigue that RA has brought, I have developed a bit of drug fatigue. Mind you, I am diligent in taking them all, but let's just say it's not exactly the high point of my day or week.
Now, I know that many of you are still struggling to find a drug or treatment that works, so I feel a little guilty sharing this news, but I'm so excited about it that I just can't help it. During my appointment with my rheumatologist today, we spent about an hour talking over my plethora of questions and discussing how I'd been feeling since my last appointment. I told him that I'd had to go off my shots for a period of three weeks not once, but twice in the last few months due to nasty colds....but that while off them, I hadn't noticed any increase in pain, fatigue or inflammation. We talked awhile more about how amazing it was that studies are now being done on how to safely taper RA patients off their meds- something that was beyond inconceivable only ten years ago. He examined my joints, gave me a little smile, and declared that I could go down to one 25mg shot of Enbrel a week!!!!!! Now, this is a only a trial-if my symptoms increase, I'll be back to two shots before you can say biologic. I have to get additional X-rays to monitor my joints and keep a journal about any changes I notice BUT as of now, I am cutting my dosage in half.
Take that, RA!
I'm still keeping on with the plaquenil as much as before, but maybe, just maybe, there are fewer shots in my future. I'm keeping my fingers crossed that this goes well, and so are my poor little thighs (OK, they aren't so little at the moment, but that's another post), which are so over being pricked every week.
For all of you who are reading this and thinking, gee, how spiffy for her, but I can't even find a drug that works yet, try to hang on. My chat with my rheumatologist today offered a few glimpses into some promising and exciting drugs and research studies that are being done right now. There are several new drugs in the pipeline that will hopefully be ready for FDA approval within the year or soon after, and they don't involve needles! Plus, he himself is doing research on how to better and more precisely measure patients' individual experiences with their disease, including how it impacts their daily life, in order to deliver tailor-made treatment and management programs for each person with RA. I think that things are going to get better, bit by bit, for all of us. At least they are if my rheumatologist has anything to do with it (he really is totally awesome, if you can't already tell)!
As for me, when next Monday rolls around, this sick chick will only be getting one shot, and that feels pretty darn good.
WOOHOO!
Posted by: Catherine Shattuck | February 02, 2011 at 10:18 PM
Woo-hoo!! :D
That's great to hear.
Posted by: WarmSocks | February 02, 2011 at 10:21 PM
Have you tried the Enbrel Sureclick? I used to get huge bruises at my injection site with the old standard needle like the on in your picture. With the Sureclick I only see tiny bruises on occasion.
Posted by: Meg W | February 02, 2011 at 10:35 PM
Made me feel good to read this. Very happy for you.
Posted by: www.facebook.com/profile.php?id=728922186 | February 02, 2011 at 11:20 PM
Excellent – so thrilled for you! Hope it all works out! :) L
Posted by: Laurie | February 03, 2011 at 07:26 AM
Thanks everyone! I appreciate the well-wishes!
Posted by: sara | February 03, 2011 at 07:43 AM
This is awesome news! Thanks so much for sharing it. As someone that desperately needs to hear RA success stories, I appreciate this a lot. Good luck!
Posted by: Cathy | February 03, 2011 at 09:08 AM
This is so awesome! Your doctor sounds amazing. I need to get in there!
Congrats Sara.
Posted by: Emily Henninger | February 03, 2011 at 11:29 AM
Congrats! While I am so thankful for the medical miracles available to us, I say the fewer you need to use, the better. Fingers crossed that the lower dosage works amazingly well for you.
Posted by: Carla | February 03, 2011 at 06:19 PM
Good for you! I am pleased. I am one of those who has yet to find relief. We start Cimzia this weekend - my most recent failures include Enbrel and Humiria. A few years ago I failed to get any satisfaction from Remicade too. But again I am thrilled for you and I really hope it works for you.
Posted by: Stevi Wood | February 03, 2011 at 07:29 PM
Awesome news! I understand why you're reluctant to seem like you're 'boasting', but it's not like that at all. I've followed your blog for over a year and it's been a bright light which has made me think 'I can have a normal 20-something life despite this disease'. And so far I have been pretty lucky too. It's good to see successes, there are so many sad stories out there. Yay for you!
Posted by: Squirrel | February 04, 2011 at 01:08 PM
Thanks everyone- I really do appreciate the support, especially from those of you who are having a hard time finding something that works. It's not always easy to be generous and happy for others when you are in the midst of pain.
Posted by: sara | February 05, 2011 at 09:32 PM
I feel like giving up, Sara.
I'm only 21.
I can't do this...
Posted by: Leela | February 06, 2011 at 08:47 PM
Hi Leela,
I had moments where I, too, felt like this was going to be unbearable and impossible, but three years later, it has gotten so much better, and I hear from people all the time who have been living with RA and living their lives for decades. I was very depressed after my diagnosis- if you have not done so already, I would strongly recommend going to therapy. I was already in therapy when I was diagnosed, and it helped me tremendously in moments like these. You aren't alone, and you can get through this.
Hang in there-
Sara
Posted by: sara | February 06, 2011 at 08:52 PM
Thank you. Is joint deformation inevitable even with medication?
Posted by: Leela | February 06, 2011 at 10:12 PM
Hi Leena,
The prognosis these days is much more optimistic, so I don't know that joint deformation is completely inevitable. If you are able to get on meds quickly that succeed in stopping or seriously slowing the progression of the disease, then that will help prevent any further joint damage. Everyone responds differently to different meds, and for those of us who get this in our 20's and 30's, we obviously have a long way to go, and some of these drugs are new enough that no one really knows yet how long they will work for each individual, but if you can keep the RA controlled, the damage to your joints will be minimal. This is definitely something to talk over more with your rheumatologist, though.
S
Posted by: sara | February 06, 2011 at 10:19 PM
Yay! I'm so happy for you. I totally relate to this post--I give myself MTX injections every week and I DREAD them. It's not that big of a deal, right, but the smell of the alcohol wipes is enough to just completely gross me out and make me nauseated before the MTX even kicks in. So--I am very glad to hear you will have fewer needles in your life :)
Posted by: Sarah | February 07, 2011 at 02:15 PM
Congratulations!!
Posted by: Martine | February 07, 2011 at 08:02 PM
That is awesome. I dread my 1x per week MTX shot. Like the previous post just seeing that nasty yellow vial makes me nauses now. I keep wishing my brother (he's a nurse) was around to inject me. To go from 2 to 1 is fabulous! Congrats.
Posted by: Margaret | February 07, 2011 at 11:16 PM
If you don't mind me asking, what is your rheumatologists name? I am an undergrad at Hopkins, but I haven't been going to Hopkins Med because my insurance won't cover it. But, I'm getting desparate so I might have to start...
Posted by: T | February 12, 2011 at 11:56 PM
What great news Sara! I'm on Humira which is bi-monthly and I can't even imagine what it would be like to inject bi-weekly.
I just wanted to let you know about my experience so you have the information. I too, with the full support of my doctor, wanted to attempt to reduce my meds. I did it slowly, and at my lowest dose, I was on Humira every 6 weeks and three 2.5 mg metho pills a week. My problem? I reduced too far and had a relapse (I had been in medicated remission until then) in July 2010. So I'm back on the bi-monthly Humira (do you have that drug in the US? It's really done a lot for us here in Canada) and 7 metho pills. Sometimes I take the injection instead of the pills when I'm feeling particularly bad that week. Six months on and I am doing much better, and hopefully will be able to reduce my metho as it's the one that makes me feel the most nauseous. I'll ask at my appointment
Everyone is different and I'm hopeful that you will have no problems on your quest to be less dependent on medication. Good luck and congrats!
Posted by: Kat | March 04, 2011 at 08:06 PM
good for you, Sara! I'm still struggling with the decision whether to even start Enbrel. Scared about side effects, but I also feel like crap every day. I don't know what a flare-up is since I have hurt every day (different joints)since RA joined my life. (do biologics make the pain and fatigue completely disappear?)thanks for sharing that non-injection drugs are in the pipeline.
Posted by: nancy taylor | March 07, 2011 at 09:32 AM