When did you know it was time to start a biologic?
Hello everyone. I just met with my new rheumatologist for the first time today after my family physician diagnosed me with Ankylosing Spondylitis about 2 months ago. I only met with him for about 15 minutes and was a little surprised when he quickly brought up starting me on Enbrel (after also mentioning that he hasn’t reviewed my X-rays). Now, I wouldn’t say I live with a 10/10 for pain everyday (not that I think I should have to) but I just don’t know if starting a biologic right off the bat is something I want to do, but this is new territory for me and I’m not sure how to navigate any of this. There are a fair number of days that I feel pretty good. I’m also absolutely terrified of having to give myself a shot every week- so there’s that. So now my question is, when did YOU know it was right for you to start a biologic? Was there a moment in your disease where you were like “this is the last straw and I want these expensive, lifelong meds that might not be a good fit for me”. Thanks for listening and for any wisdom from the been there done that crew
I use Embrel every Saturday and the pain has significantly reduced. I self-inject and rotate the injection site. Awesome…
Glad to hear the pain’s been way better! With the self-injection, do you have a go-to spot that’s easiest for you, or do you keep switching it up every time? -Latoya (Team Member) I utilize injections in my upper thighs, 1X in the right thigh, and the next injection in the left, and I inject on the far right side, then on the far left side, higher and lower portions of the thighs, in other words, I keep moving targets so that the results are better, It also prevents bruising, and that is all there is to it.
I have experienced much less pain, and have more mobility to attempt to bring the strength back into my body. I am a former Marine and have always wanted to keep my strength, so that is what I do.
Thank you for asking. JustGlenn
after my neck
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How are things going today?
~Doreen (Team Member)
I think I have had AS since forever. Always bone pain while growing up. I was diagnosed in 2017. I passed on the gene to one of my kids and a grandchild. I also have MS. I had recently stopped taking the recommended MS drugs because of side effects, so I strongly resisted going on any biologic. I had been having neck pain for years, and started having pain that prevented sleep because of leg and back spasams. I was sent to a pain doctor, which really helped. However I kept having more and different pain almost constantly. Unfortunately it was difficult to get into a rheumatologist. When I did get iin, I found that my thoracic spine was fused as was most of my neck. I felt really stupid for not starting the biologic (Cosentyx) sooner. Because I knew that the biologic would reduce inflammation, which could reduce pain, I prayede it would hopefully stop progression. When I stopped the MS drug, new information about diet and MS came out. I started the AIP paleo diet. I also dedicated myself to exercise. I have had no change in the MS for years. I hope the same is true for the AS.
-! It's commendable that you have explored alternative approaches like the AIP paleo diet and dedicated yourself to exercise. And it's reassuring that you've experienced stability with your MS for years. I truthfully share your hope that the same will hold true for managing your ankylosing spondylitis. Your proactive approach to managing your health is admirable, and I'm rooting for continued stability and well-being on your journey. Thanks for sharing and being open about your journey - Thoughtfully, Rebecca (team member)
Hi areser. I agree with the others: you need a full workup of blood tests and x-rays before any medication should be recommended or taken.
(As I was explaining to my spouse last night,) AS meds seem to have a few levels, based on what works for you: 1 = NSAID, 2 = DMARDs, 3 = biologics (please everyone forgive me if I'm way off base here... I've researched this to death online and think I have a basic understanding of my options).
You might find this video helpful:
https://www.webmd.com/rheumatoid-arthritis/video/video-dmard-vs-biologic#:~:text=That's%20mostly%20due%20to%20two,components%20of%20your%20immune%20system.
As for when you'll "know"... There may come a time when your physical complaints are not being helped by NSAIDs.Like you, a rheumatologist recommended I begin biologics right away at my very first appointment... And this was at the beginning of the pandemic and my appointment was done via a video call! Crazy. I felt exactly as you did, and decided I'd wait; I honestly didn't feel "ready" to be putting a new drug into my body and didn't really feel that I was suffering enough to justify any potential side effects. Since then, I'm encouraged to read here how many people are grateful for these drugs.
Almost three years later, I'm starting to feel quite fatigued now, and would really like to try to do something about that. I've had to start being very intentional about how often I use our stairs, am mindful of how many physical tasks/chores I can handle in a given day, and I've started to go to bed earlier. All of this is helping my energy reserves for the next day, but I'd still like to have more energy/feel more like my old self. So I think I may be ready to possibly try a prescription. I got all the tests done a few weeks ago by my new rheumatologist (wow they took so much blood and I've never had that many Xrays in one day!). My follow-up appointment happens right after the holidays; her forecast is to recommend TNFi "if evidence of axial involvement," or Methotrexate "if no clearly axial involvement."
Question for readers: Have any of the AS medications helped improve your energy level? That is something I'd love to know, and would be my primary motivation for trying something beyond NSAIDs.
Thanks, happy holidays, and good luck!
