On a scale of 1-10 (1 = not well, 10 = really well), how well do you feel your physician understands your AS/AxSpa?
I feel really lucky that I have a Rheumatologist who rates as a 10. He participated in a study in Colorado that found out that TNF's and other dmards made MS patients worse, except for Cosentyx. He is incredibly good at asking questions about how I am doing and other symptoms I may have. I also take my husband in with me because, especially if I am not doing well, I may fail to mention something or hear correctly what the doctor said even if I bring a list in with me. I only see him in person twice per year with telemed appointments 2 times in between.
It sounds like you are in great hands.
It's great to hear your husband comes along to your appointments as well. An extra set of ears can be so beneficial. Be well, Doreen (Team Member)
Honestly, sometimes I think I know more about AS than my rheumatologist. Or rather the PA I usually see. I remember starting on methotrexate about 4-5 years ago bc my hands hurt so bad and she said “ AS doesn’t cause pain in your hands but I guess it’s possible to have another autoimmune issue causing it” Ahem. I’ve been told by my pain specialist that it doesn’t cause pain in the feet. I want to say I live in this body. I know what I’m feeling. I know my hip/shoulder/ fingers/toes/ neck/knees hurt. Whatever it is, just help me. Help me stay mobile and have as little pain as possible. On my end I’ll be compliant with all my meds, show up for infusions, procedures, appts. Yet sometimes, no matter how hard we try, that boulder keeps getting heavier as we push it uphill only to watch it roll back to the bottom. Sorry, hard day here. My wish for the rest of you is little pain and more energy.
Nicky (Team Member)
<span style="font-size: 1rem;">I have had foot pain for years, with no treatment other than a test for neuropathy which came out mixed because they could not pin down the symptoms. The doctors forget to keep up with research, I guess. </span>
I agree with you about the boulder, it describes exactly the struggle we face.
I would say a 4. My pcp doesn't seem to know too much. I have been with for 8 years so he did look into it some so he can actually understand what I am trying to explain. He is a good guy and doctor.
I don’t know that my PCP understands my Ax Spa at all. She expects me to go to PT and then not need opioid pain medicine at all anymore. I keep trying to explain that it HURTS to exercise right now. I’ve gotten no treatment since I was diagnosed two months ago. I suppose my Rheumatologist understands Ax Spa, but all he did was tell me I have it and prescribe an immune suppressing injection (Enbrel). 1. I would’ve appreciated him talking to me about it. Like, what can I expect? What should I look out for? He didn’t say anything beyond the diagnosis. 2. His staff are supposed to be working on getting my Enbrel through my insurance and then a charity that’ll pay the $300 Co pay. I’ve heard nothing from them, even when I’ve left them messages. I ask if there’s anything I should be doing, and I hear nothing. I’ve got no idea yet when I’ll get the medicine, and I’m not doing PT until I get it and it helps reduce my pain.
Of course it would be difficult to exercise when you're inflamed and getting no relief from pain, I totally sympathise. Sometimes it can be hard for health professionals to understand what the pain is like. We know theoretically that exercise reduces inflammation, but sometimes without pain relief, many forms of exercise just aren't possible.
In my own experience I've found warm water hydrotherapy and gentle yoga to be helpful when I'm in pain and trying to move (the guys from Yoga for AS online have extra gentle routines especially designed for when you're inflamed). Do you have access to a warm water pool nearby where you could try hydrotherapy? I find even walking laps in the pool loosens me up and brings relief.
I haven't been on Enbrel myself but I know it's a biologic drug in a class of drugs called anti-TNFs or TNF blockers. It's natural you would have a lot of questions about it, and your doctor really is the best person to answer them (as you've already tried to get him to do).
I hope you can remain persistent and don't have to wait too much longer to get the information and treatment you need. In the meantime, I wondered if this article might be a helpful insight into someone else's experience with biologic meds? I found it a great read.
Thinking of you and sending hugs,
Anne-Marie (Patient Leader)
We certainly hear your frustration and hope you will get some answers (and support) soon. In the meantime, this article may provide some helpful information on treatment options for AS/AxSPa: https://axialspondyloarthritis.net/treatment.
Always know this community is here for you.
Reach out anytime, Doreen (Team Member)