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Having a good rheumatologist is key! I asked for a new fibromyalgia med I'd heard about and explained why I thought it would benefit me and he just....prescribed it???
(The med is Tonmya BTW. It just came out in August of 2025 and is supposed to help relieve fatigue, sleep problems, and Neuro skeletal muscle pain.)
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Reminder that a lot of people with rheumatoid arthritis are seronegative (I.e. don't produce the typical antibodies usually associated with RA).
I've seen sources ranging between 20 to 40 % of people with RA* are seronegative.
If you have worsening joint pain that is symmetrical (same joints in both hands at once, for example), don't let your doc stop at "Good news, your blood work is normal!"
Ask for imaging of your dominant hand. This is how a lot of us with seronegative arthritis get diagnosed.
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* Be aware a lot of doctors/sources will call it "seronegative arthritis" vs "seronegative rheumatoid arthritis." They're just words. You need treatment that will help you, period.
Rheumatology apt was today. It was a physically difficult day but very productive. The TNF inhibitor I was on (Enbrel Autoinjector once per week) was really great at first but has gradually been failing in 2025. My autoimmune diseases have been flaring like crazy so they are going to put me on a JAK inhibitor which is a step up in risky side effects. They gave me two options but we’re going to start with Rinvoq which is a once a day pill. I won’t have to do anymore Enbrel injections. I will continue with the weekly methotrexate injections but they are less painful for me so I don’t mind.
Besides that she’s banning me from taking ibuprofen (boo) and giving me a Rx for a different NSAID (I think it’s Celecoxib) It’s only one pill a day and she said if I really need some extra I can take “Tylenol Arthritis 8hrs”
Besides that she’s really eager for my Endocrinologist apt in September (me too gurl I’ve been waiting for half a year) and also suggests I follow up with an OBGYN bc I’ve been having a period every two weeks for five months and it’s killing me 💀
Taravali’s in heat, Mandana’s back is sore and I’m a mess so we’re fighting over the heating pad tonight 😂
Rheumatology might be one of the most useless specialists (from a patient perspective)
Me: *waits 8 months*
Me: oh goody I finally get to go to the rheumatologist.
Rheum: Hmmm *presses skin* that hurt?
Me: mhmm
Rheum: Kay you probably have *insert diagnosis here*
Me: Goody
Rheum: Now never come back because we don't treat that, only diagnose it :)
Tomorrow, I have an appointment an hour away with a rheumatologist to discuss my joint pain and fatigue. My new primary dr couldn't believe my old Dr's never sent me to see a rheumatologist before since I've been complaining about my joint pain for years, so she sent me right away and now I'm so nervous. I don't know what to expect? I just want to be taken seriously and to hopefully be on the right track to finding some answers on what's going on within my body. Fingers crossed, I hope it goes well🤞
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Got my first "we don't accept patients with your insurance" experience outside of dental offices today. Its a rheumatology office which is supposed to be really good so of course they only want to help a select few patients and Medicaid patients aren't one of them.
Since the move in with my parents, I have since got an appointment scheduled for both primary care and rheumatology!
I'm hoping to get a new MRI for my back since the last one was done in 2021, and a recent x-ray has shown changes in my lumbar since then.
Here's to hoping the initial appointments go well!
Health update!
So for those following health stuff, I got some great news today. I don't have COPD or Pulmonary Hypertension.
I did find out that my lungs are smaller than the average population (maybe about 90% the size) so they're working a bit harder than everyone else's and that's part of why I've been prone to pneumonia (which I started getting as a teen) and chronic bronchitis.
I also have a new trial medication to start, and some bloodtests to get. But my lungs overall are doing really well and I don't have to see the lung specialist again unless things get suddenly worse.
We've been staring down a possible diagnosis that would give me 2-5 years left to live for 6 months now, and getting a reprieve has been a huge relief and in its own way kind of exhausting.
But good good good news, and that makes me super happy <333
