Not officially diagnosed but being treated
My name is Ashley and I just turned 45. Back in sept of 2022, i suddenly became semi bedridden with severe knee pains and hip pains on both sides every day - being much worse by the night time. then came neuropathy on the bottom of both of my feet. I spent every night trying to combat these pains with ice and heat pads and medications for three months before my primary suggested I go see a rheumatologist. I said i'm too young to be having no arthritis but I needed someone to figure this out and help me so i went. After a round of bloodwork and some physical examinations, the doctor told me he cannot give me an official written diagnosis but can start treatment to help me with the inflammation and pain. I was started on 5mg of predisone twice a day for 10 days and nothing happened so got bumped to 10mg twice a day. im still where i was. i though 10mg twice a day would do something. I'm needing to take my pain meds which are not strong bc i refuse to be on vicodin daily. what should i do?
Hi
. RA and other related arthritic conditions can be difficult to diagnose. Unlike osteoarthritis, they are autoimmune and can strike at any age (we have contributors with the juvenile form diagnosed as young as two). I want to share with you this article giving an overview of other arthritic conditions, besides RA: https://rheumatoidarthritis.net/types-of-arthritis. Did the rheumatologist suggest any findings from your blood work? There is a type of RA, seronegative, that does not show up on the rheumatoid factor test, but this can be up to 1/3 of cases. This article goes into more detail: https://rheumatoidarthritis.net/seronegative-diagnosis.
Please don't hesitate to ask the doctor what they think the blood work is or is not showing, what conditions it could be, and what treatments may be appropriate for your case. People here understand your frustration and are here for you. Feel free, if you like, to keep us posted on how you are doing and ask further questions. Hoping you get some answers and relief soon. Best, Richard (RheumatoidArthritis.net Team)
, I just want to echo what Richard wrote. But I do want to add that I find it a little odd that the doctor won't give you a written diagnosis. Keep in mind that I am not a medical professional, but that just sounds weird to me. I would definitely talk to him about getting an official diagnosis or more testing, if needed. And you are not too young to be dealing with certain forms of arthritis.
I hope you start getting some relief from the pain and that you get a clear diagnosis very soon.
Best, Erin, RheumatoidArthritis.net Team Member.Hi @RA Sam. Unfortunately, it looks like your post was cut short. I want to note that the criticism of the guidelines I mentioned came from an academic paper (I would need to find it again). There is also this other paper with similar findings on the impact of the guidelines on seronegative patients: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6947665/. Of course, professionals and research can disagree.
I noticed that you mentioned past colleagues on the ACS Board, are you a rheumatologist? I am not a medical professional, but I have seen that many academic publications give different numbers for the percentage of seronegative patients, with 20% often being the floor. I can't help but wonder if the different numbers cited lend to the confusion. Of course, as a former professional stats person, I understand the impossibility of ever getting a precise percentage on something like this.
Again, I'm not a medical professional. I just know and interact with a lot of RA patients and a lot of seronegative people express confusion and feeling left behind. I know this is anecdotal and not scientific, but this is why I rely on research like I cited earlier which concludes "This study demonstrates that seronegative patients experience a delay in meeting ACR/EULAR classification criteria, receiving a clinical diagnosis of RA, and initiating treatment compared with seropositive patients" and further states "These findings are in agreement with existing literature demonstrating that the 2010 ACR/EULAR criteria are more sensitive in identifying early seropositive disease. Further work is necessary to identify factors that contribute to early diagnosis and treatment initiation in RA, particularly for patients with seronegative RA, in order to improve patient outcomes for all subgroups." Best, Richard (RheumatoidArthritis.net Team)
Hi @RA Sam. I am not sure why your comments are truncating. There is no limit. If you are concerned it might happen again, you could write your response in Word, and then copy and pasted it here. I often do that with longer responses and I've not had any issues. Thanks for your patience. - Lori (Team Member)
Thank you both for your encouragement and information (esp about the seronegative RA). I spoke to the doctor and he doesn't want to increase my prednisone since I'm already on 20mg/day. He sounded very reluctant to start me on any other types of RA medications. He told me to continue my current dosage for another 10 days and see if I notice any difference. It's amazing how I was willing to fight tooth and nail for my autistic son but when it comes to me I just take what the doctor says even if I'm frustrated. I still have so much to learn about RA so I don't feel confident to advocate for myself right now.
What other treatment options/medications are there for RA besides prednisone?
@RA Sam Hi there! I am not exactly sure why it got cut off. I think that sometimes the page may not have not have fully caught the sentence in its cache. I'd just try to pause a second before submitting next time to give the page time to catch-up so to speak and see if that helps! Warmly, - Reggie, team member
my RA doesn’t show up in my blood either. I have officially diagnosed for over 15 years.
