Rx for Sulfasalazine for seroneg. NEWLY diagnosed RA
Hi there. I am in early stages of RA... Sero-negative and no genetic link so I have been struggling with the diagnosis. Rheumatologist wanting me to go on meds. asap to protect joints. Also no bilateral swelling, only a few sore joints. I am a very active athletic senior but the pain in my wrist & one knee is starting to impact my lifestyle. My GP wanted me to try hydrochoroquine but the Rheum. has written me a prescription for sulfasalazine. I have not started it yet ... so I am reaching out for some support, some anecdotal stories of starting on meds, and to help me navigate this new diagnosis (June 2023) and how to move forward with a positive frame of mind. Right now more in grief mode than anything else.
I’m so sorry to hear about your diagnosis. I can completely understand how crushing it is to hear such a thing and now have to how to deal with so many changes, both physically, mentally, and emotionally. It is a process. But this is a great community with a ton of resources and our members are a great source of support.
While you wait for others in the community to share their experience, I think you might find this information from our website useful. This is an article that talks about the different treatment options for RA- https://rheumatoidarthritis.net/treatment/biologics-treatment-options-for-ra. You might also be interested in this article from our editorial team looking at sulfasalazine and its side effects: https://rheumatoidarthritis.net/treatment/sulfasalazine/. Here's also what members who have tried it had to say about their experience, https://rheumatoidarthritis.net/forums/sulfasalazine, and a wonderful story from our contributor, Lynn who talks about RA and her new reality dealing with her diagnosis.
Lastly, I want to share with you our mental health hub which might spark inspiration for feeling better (https://rheumatoidarthritis.net/ra-and-mental-health). Just know that we are here for you and if you have any questions, please let us know. - Latoya (Team Member)
Thank you for all of this. It is a journey and it certainly helps to have lots of input at my stage... where I am a bit upside down about knowing what to do. Thank you!
I am seronegative negative with no one else in my family for generations having RA as well. It is certainly annoying and awful to try to get doctors to listen to you and find treatment when no blood test show anything besides inflammation. I have been living with this disease for over thirty years, though, so I am considerably farther along in my journey. What I can tell you is that the time around diagnosis is confusing, scary and overwhelming. What you are feeling is totally normal. I know that may not help much but at least you know you are not alone. What I can offer you is that most people eventually do find a routine that works for them and different ways to cope that work for them. It may take some time, for sure, but there is life after RA, I promise. Please let us know if there’s anything we can do to help or if you have any questions don’t hesitate to ask. Keep on keepin’ on, DPM
Thank you Daniel And Latoya ... I really appreciate the time you took to answer. Latoya for the links And Daniel for the confirmation that feeling overwhelmed by the "newness" of this diagnosis is pretty normal. Right now I am in Search & Understand mode... trying to sort out the medication options (not very excited about any of them since I am on zero meds otherwise), also how to support my joints/body through this. Re. sports: I tend to push past normal muscle strain so am trying to dial it down now with RA and that affects my mental health to not be able to play sports the same way. The oddest thing about this disease for me is how it feels like my body is haunted... One day I feel fine, and the next I will have sore wrists or a finger or a knee. All over the map and when I try to find a causative agent (did I eat something that caused this? was I overtired? did I exert myself too much? ...) I can't pinpoint anything. I would love to get some feedback from people who can help me understand the difference between hydrochloquine and Sulfasalazine for mild RA as far as what they experienced (Positive re. stopping pain, negative re. side-effects). It is a tough one when the Rheum. says "there is no cure" but then also said she thinks my RA is slow-moving. Thanks for listening. IT is a rough road to navigate alone! SO I REALLY APPRECIATE any info/support right now! THANKS.
Ha ha, that is so interesting, that is the exact opposite! The doctors had to convince you it was serious! I hope that you have found someone who you like, and who will work with you as opposed to working around you. Ha ha. The one thing I will say is that in my decades of experience it is better to prevent the damage now than try to remedy it later, if you are trying to decide whether or not to treat it. I know the side effects are daunting, but wearing a fixator on your ankle for 6 months with 7 pins going thru your leg is much less pleasant, trust me on that. 😀 Whatever you decide, we will be here! Keep on keepin’on, DPM Thank you and Answer42 for your comments ... I am also struggling with being diagnosed when so far: no genetics (was tested), sero-neg., don;t fit the body type or age category etc. The biggest thing for me with wrapping my head around this is that within 8 months I because unwell (2 life-threatening anaphalaxis and kept in hospital overnight, GI issues small intestine non-absorption mainly, one swollen joint finger)...the xray of one finger was the triggering event which sent me to specialists. They think I am RA but that it will be slow developing and they are determined to put me on meds pre joint damage (so I hear you Daniel)... and I am respecting their knowledge but also I am reluctant to go on meds when I am rarely sore anywhere for the last month. Plus my liability is that I am not on any meds and rarely even take Tylenol. I said to the Rheumatologist that I feel like my body is haunted these days ... I can go for days or more with no pain. ALSO I would love to have a more integrative approach to my diagnosis & treatment ... What about the odd anaphalaxis (no causative agent found) and the ongoing GI issues. Anyway... any other input you have is SO helpful. I am so new to this disease profile. Thanks for any and all feedback. It helps immensely not to feel alone.
Hi
. Getting a rheumatoid arthritis diagnosis can certainly be difficult and it is more than understandable to struggle. I want to stress that getting a diagnosis is not an end, but a beginning of the opportunity to make things better. On top of the excellent information from Latoya I want to share this article from our patient leader Lisa on ten things she wished she knew when diagnosed: https://rheumatoidarthritis.net/living/diagnosis-awareness.
Concerning the diagnosis, I want to stress that early RA is not always bilateral and this is more so with seronegative RA. It is great to hear that your doctor is looking to be aggressive with treatment to avoid damage. This research article looks at the benefits of early treatment to avoid damage: https://rmdopen.bmj.com/content/1/Suppl_1/e000057. Hoping you feel some improvement soon (note: it can take 1 to 3 months before symptoms improve with sulfasalazine). This community is here for you and please feel free to keep us posted on how you are doing and to ask additional questions. Best, Richard (RheumatoidArthritis.net Team)Thanks again. I will go deeper into those links. Appreciated. Plus I will start a new thread as i will be starting those meds and am really wanting some feedback/tips on how to minimize side effects. Here is some other reading for you 😀 ... https://pubmed.ncbi.nlm.nih.gov/28948174/ Some really good resources in here about the GI implications in diagnosing and treating RA ... this was my first issue. GI problems. Thanks . Brooke
Hi Brooke (
). The potential connection with the microbiome is very interesting. Gut issues have long been an issue (although much smaller) for my wife, Kelly Mack, who is a contributor here (Kelly was diagnosed with juvenile RA at age two, almost 45 years ago and you can find her bio here: https://rheumatoidarthritis.net/community/experts/kelly-mack). It has always been difficult to know what part of it is the autoimmune condition and what is the medications. As a side note: I also happen to be a moderator over on our sister-site for inflammatory bowel disease, which is also autoimmune, at https://inflammatoryboweldisease.net/. I think a Forum thread on GI issues and microbiome connections to RA and autoimmune conditions in general is a great idea. Best, Richard (RheumatoidArthritis.net Team)
