Down a Diagnosis Rabbit Hole

I am seronegative as well but, unfortunately that does not mean you don't have RA. All it means is that we don't show up positive for the generally typical blood tests that indicate RA. Basically, RA is not just one illness caused by one specific molecule - it is what they call a "constellation." It can be caused by a number of different molecules of the immune system attacking your own joints and body, and the symptoms are identical. Me, personally, my immune system part that is overactive is called interleukin-1, but other people have different overactive parts - tumor necrosis factor, JAK, interleuken-6, etc. There are medicines for all the different parts and as of now the only way to tell which is for you is by trying the different meds and seeing which one works long term. It is a long haul but sometimes you get lucky and it is the first one you try! Either way, you sound like you have many of the symptoms. Remember, EVERYTHING with RA takes time, lots of time, and tests do not always show results - that doesn't meant it isn't happening it just means the tests didn't show any results. I know, it sounds overwhelming and confusing but just know you are not alone, and we are here to help however we can on this journey. Keep on keepin' on, DPM

Hi, and welcome! I am glad you found us!

So, being newly diagnosed can be an overwhelming time and it doesn't help when you get deluged with more information than you can possibly process all at once. At future appointments, you might bring someone with you to listen and take notes or you can take notes. And, if you and your doctor feel comfortable, you can also record your appointments so you can listen to any information discussed at your leisure. It's hard to remember all the details of a doctor's appointment!

Also, it sounds like your doctor did the right thing by requesting testing be done, including labwork. That labwork is one of the main diagnostic tools used to diagnose RA. And seronegative is a real form of RA. All it means is that your bloodwork numbers might not be high enough to qualify as active RA, but you are experiencing enough other symptoms to make a diagnosis of RA. You can read more about seronegative RA here -- https://rheumatoidarthritis.net/seronegative-diagnosis and here -- https://rheumatoidarthritis.net/living/seronegative-ra-blood-tests-dont-tell-entire-story. Also, I would see if you can get established with a rheumatologist so you will be able to discuss your treatment options more easily. The wait to get in with a new doctor can be lengthy, though, so keep that in mind.

Ok. On to the meds. Steroids are great for bringing down inflammation and pain, but they will not help with the cause of said inflammation and pain. Steroids can definitely be a helpful treatment tool, to a point. Sulfasalazine *is* a strong medication, but, frankly, many medications used to treat RA are pretty strong. Treatments for RA are meant to slow or stop the damage being done to your joints and other parts of your body. Many people choose to roll the dice with these meds for precisely this reason. That said, some of our members decide not to take the medications, due to the potential side effects. It's really your decision how to proceed, but it would be nice if you could discuss this with your doctor. I am sorry you are getting the run around when you are just seeking some clarification. That's not cool.

I cannot offer any medical advice, for your safety (nor do I think that's what you are asking for), but I would definitely try to get established with a rheumatologist you can see on a regular basis. That's pretty important with RA. Also, you might want to start making note of any symptoms you are experiencing so you can share those with the rheumatologist, when you can be seen.

Good luck and please don't hesitate to reach out if you have more questions. We're happy to help in any way we can.

Best, Erin, Team Member.

Dear Erin and Daniel - thank you so much for your quick replies and all the information. I am now taking the sulfasalazine as I found your answers very reassuring. I also got an email for a face to face appointment at the hospital just after your answers. I will take my husband with me to make notes - he has less knowledge of the problem than even I do - and I'm worried he'll think I am turning into a "moaning Minnie"! Like him, I thought that RA was just a variant of osteo - I didn't realise till I looked it up what a big problem it can be for your whole body. At the moment, apart from my painful and fizzy arms and legs, I have a dry cough that keeps me awake a lot, dry eyes, a permanently tear dripping nose, and am very breathless till about lunchtime. I dismissed these all as "old age" "Hay fever" etc. Now I know they were probably earlier indicators - which I've had for at least three years.
Once again, thanks for the replies - it is such a comfort to have someone to talk to!