Newly diagnosed
Hiya, I just got diagnosed with early, mild, evolving lupus on Wednesday. It felt quite sudden as that was my first appointment with rheumatology, and after researching a bit more I found that lupus can masquerade as other conditions and you usually go through tests to eliminate the others before a diagnosis. A little part of me feels like I might be misdiagnosed, but my local GPs had been taking blood tests for several different things over the past year and a half, so I assume that was how they ruled out other conditions, and my second-most recent blood tests came up borderline positive for lupus. I only match a few of the symptoms so far (swelling joints on my fingers is the only thing I've really noticed, as well as raynauds, and when I think back there have been some instances where I have developed a sort of light red rash on my face) but the consultant stressed it was mild and very early. I guess I'm posting this because I don't know what to do now? They took more bloods and a urine sample (I presume to check for proteins that might indicate kidney damage). They also prescribed me steroids for the duration of my a-level exams to prevent a flare-up, and hydroxychloroquine, both in tablet form. It seems like I just go to the chemist and start taking them? I feel somewhat at a loss, this is all so new and I'd really like to talk to a GP at my practice (one in particular, but we don't have designated gps, just whoever is free) but I don't know if I'm meant to? Am I going to have follow up appointments, do I just wait until my tests come back, will they contact me or do I contact them? Sorry for the ramble, thinking about it makes my head go a bit fuzzy.
, No sorries needed! Everything you're saying makes perfect sense! Getting a new diagnosis can come along with a lot of different feelings and questions. If your doctor hasn't scheduled a follow-up with you, but you have more questions, I would encourage you to reach out and ask to either talk to the doctor or set up an appointment. You should be able to get your questions answered! Sadly, for many it can take a long time to find the right doctor that will actually listen and provide some clarity and answers. One of our advocates recently wrote an article of her process after being recently diagnosed, I'll include a link in case you are interested in reading more: https://lupus.net/living/acceptance-diagnosis. It's worth noting that just because there is long list of lupus symptoms, that doesn't mean you will necessarily experience all of them. Everyone's lupus journey is unique to them. Keep educating yourself, making sure you are feeling listened to by your healthcare team, keeping track of your symptoms (https://lupus.net/living/symptom-tracker) and reaching out when you need support. You are not alone in this, we are here to listen. Hope this helps!
Gabby (team member)
It can be so hard to deal with a new diagnosis. So many emotions and uncertainties can really plague you. I am glad you are here asking questions because it's important to try and be as educated as you can. All of your questions are spot on with what I asked myself upon diagnosis. I would say to follow the doctor's instructions and call the office back to set up a follow up appointment to discuss how the meds made you feel, check your levels and ask your questions. There are so many different criteria used to determine lupus. You may experience them, and you may not. Couple symptoms with family history and blood and urine levels and that's how they come up with lupus. If you are officially diagnosed, you can always seek a second opinion if you feel it is off. If you feel comfortable with your current doctor, then write all your questions down to ask how he will work with you to deal and cope with lupus. Normally you will have follow-up visits and blood draws to make sure the treatment started is working.
I hope you get some firm answers soon. I know it's so overwhelming right now and that is normal. Keep asking your questions we will let you know our own personal experiences that may help you.
~Racquel~ lupus.net team member
