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feeling overwhelmed! need some advice

hello! I'm new here, was diagnosed last week. reading your stories has really helped but I still feel a bit scared and ... stunned?

some backstory. last autumn I've had chronic pyelonephritis worsen due to a kidney stone so I've been getting treatment for it since that time. In october the CRP was 14 and a physician told me to visit a rheumatologist. I did, anti-CCP showed 99 but the hip joints X ray was clear. After that my condition got worse and I was hospitalized a couple of times. Finally this past week I made it to the other rheumatologist and she immediately told me I've got RA after looking at my hands and the anti-CCP test. I'm taking plaquenil and sulfasalazin, the usual. it makes me a bit light headed and nauseous but it's okay I guess.

I don't know why but after I post this half of the text disappears; I'll post the rest to replies

  1. The thing is I can't think of ANYTHING except this new and shiny condition I've just got. it'll get better with time, I'm sure, but right now it's just unbereable. I'm not in severe pain, it is mild and dull and only sometimes sharp (when I get up mostly, or spend time in a forest, or on rainy days). Still I'm terrified it will get worse. Will I be able to hold a pencil to draw? To play guitar? I'm studying at uni, the midterm exams start in 20 days and then we'll have outdoor practice for more than a month. I feel like I can't prepare for exams or do anything at all. is there even a way out?? :___: My profession requires computer work, working with plants outside, and not knowing if I'll be able to work makes me nauseous. I've been feeling depressed for the past Godknowshowmany months and it, surprise. got even worse :"D

    ah this is such a rant but I hope you understand! maybe there are people out there who are going through similar thing? please let me know what you think.

    1. I feel for you being newly diagnosed. Try to take it slow & realize there are treatments available, people do go into remission & there is support such as this website to help you not feel alone. I would talk to your professor about having been diagnosed with RA & perhaps he/she will be understanding of your situation during examination time. I do not know your career but it sounds like Forestry or Sciences outdoors so they would understand the Biology behind autoimmune disease. I wish you really the best of care & that you are calmed.

    2. thank you so much it means a lot to me <3

  2. I was diagnosed about 30 years ago. It floored me. Luckily I was sent to a great rheumatologist and got treatment right away.

    Most insurances require you to "fail" a lower level drug before they move you up the ladder to the more costly drugs. Most people start with the drugs you have been given. If after a reasonable period of time you're not much better, be sure to let your rheumatologist know. Keeping quiet and brave is NOT what is needed. Many of us have to complain in order to be heard and to move up the ladder to the better drugs.

    That said, I started on Methotrexate and while it greatly improved my symptoms, each year the dose was increased and I was still dealing with pain. Then the biologics came on the market and I was put on Humira. For me it was a game changer. I got my life back. True, damaged joints didn't turn normal.....but the pain and inflammation went away.

    It's up to you to be your own best advocate. If it hurts, say so. Don't "settle" for a drug if you clearly need something better. Speak up.

    And just know that it DOES get better.

    1. I'm glad you're better now! Thank you

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