Welcome my Spoonie Sisters to this episode that I want to call Welcome to your First Rheumatology Appointment . Aren't you lucky Walking into my first rheumatology appointment in 2011, ? It felt overwhelming , but knowing what to ask and what to expect made all the difference in navigating my autoinflammatory arthritis journey .
Later , I was diagnosed with rheumatoid arthritis , so here's what I learned and what you need to know before your first visit . Five things to know . Medical history is key . Bring a detailed list of your symptoms , including when they started , how they affect your daily life and any patterns that you've noticed . Previous tests and medications .
Have a record of any prior blood tests . This means imaging , x-rays or MRIs , and medications you've tried , including over-the-counter ones too . Next , we have physical exam expectations . The rheumatologist will likely check your joints for swelling , tenderness and movement range . Be prepared for a thorough physical examination . Treatment may take time and movement range .
Be prepared for a thorough physical examination . Treatment may take time . So remember that the diagnosis and treatment process can be complex and finding the right medication for you might require a lot of trial and error . So be patient . Next you have chronic illness management .
Understand that your diagnosis is a long-term condition that requires ongoing management , not just a one-time treatment . I think you know a lot of us go in there and we are hopeful that you are going to prescribe this magical pill for us , and then the next day or a week later , we feel normal and healthy , and it doesn't really work that way .
Okay , so next , what I want to tell you is the five questions that I recommend that you ask in your first appointment . So , number one what type of autoinflammatory illness do I have and how severe is it ? This will help you understand the scope of your condition and its possible progression . Number two what are my treatment options and how do they work ?
Now , understanding your options from the disease modifying rheumatic medications to biologics will help you make informed decisions . Number three what lifestyle changes can I make to support my treatment ? Ask about diet , exercise and other changes you can implement to improve your quality of life .
And number four how will we monitor my progress and how often should I follow up ? This ensures you stay on track with treatment and allows for timely adjustments . And lastly , number five are there any potential side effects or long-term risks with these medications ? Knowing this helps you weigh the benefits and the risks for your treatment plan .
And , of course , last of all , I want to leave you with this . Here is a list of the disease modifying drugs for autoimmune disease and their most significant side effects . Okay , we're going to start with methotrexate . Its side effects are fatigue , nausea , liver toxicity , lowered immune function . I mean there's other things too , but those are the main ones .
Hydroxychloroquine , or some people call it Plaquenil , these side effects typically you need to worry about vision changes and they will recommend that you see your eye doctor twice a year and keep an eye on headaches and dizziness . Number three sulfasalazine . These side effects are things like upset stomach , skin rashes and liver issues .
And next we've got Lothlunamide or Arava . The side effects are diarrhea , liver damage and hair thing . And then there is one called zathioprine or imuron , and that's not what I've been on , so I'm not super familiar with it , but from my research the side effects are stomach irritation , loss of appetite and mouth sores .
And then , of course , there's biologics like Humira and Bororemicade , and these side effects well , they're a risk of infections , injection site reactions and allergic reactions . And then , of course , lastly , what I want to share with you is about JAK inhibitors , and these set of side effects can be things like blood clots , infections , increased cholesterol levels .
So be sure that you talk to your doctor about all the risks involved and decide together what is going to work well for you . And , of course , well , we're always here for you . That's why we are your Spoonie Sisters and we are a community , because we want to support you and never have you feel lost and confused through your journey .
So if you're new into this little realm of our land , welcome to the club . You don't want to join , but we're here for you . Until next time , don't forget your spoon .