What do you wish you’d asked at your first rheumatology appointment?

[PurpleGeck]

Hello and season greetings to all! I’ve been lurking, reading, and learning here for a couple of weeks and am now jumping in with my first post!

On Thursday, I have my first referral appointment with the rheumatology department, with suspected early RA.

After presenting to my GP with stiffness and tingling in my hands, she ordered floods tests and hand X-rays. All of these blood tests which included a full blood test, diabetes, and ESR were ‘normal’ but the X-ray showed the results ‘could be consistent with early RA so she requested a referral and sent me for more blood tests - CCP antibody and serum ANA pattern. The serum ANA result says ‘normal’, whilst the CCP antibody has come back as positive.

I may be jumping the gun but based on what I’ve read (Googling is not always a good habit!), I won’t be surprised if the diagnosis is early RA.

So, my main questions are: what can I expect from this first appointment and what questions should I be asking?

I’ve written a few notes down, like any possible symptoms I’ve been getting and questions about patterns of treatment - this is my primary worry as I travel a lot. But are there any specific questions, that with the benefit of hindsight, you wished you’d asked or pressed harder on in those initial stages?

A friend said, don’t automatically accept the first set of meds that are suggested (particularly in relation to methotrexate because of the possible side effects), but I have no idea how to question something like this and am inclined to feel I have to trust that doctor knows best.

Many thanks, and I appreciate any feedback at what I appreciate is a crazy time for many of you!

[helixhelix]

Good question! Probably "can I book my next appointment now before I leave the hospital"....rather than waiting for it to appear in the post.

If you put 'first appointment' in the search box top right and select this community you'll get previous posts. Plus there might be some to the right of your post under 'related posts'.

Don't believe everything you hear about methotrexate - yes some people have problems with it, but for the majority of people it's a great drug. It's my best friend and has been for 8 years. And I wouldn't be without it.

Rather than prepare yourself to reject what is offered, maybe think of questions to ask. So if methotrexate is proposed, perhaps double check by asking doctor if he/she really believes your symptoms warrent this. If it is one of the milder drugs like hydroxy, then ask whether this will be sufficient to control your disease. If your are of childbearing age then this is also an area to discuss re the drugs.

But don't be surprised if hearing a doctor say you have RA really rocks you. Thinking it might happen is different from actually having it confirmed.

When I was first diagnosed I was travelling a lot, and it wasn't a problem at all. I had to be a bit organised about my diary, initially not scheduling big trips on methotrexate days, and make sure I planned blood tests well in advance. But it quickly becomes routine.

[PurpleGeck in reply to helixhelix]

Thank you, for your suggestions and reassurance.

You’re right about the meds - I definitely need to focus less on a “I don’t want to take that” mindset and more on potential benefits (which could outweigh the negatives). I’m 49, so at least childbearing doesn’t have to factor in with the drugs.

Good to hear that I shouldn’t have to give up travelling, which is basically my life!

[PurpleGeck]

Lol! Oh, dear... I hope that's not a question I'll be wanting to ask straight away!

[Notabenenot]

Another one here to say don't write off metho. I have never had any nasty side effects from it, everyone s different. I do sometimes wonder whether the drugs I take daily actually have any effect. When you have to leave off taking them pre-surgery or because of a dodgy blood test, you soon find out. The pain and damage soon tell you! Good luck with your appointment, I hope the clinic find out whether it is RA or not and have the best Christmas you can.

[PurpleGeck in reply to Notabenenot]

Thank you. I agree I need to be open-minded and pragmatic about treatment. Trying not to play out too many scenarios ahead of my appointment - hopefully I’ll know soon enough. Christmas wishes to you too.

[Bojedo]

One of the things my rheumatologist did was type out his directions for the medications. It seemed silly at the time for him to be taking the time, since I was listening intently, and I was pretty sure I would not forget. Plus it is all going to be on the pharmacy bottle, right?

Nope, the pharmacy directions were a mess. I was to start with 4 pills of the methotrexate a week and gradually increase to 8 pills a week. The pill bottle read 8 pills weekly, so my hubby almost over medicated me by twice the amount on my initial dose of MTX. My prednisone dosages were so confusing, since I initially had what the gp started me on, then what the rheumatologist was changing it to, again this was not on the pill bottle.

I have referred to these printed directions a few times, because what I understood and what my husband understood as time has progressed has changed! I will not even share the folic acid debacle.... 😅

So, I would strongly advise you to make sure you and your rheumatologist understand your meds in written form. Just so you know, I am in the US, so perhaps the other countries do meds differently.