Hello!

[Mandy8175]

My name is Mandy, and I was diagnosed in 1987 at the age of 12. I also have fibromyalgia.

I was never educated by my parents, or put in a treat to target plan. I am now 42 with a heap of inflammation related illnesses.

I am currently on sulfasalazine and methotrexate. I see a pain clinic for my prescription opioids.

[Eiram50]

Hi Mandy

And welcome. Wow, that sounds like it must've been some journey for you being diagnosed so young. And without any education around this, it must've been very difficult to make sense of and to manage the condition.

How are you faring now?

Hoping that you've been supported better in later years.

You've found a great group here and a place where you will be supported to express any concerns and questions with good people always willing to support and advise.

Hope to hear more from you over time.

Marie

[Mandy8175 in reply to Eiram50]

My fiance is the only support even now my mom and siblings swear that I'm crazy. They are all healthy, and I have always been sick. I just keep trudging along, and deal with each day as it comes.

[helixhelix]

Eiram's said it all, so welcome....

[dwsurquhart]

Hello Mandy,

Welcome to the group.

How long have you been on the mtx and sulfa?

The reason I ask this is because if they are not working after a period of time to bring down your inflammation, speak to youe doctor about a biologic. Although I am not a fan of any of these drugs, I am on a biologic.

If you were diagnosed at 12, was the diagnosis JIA? If so, speak with the Dr about Anakinra (Kineret) and or Actemra (Tocilizumab) . They were both designed for treating JIA and Adult Onset Still's disease. They also work with RA in general.

I have been diagnosed with Adult Onset Still's disease and sero negative inflammatory polyarthropathy.

The Actemra has been a god send for me. The damage had already been done in my joints but I am feeling quite a bit better as a result of the med. My inflammation went from a staggering 159 down to below 0.2 after starting the Actemra.

Hope this helps you in your RA journey.

Cheers

Scott

[Mandy8175 in reply to dwsurquhart]

Thanks! My inflammation was 261 last time that's when I got the mtx. So 6 months on sulfa and two weeks on mtx. I have no idea what my initial diagnosis was, my mom never talked about it. It was basically ignored until adulthood when I started to figure it out.

[ruth_p]

Hello and welcome! I was diagnosed with JIA at 14, I'm 36 now. I'm on tocilizumab and methotrexate.

[dwsurquhart]

Hello Mandy,

How often do you get your bloodwork done? My doctor has me on a 4 week cycle so I end up going every 3 weeks.

It gives me a sense of calm knowing what my bloodwork is doing before I see my specialist. It also give me time to draft some pertinent questions before the appointment as well.

I have found that the more information I have going into an appointment, the better the appointment goes and the more I learn.

Hope this help for you.

Scott

[Mandy8175 in reply to dwsurquhart]

I am every 6 weeks, but will be back sooner this time. I am having a liver related side effect and waiting for my Rheumatologist to call back.