Frustrated by zero results

Well I am so sorry for the fact that it took you all these years to get diagnosed. For what it’s worth I was sero negative for 7 years after being diagnosed. I’m sero positive now.

But most insurance companies, including Medicare, essentially require what they call a “step up” medication strategy. They want you to try all the drugs you list - sequentially. Only when that doesn’t work will they let your doc try biologics. Start by telling your doc that it’s not his fault but you have been chasing relief for decades and why you aren’t trying the biologics like Humira or Enbrel. Or something more likely to produce results?? You want him to want to fight for you with them.

Do you have any visible joint damage?

Thanks so much for your reply. I hope the doctor will try something else soon. I'm on 15mg of methotrexate now. I may have about 20% less swelling in my fingers, but my feet seem to be worse, and my left knee and right shoulder are sore. I have visible joint damage in all fingers and feet. My left index finger has been twisted for several years and some middle knuckles are collapsed.
I'll be on Medicare in August.
I hope they don't make me start at square one before allowing a different medication. I can handle the pain pretty well with CBD oil, but the stiffness is bothersome. I also have erosive osteoarthritis in every single joint closest to the fingernails and osteoarthritis in my spine and base of my thumbs. They say there's nothing that will help those. It is frustrating that I'm no better off than before diagnosis and now I have nausea and fatigue from the medication.

The good news is I think you’re at the end of the step up drugs. Are you on folic acid with the methotrexate? What’s your dosage?

Yes. I was prescribed folate 1 mg daily. I did some extra googling and decided to take some folinic acid 10mg the day before and the day after the methotrexate to see what happens. It's supposed to be more potent. This is my first week trying it. I split the MTX dose into 3 Wednesday night and 3 Thursday morning. I was pretty nauseated this morning, but hopefully better soon.

15 mg -how often? Pills or injected? Doesn’t matter - I’ve done both so just curious.

You need an RA with guts to tell insurance, including Medicare - that you already have joint damage because you were not diagnosed and not properly medicated for decades. And that certainly there will be more if you don’t get on biologics.

What part of the country are you in. I have lived in a lot of them and may be able to recommend one.

And yea a lot of us have RA also have osteo. Sux.

I'm on weekly MTX pills. I take 3 Wednesday nights and 3 Thursday mornings.
I'm living in Greensboro, NC. My rheumatologist is supposed to be very good. I like how he takes time and explains things. My next appointment is in 2 weeks. I will ask him about the next step. I'm also going to ask for some prednisone to take for a couple weeks because I am flying out west and will be doing a road trip down the Washington/Oregon coast. Lots of walking and sitting, so I'd like a little relief if possible. I'm allergic to NSAIDs and even Tylenol 🙄

Small world. I live in east Greensboro. I have a Whitsett address but am in Guilford county.

My Rheumy is on Huffman Mill Rd at Kernodle Clinic adjacent to Alamance Regional hospital - He is affiliated with Duke tho some in other disciplines in the clinic are affiliated with Cone. .

Well if he doesn’t get you to relief that doesn’t require Prednisone routinely let me know. I had mine previously when he was in Winston Salem and I was north of there. It was just coincidence we both moved to this area and I’m very happy it worked out

Let me know if you want to bounce something around.. good luck!

Wow, it is a small world! My doctor is at Greensboro Medical Associates on Westover.
I'll definitely get more info from you if I decide to change. I appreciate your input very much. 😊

Let’s stay in touch.

I love this supportive community!
Hoping the best for both of you❤️