Advice on your experience of what improvement from medication looks like

Spuggy

Hi, I'd be really grateful if anyone could share their experience with me of what improvement from medication looks like. I was diagnosed over a year ago with Rheumatoid arthritis and have since been prescribed 3 different kinds of medication: two DMARDS, discontinued thanks to bad side effects, then a biologic (adalimumab) which seemed to have no effect on me whatsoever, and now a JAK inhibitor (upadacitinib), which I've been taking for five weeks. My rheumy suggested that JAK inhibitors are great because they tend to work within eight weeks. I can't tell whether they are working for me or not. There may be some reduction of inflammation in my upper body, but nothing at all in my feet, ankles, knees. My RA symptoms started in my lower body and moved to my upper body later on, and I wondered if I could expect to see the reverse of this as medication started to work - indeed, if I am already slowly seeing the reverse of this, with improvement in the upper body now, and improvement in the lower body to follow. But I'm frankly desperate to find medication that works at this point and get something like my normal life back. My rheumy says it's too early to say whether the new meds are working, but I am really in need of some hope here! I hope that the community might have some experiences that would give me that.

jamieA

Hi @Spuggy

I think the problem is everyone is different. In my case - I have psoriatic arthritis - I was initially put on sulfasalazine, then 4 months later methotrexate was added. Five months after that a biologic - adalimumab - was added and two months after this I had improved significantly. So I take 3 drugs - my rheumatologist says that the 3 together work better than each individually. It's called synergistic. So just over a year after my first visit to hospital regarding my joints swelling I had a significant improvement. In 2022 my rheumatologist asked if I were to regard my worst times as a 10 what would I regard my improvement 18 months on and I replied either 1 or 2.

However I met a couple of other inflammatory arthritis sufferers at the Nuffield Health joint pain course who had tried multiple biologics. My rheumatology nurse told me I was lucky the first biologic worked - she had 7 to chose from!

I hope you get a medication that works soon.

Spuggy

Thank you so much - I really appreciate the kindness of sharing your experience with me. The nurses have been very clear from the start that not every medication works for everyone, that the immune system can take a while to respond to meds, and that they have lots and lots of meds to try (alas, I had bad reactions to both MTX and sulfa so I don't think a combination with these would be an option for me). I guess I just have to be patient for as long as it takes, but it's great to hear that you got to 1 or 2 in terms of improvement. Many thanks once again.