What to try next?

RavenHairedPixie

Hey everyone!

I have RA and have been injecting 25mg of methotrexate. The only thing that seems to actually make me feeling better is taking steroids… which I’m not currently doing and is not a long term solution. My rheumatology advice line are not great, so that’s why I’m here.

I am now happy to try anything. Give me your weird and wonderful solutions that have helped you.

I can’t continue in the pain I’m in but also can’t get any help with prescription medication so I need your advice.

thanks!

jamieA

Hi @RavenHairedPixie

I was in the same boat last year. I was diagnosed with psoriatic arthritis in October 2020. Sulfasalazine didn't work, then 20mg MTX didn't work and my only respite from the severe pain was from almost monthly Kenalog steroid injections. A different rheumatologist saw me when I was admitted to hospital last March and said that if I were his patient I'd be on biologics sooner rather than later. However I saw my own rheumatologist a week later and he said he wasn't listening to 'some doctor I saw'. I wrote a detailed letter to him listing, in chronical order, what had occurred in the time since I'd been diagnosed and his responses and finished it by stating if he wasn't prepared to help me then to refer me to another rheumatologist. I handed it to one of his staff at my next appointment and he immediately came to the treatment room to see me. I was put onto biologics the following month.

I was aware that the letter would have to be logged and put on file whereas verbal communication can either be misconstrued or ignored.

The biologic I'm on - Amgevita - is working, I haven't been admitted to hospital with PsA symptoms since.

stickywicket

I don't think you'll get much better advice than @jamieA 's. Not that amgevita is definitely the right med for you but that you have to go through rheumatology and his way seems a very reasonable one if the rheumatologist isn't listening.

There are no 'weird and wonderful' solutions to RA, only DMARDS and biologics.

But it's possible you'll still be in pain even when the meds are working. Damage done is damage done and, for some of us, enough damage was done to lead to OA before Dmards were sorted. Firstly, find out what your regular blood tests say about your inflammation levels. If they're high you need the meds tweaking. If the inflammation is under control it might be worth asking for an x-ray to see if there's any OA there.

jamieA

Hi @RavenHairedPixie

I think @stickywicket is absolutely correct. I should have said that although the Amgevita is working I've still got a level of pain - but it's nowhere near what it was this time last year. The rheumatology nurse said I was lucky that the first they tried worked - I think she said there were 7 biosimilars they would have worked through. However I've now been diagnosed with OA in several joints.

BettyMac

Hi

I’m another one who struggled along for a few years on methotrexate and steroids. I had lots of inflammation, pain and loss of function. It wasn’t sustainable.

Luckily for me, a biologic worked first time and was transformational. I really feel like I got my life back!

Biologics are expensive drugs and don’t come without their own side effects. A rheumatologist has to make a strong case that they should be prescribed.

I kept a diary of symptoms - which joints playing up, pain, lack of sleep etc.

I printed it off, highlighted the worst bits in bright pink and took it along to my appointment with the rheumatologist. They don’t have the time to examine such documents in detail but the amount of pink highlighter made a pretty convincing case that MTX on its own wasn’t controlling my disease.

In other words - don’t just tell them, show them.

It’s difficult when one is coping with pain and inflammation - it always made me brain-foggy - but if you can work out in advance what you want from a review appointment and be quite organised in writing down the issues you need to discuss, you’re more likely to come away feeling better about things.

I hope you get some resolution soon. Good luck!

Aquariussonia63

I've just seen a rheumatologist and will be starting biologics soon.i tried prednisone Metheotrexate hydrology chloroquine. Really hoping the biologics work

Bella59

Hopefully you will be lucky and new med will work for you soon.Any idea what biological you are going to start?