I have just been diagnosed with seronegative rheumatoid arthritis. Anyone else?

[Trainnner]

I got my diagnosis this week and I am due to start methotrexate in a few days (I have decided on Sunday). I am terrified and devastated.

I am generally “well”, but have had swollen joints, eye styes, mouth ulcers and chillblains for a year.

I feel gutted that this is it for life now.

And the more I read about methotrexate, the more frightened I get.

Anyone else have this? How is life?

I’m sorry you are going through this, it will get better but it’s very important that you realise that not everything will work for you immediately, treatment can be slow but you will get there.

Seronegative means that no RA markers are present in your blood but it is still RA!

You will also be prescribed Folic acid 5mg, which you take every day except for the Mtx day. This helps with the mouth ulcers.

Mtx is a DMARD, it modifies the RA, there are a few different ones if Mtx doesn’t work but it takes a while to find this out. If no DMARDs work then you can be prescribed Biologic medicine. When you find the right one, it’s magical.

You will find that you are tired, in pain and sometimes feel sick at the beginning of treatment but it does get better and it’s worth it to get your life back.

It’s not an easy journey for some but you stand a good chance of doing well on Mtx and the RA team are there to help you, and give advice and medication.

The website Versus Arthritis has a lot of information and support.

Here’s the website

https://www.arthritis-uk.org

I was diagnosed with RA 13 years ago this year and also have osteoarthritis. From the start I was on methotrexate tablets I now have Metoject which is an injection. I take the folic acid everyday except injection day which helps. I took it once a week when I first started the tablets and would get ulcers and feel sick, I don’t really get any side effects from the Metoject now.

I was diagnosed 6 years ago with seronegative RA and remember all of the anxiety around this being it forever. I was 37.
I started methotrexate tablets, I took 6 a week I think to start with - they’re small and fiddly and known to flick across my kitchen! I tolerated them well for a couple of years but I caught Covid and they made me feel sick afterwards and it was wiping out almost every weekend (my MTX day was Saturday then) so they switched me to injections. I hate injecting myself but I don’t have side effects.
I haven’t actually had an RA review for almost 2 years and my last 2 were over the phone and my disease level is currently classed as in remission (which is brilliant but not as it sounds - I still have pain and my hand strength is awful and I’m still taking the same level of medication.

Life for me is ok. I was worried when diagnosed as my children were young (1 and 3) and I was worried about my immune system with nursery/school bugs but I haven’t been overly affected and my children have been through chicken pox/covid/shingles/scarlet fever and lots of tonsillitis and colds and I haven’t been badly affected. I’ve had my knees drained twice but even when they were very swollen and painful, I could move more easily than before my diagnosis.

Be prepared for people to offer advice - especially about supplements. Turmeric is the magic cure apparently!

Happy to help if I can.

Thank you everyone! It helps to hear stories. I feel quite overwhelmed at the idea of medication for life. And I’m nervous to even start. I have been prescribed folic acid once a week, but have been googling and people recommend every day except methotrexate day - is that better for side effects? I am dreading them.

The rheumatologist said we’d reassess the medication periodically and that I might not be on this one for life, but I think she was trying not to overwhelm me!

Have your joints gotten worse since your diagnosis? I have knee pain, but nothing else. I was hoping it would get worse if the medication worked! She told me I’d be back in yoga classes etc and having a normal life. I don’t know how real that is!

I’m also wondering how long it took to be in remission and whether - when you are - it means you can ever come off the medication?

There's a thread on "auto-immune" illnesses which might help.
I've had RA for 10 years. I was on a drug called hydroxychloroqine which worked really well for five years, then they added sulphasalazine. I had to start mtx 4 months ago.
I tried the tablets at first but had terrible stomach problems and switched to injections.
The good news is it worked really well really quickly for me. I had forgotten what it was like to be free of pain and fatigue.
The harder part was side effects.
Different areas of the UK have different protocols for folic acid. Some give 1 tablet a week but most give it 6 days a week.
I found the folic acid gave me nausea but if I didn't take enough I got headaches. It's been 4 months of experimenting to get the balance right.
Don't be afraid to ring the rheumatology helpline if you have any problems.

My partner has RA (also had no markers so they based it on his response to steroid and X-rays).
He’s now on biologics plus a few other things as his was quite aggressive. 5 years on after a complete lifestyle change he functions quite well for an older fella.

Still gets the odd short term flare and has an underwhelming immune response to colds (so they go on for longer).

The hardest thing about the methotrexate is getting it out of the blister pack. Is it just me that always wonders who designs these things?
Look after yourself and keep an eye on things like fungal nail infections as they tend to hang around and get manky without proper treatment.

My partner was told his was in remission and he was allowed to drop sulfazalazine and reduce his methotrexate to 6 per week. It’s all done very slowly, so they usually space things at 6-9 months. All I can say is we are bloody lucky to have all this on the NHS!

Haha yes! I took it last night for the first time and it is very hard to get out of the blister pack!

I agree. I went to a few Reddit boards about it and there are a lot of posts by Americans who are struggling to afford to pay for it all.

I don't find Reddit too helpful because it's primarily American and they seem to either over treat, because insurance pays or they struggle to get drugs. OTOH they seem to be able to just call up their rheumatologist at will.
I have heard of people going into remission and off medication but I think primarily it's a lifelong condition.
I got dreadful nausea and heartburn from the tablets but they swapped me to injections quickly. The injection is a pen.

My symptoms have gone completely since starting mtx but as pp said you are vulnerable to infection and take longer to recover. I also find cuts and spots don't heal well.