Rheumatoid arthritis

[plymouthmaid]

Hi All,
I’ve just had a diagnosis of rheumatoid arthritis. I was just wondering if anybody had any experience, that they could share, or tips to help managing the condition. Thanks.

Hi, DH has it and we are also under Derriford's care (assuming from your username). Happy to chat if you want to pm me. X

Posted twice

Following as I have an upcoming appointment at the arthritis clinic for suspected RA. I'm really nervous about what it might mean re meds, lifestyle, etc. So would be good to hear from others.

How are you feeling about your diagnosis, OP?

Thank you! Definitely a Janner, but have relocated. I’m not sure how to pm, but would be good to hear from somebody with experience. Very grateful.

I was diagnosed (edit) over 20 years ago but had it much before. I’m not around much today but can answer any questions you have later. Main point if the drug doesn’t work don’t be fobbed off (methotrexate looking at you!).

Methotrexate and another disease modifying drug was offered, diagnosed 3 yrs ago, main thing is to observe triggers, for me sugar and fat, look at diet. You can a biologic treatment if the methotrexate doesn't work

I’m on methotrexate (and have steroids as a bridge) Currently feeling dreadful! The diagnosis was totally out of the blue. Very rapid onset and sent to the hospital (on the day) by my gp. I’m feeling very confused as I’ve had no real information. Like you, I’m worried about what happens in the future.
How are you feeling, Gabbycat?

I have had it for 30 years. Well-controlled with drugs for the vast majority of that time, and, apart from my hands, no visible effects (but they work OK). I'm happy to answer specific questions if you pm me.

I have had RA for around 30 years, I’m now in my mid 60’s. I have had 2 knee replacements and my hands are fairly deformed. But, I have lived with the disease for so long and have adapted well.

The medication is marvellous now and slows progression down. Many people wouldn’t know I have RA despite my hands and I can honestly say it has not stopped me doing things I want to do. I can’t run a marathon, but then I wouldn’t want to!

I hate it when I have bad flare ups and need steroids (they are a wonder drug) due to their side effects. But that does not happen very often now.

Please don’t worry, it’s not as bad as you think - stay positive and read up as much as you can.

If they would help you, don't reject using a cane or even a mobility scooter - you wouldn't refuse to wear glasses/contacts if you couldn't see, or a coat in the rain and if you start to struggle to stand for long periods then mobility aids can be the difference between carrying on with pretty much your normal life or having your horizons limited.
One of those plastic stools that collapses into a disc that looks a bit like a giant button, on a strap, and then pulls out and locks when you need it is also good (and get a shower stool to sit on while your wash your hair and your legs if you feel unsteady, your joints will hurt a lot more if you fall over and crack them against an edge in your bathroom).

I also had very rapid onset but steroids halted that - for the first four years or so I had big flares that would put me out of action, combined with ongoing fatigue, but ten years on I just take one hydroxychloroquine a day and am largely recovered (if I miss a tablet I immediately get a small flare and I'm never going to be a runner, but I no longer need any aids and can be on my feet all day moving things around and just be stiff at the end rather than requiring bedrest for a week). So it can get better!

I have RA, was diagnosed in 2017. I’ve had a rough ride with it, as Methotrexate on its own wasn’t enough. I had various biologics, Adalimumab and Baricitinib, which didn’t work and now have a 6 monthly infusion of Rituximab at the hospital. I still take the Methotrexate too at 25mg weekly.

Rituximab has really been a help. I still get flare ups, but not as regularly as I did. The only time they get bad is when I’m coming up to the next infusion. I do have to take painkillers daily.

To be honest, it’s something that you do learn to live with. I do find it frustrating at times, as there are certain things I am not able to open with my hands. I do sometimes drop and break things, but I make a joke out of that, especially as we’ve probably had two new sets of wine glasses and a complete new set of dinner plates. 😁

This is all so helpful. My consultant made it sound as if the methotrexate would prevent any further issues, which was contrary to everything I’d read!

Be prepared for MTX side effects. I was on it for 5 years along with hydroxychloroquine, steroids, and it just never really got under control.

I’m now on leflunomide and hydroxychloroquine and I’m a different person.

I still use a stick occasionally (great for getting a seat on the tube 😁), as I can’t manage long distances without assistance. But I still walk the dog most days.

And most importantly if I need a sofa/bed day, I don’t push it.

I’ve also cut out gluten as that was a trigger for me.

Tbh you just get used to your new normal. But bear in mind, that once on immunosuppressants you may catch more viruses than before.

any questions please do ask me.

Good luck 💐

These are so helpful and more what I was expecting rather than the sunshine and roses scenario my consultant painted!

Hi @plymouthmaid , hope you are doing ok.
You mentioned rapid onset and I wondered if you wouldn’t mind sharing how this first presented? Many thanks

Hi @Wemdubz,it started with a headache which spread to my ear, jaw and neck, all on the left side. Then had pain in my wrists which felt like I’d bruised them. This then spread rapidly and I couldn’t use my arms or hands at all and was in extreme pain. It was all very odd!

Thank you for sharing; glad you got a quick diagnosis and I hope it can be well managed.
I think I am experiencing osteoarthritis (knew I already had this mildly in my foot) but I have rapidly worsening pain in my thumb joints and hips along with extreme fatigue. I don’t think it is rheumatoid but was interested to see how it might initially present.

Hello! I was diagnosed just this week. I’m already on methotrexate, folic acid and Vit D (massive dose, I was intending to avoid prescription charge but it’s so much stronger than anything otc) and have had a steroid injection.
Trivial question- there was a sticker on the methotrexate saying to avoid sun and more advice to do so in the notes. Do people do that? I’m very active, swim daily in the summer and I’d hate to do so. I’ll avoid sun until I get a chance to talk to gp and consultant but hoped/ wondered whether it was one of those blanket advisories.

You do need to be careful about UV light on methotrexate - it is a bit weird in that you don't get sunburned more easily, it kind of reactivates any previous sunburns so you get to have them again! Methotrexate Sun Sensitivity: The Complete Protection Guide | GB

You might want to consider a UV-protective rash vest and leggings!

My mum’s had it for years. She recognises which foods and drink caused flare ups so cuts them out (now teetotal) and has a very clean diet. Plus daily walks.

My DM is on methotraxate too and takes calcium supplements, iron (floradix) and vit D amongst others.

DM also had one knee replacement and broke her left femur last year.

@randoname When you say you swim in the summer, is that outdoors? And when you say you are active, does that involve spending time in the great outdoors? Reason I ask is that it is possible - goes for others too but your post stood out to me - that it may be lymes caused by a tick bite.
I was diagnosed with RA but it turned out to be lymes. There's some easy ways to tell - which joints are affected, if it only affects one side of your body, if the extreme pain moves from joint to joint - but that doesn't show up in blood tests which is how I was diagnosed. Just in case it helps anyone.

Edited to say @plymouthmaid you tick a lot of boxes for lymes too. Might be worth investigating.

I will definitely investigate this- I’ve removed ticks from dog, however it flared/ first manifested in January so probably not. But thank you for the suggestion.
Yes to swimming outdoors daily, pic is my back yard.
Sadly scrolling through uv swimwear.