Hello,

My name is Louise & I was diagnosed with RA about 6 weeks ago. I'm 39, married with 2 children aged 8 & 6. I'm currently taking a combination of methotrexate, frolic acid & steroids & the treatment so far seems to be agreeing with me

I've gone from 9 months ago cycling to work each day to just being able to walk down the road My goal is to be able to get back on my bike but at the moment I'm just getting my RA under control. I have a very supported husband & loving family around me.

I was recommended to join this side so hope to chat to you all and hear your stories. Louise

Hi Lisamcb,

Yes we do sound as if we have very similar stories. I wasn't sure what I was going to be diagnosed with to be honest but since being diagnosed have felt as if a huge weight has been lifted of my shoulders & I can finally move forward. I've been told I have a really positive attitude & this I feel is my way of coping. I do not think I realised before being diagonosed how rock bottom I had got justifying & not doing things as I knew I couldn't but didn't want to say

We too love walking in the hills and are next year planning to get back into it, small hills or just walks to begin with but I do really feel our quality family time has come back now.

Nice to chat to you, Louise

Hi Lisa and Louisa - welcome to you both. Attitude is a big part of coping with RA, and you both sound like you have bags of the right attitude! I'm Sylvia, and am 55 with 4 teenage kids. I was diagnosed May 2012 - I'd got really bad as it took months and months to get a diagnosis and I kept getting referrals and treatment for the wrong stuff - so when I finally saw the rheumatologist and she confirmed that RA is treatable and she could help me feel better really fast, I too felt like a massive weight had been lifted - I cried with relief at being listened to and understood. Anyway, here I am almost 12 months later and I'm feeling really well. My RA is in remission, I've started a new job and am fully enjoying my life again.

There is light at the end of the tunnel.

It's great that you've been doing well on the basic treatment of DMARD (MTX) and steroid - that is an excellent start. Your rheumy will probably add in another DMARD - for example hydroxychloroquin HDX - and it does take several months for the meds to take their full effect, so hang in there if you have down days. In my experience, it took a few months to stabilise and then the fatigue got considerably less, and with a few adjustments life is pretty much as before.

Very best wishes - do try to rest as much as you can - not easy with a family - it does help!

Cheers - Sylvia

Hi Louise - glad you're responding well to the meds - hopefully it will steadily improve from now on! My hand specialist is the occupational therapist - is that the same for you? Mine is really good too - she listens and treats me as a whole person with a life beyond this illness, and that's really important

Your story is desperately familiar - clearly GPs just don't have a clue when it comes to putting all the little pieces together - it's really knocked my confidence in doctors generally. Having said that, it's made me realise that as a patient I have a responsibility to become better informed and take control of my health - that's something I just took for granted in the past, so it's not all bad!

It's quiet on here today - probably Easter - but you'll hear lots of similar stories, so whenever you have a new thing to deal with just ask, and someone is bound to have had similar experience. We're not medically qualified of course, but it's amazing how much knowledge the people here have, and they are all so kind and caring.

I usually get on about once a week now I'm back at work. When I was first diagnosed, I came here daily for a shot of sanity and friendship - but I wasn't working then so I had a bit more time. I think you said you're on steroids - they make a huge improvement really quickly, but you can't stay on them for long as they have unpleasant side effects in the long term (bone thinning for instance) - so while you're enjoying the benefits don't go thinking you'll start decorating or take up mountaineering!! (just joking)- take the opportunity to get extra rest time. I used to go to bed for 2 hours every afternoon and have a proper sleep - I really did need it, as the fatigue was very real. We all find that pacing yourself is key to getting better and then staying well.

Are you having regular blood tests? I started with weekly, then it reduced to fornightly and now it's monthly and totally routine now. Keep a record of your results and you'll soon start to understand how the numbers look for you - we'll all slightly different, but if you have any questions then ask your rheumy nurse.

Very best wishes - Sylvia