Am I missing something?

Hi guys this is my first post so bare with me if I ramble abit!

Basically I've had probs with my back knee for years however this time last year I put my back out at work and I neva been the same since. By March my hands were swelling knees & feet. I was signed off work and put on strong painkillers. I was finally diagnosed with RA in August and am on 25mg prednisone a day and 10mg Methotrexate and 5mg folic acid a week. I was hoping to finally go back to work after 9 months off this week when my current fitness for work certificate ends, but I'm feeling so tired and have more inflammation than ever b4! My ankles toes and balls off feet shoulders elbows wrist and knuckles all have decided to swell as for my hip it feels determined to escape my body when ever I try to move!!!!

I just want to feel like me again- I feel 74 instead of 47! I have an autistic 11 year old & a recently widowed 87 year-old father with dementia to look after and I can just about look after myself. My old man and two older kids try to help but they don't get how painful and exhausting everything is so I just try to get on with things.

Anywho my question is how long till meds start working I've been on them since October and I also take Naproxen & co-caramel daily (not that they help) I also have high blood pressure and depression so take about 10 additional meds to my my RA meds!.

My last blood test on 15Dec still showed high inflammation: CRP 18, ESR 37, Platelets 168. I'm not due to see my consultant again till 27 February

Sorry for long post but don't no where else to turn x

9 Replies

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  • Hi. I would get in touch with your rheumatology department & let them know you have no improvement. When did you last have blood test? If there is no drop in your esr/crp this could also suggest a medication review is needed. When I was on methotrexate they increased it. From memory it's about 8 weeks for medication to work (though I could be wrong as I've lost count of the medications I've tried).

    I am too off work at minute with the pain & fatigue. My consultant confirmed my latest medication is ineffective. I know it can be frustrating when you are wanting something to work but keep going back to rheumatology & telling them of your difficulties. Hope you find an answer soon. Regards

  • My last blood test was 15 Dec. And my CPR rates seem to be increasing. I left a msg on my reumy answer service as requesting an earlier review as sometimes it's just all to overwhelming.

    Without this site showing others experience similar things I would think I was going mad as its hard to believe RA can cause so much symptoms.

  • I've found problems contacting my rheumatology nurse too. It's so frustrating when they don't ring back. I just keep leaving messages. keep phoning. I've left 2 messages this week. They will get sick of me!

  • Hi PauliP - sorry you are having such an awful time with your RA on top of everything else that is going on for you. The main thing is to get in touch with your rheumy team if you can and hopefully get a review sooner rather than later. I was put on MTX after about 10 months of rollercoaster polyarthritis pain and struggle - it finally settled in my knuckles, fingers and wrists when I was diagnosed with sero negative RA. It took 6 months for the MTX to work and even then my ESR regularly soared and I had the odd flare up.

    The main difference came when I was switched to injections and had Hydroxichloraquine added in - then things started to settle and it's never come back in this painful and debilitating form again since - although sadly I've had to quit DMARDs because of intollerences.

    My son is a young adult of 22 (heading for 23 now) and I'm 51 but he has Asperger's and I know how tiring it is to have to care for anyone with an autistic spectrum disorder. However he's doing brilliantly now so hopefully all the hard work you put in will pay off in the long run.

    Keep coming on here - it will help make you feel less isolated and give you somewhere to vent and get support when you need to. It's also really good to be able to give support when things are better so hopefully you will be in my shoes one day and be able to look back on it all from a happier position once your RA is properly controlled. Hang in there!

    Twitchy

  • Welcome to us here PaulieP & in answer to your post title, in my opinion yes! The opinion of your Rheumy! You should have seen an improvement in 3 months, assuming it wasn't the end of Oct you started on your meds. It may be that they need a little juggling, possibly an increase in MTX & folic acid. I say both as the MTX would hopefully address your immune system overworking & folic acid to help replace lost folate, & hopefully help with your fatigue, especially if you're a tad anemic. As you continue to have inflammation it is possible that naproxen isn't the better NSAID for you either or the dose isn't sufficient (it does little for me) & as you're taking 25mg steroid I would have thought that should be having an effect. Basically, I agree with what Rachel & Twitchy have already said & you need to see your Rheumy or at least speak with your nurse if you've been allocated one. Four months is not excessive to wait to see your Rheumy again but taking into account you're newly diagnosed & not showing great improvement I think I'd be wanting to see him sooner.

    Do bear in mind you have quite a lot on your plate but don't forget about you, especially at this early stage of trying to get your disease under control. You need to give your meds chance to work & that means listening to your body not overdoing things, not pushing it & resting when it tells you to. Not easy I know under the circumstances but if there is someone you could offload some of your responsibilities on that would help, a lot!

    I hope you enjoy using the site. We're here if you need any help, our experiences or suggestions, whenever, there's usually someone who'll relate to you or how you're feeling! :)

  • Like others here, I think you need to start pushing your rheumy dept to get a review. And maybe also ask your GP to push too. It seems very unfortunate to me that you've been started on MTX without a follow up appointment in place as 10mg is usually a starter dose and you often increase slowly. I had to go up to 20mg before it had any effect (in 2.5mg steps every 6 weeks or so, so took forever) .

    Plus, quite frankly, forget about trying to get back to work right now and ask your GP. to extend you. You do really need to look after yourself until you have this thing under control. It's hard I know, but something has to give and better your work than your family or your health. Just to give you some hope, it took me around a year to find the combination of meds that really worked. But once it did there's been no looking back and I'm virtually "normal" again.

  • I'm still waiting for a reply from the msgs I left at hospital. I haven't got a named nurse is this something I should be ask for? I last saw a registrar and medications review nurse in December when I had last blood test. I had a consultant appointment booked for this Friday but this has been cancelled until 27 February don't ask me why!

    I'm going to try get my GP to give another certificate as I'm prob being unrealistic about work. It's just on my rare 'good day's I do miss the feeling useful and the social aspects of working.

    Anywho I'm so glad I discovered u guys. I've been silently reading your post & gaining some insight into this much misunderstood disease of ours.

    So thanks to you all for helping me not feel like all these symptoms are in my head and they are in fact linked!

    Thanks again, a slightly less fed up Paulieladyp x

  • Hi Paulie, I'm new both to the forums and to RA. I got diagnosed just before my 45th birthday this year. I'm on lots of other meds, too, but still so new to these ones that I don't think I can answer those questions, but when this diagnosis came in I finally had to sit down with my family and explain with complete honesty how it feels to live in my skin right now. It sounds like you have way too much on your plate to even begin to heal. I have a license for medical marijuana (edibles, not smoke) and that has helped enormously with the pain, but the truth for me is that I simply cannot do all the stuff I used to. Not won't, not don't want to, but cannot. This isn't your fault or failing, this disease just sucks hot rocks.

  • Hi PaulieP

    Sorry to hear that you're having a bad time with your RA and that you're still waiting for the hospital to call you back. If you need any advice or would like to speak to our Helpline team in the meantime, do give them a ring on free phone 0800 298 7650 (9.30am to 4.30pm) or email helpline@nras.org.uk

    I do hope things improve for you very soon.

    Kind regards

    Emma-NRAS

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