8 week RA results post diagnosis

So I just came back from seeing my RA nurse specialist. Unfortunately my inflammation is worse than last time and my CRP and ESR blood levels are also raised. As I have only just come up to the full strength dosage of both my hydroxychloroquine and sulphasalazine, she still wants to give it another four weeks before deciding whether to change the medication or not. If it is still as bad as current then they want to add methotrexate to the mix. Great! More pills!

Weirdly, I also showed as being deficient in vitamin D which is frankly bizarre as I eat a lot of oily fish, cheese and eggs! Another pill for that.

And I'm back on the steroids because they need to get my inflammation under control. More pills.

Total pill count per day: 29. Holy moly.

21 Replies

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  • Yeap, where does it all end?!?

    Hope you get your bloods sorted out.

    MJ

  • Thanks xxx

  • Oh yes more problems more pills , I said to my specialist don’t give me any more pills as there’s no room left in my pill box

  • I've had to buy a new spongebag. Ridiculous. X

  • I was shocked that I test as severely deficient for vitamin D despite my dietary intake but it seems to be common amongst my siblings tho' mine is particularly low even by our standards and proving tricky to improve.

    I hope that the steroids work well for you and get this inflammation under control and bring about an improvement for you.

  • Hi

    Both my daughters have been diagnosed with extreme vitamin D deficiency, despite a good diet. The youngest has proven difficult to resolve with medication and has now been referred to hospital.

    I've never had mine tested but do wonder that I maybe should? I've no doubt I'd find it lacking and that this must contribute to my overall fatigue?

  • It might be a good idea for you to do this - apparently, it can be quite surprising what resolves over time if you can improve your levels after a significant period of severe deficiency or inadequate (depending on categorisation).

    If your CCG isn't financing these tests (some don't) there's an NHS hospital in Birmingham that has a section that does mail tests for £28 - City Assays.

    vitamindtest.org.uk/index.html

  • Thank you

  • NHS do the test free.

  • Oddly enough, not in all areas - it's something that CCGs are cutting back on. Even if a CCG will fund one test, they can refuse to fund follow-up tests which is why I gave the option. Jules13

  • Oh. Weird. It's just a blood test though.

  • I find sitting in the sun keeps my vit D Ok. I'm just deficient in everything else! :-)

    Hope you get sorted soon.

  • I sit in the sun whenever possible. That's why it's strange xx

  • Ah...no rhyme or reason to autoimmune issues. I'm anaemic, yet eat a shed load of iron rich foods...plus vit c!

  • Actually, most ra patients are deficient in vitamin d. They are not sure why. I'm deficient in vitamin d too, so I take a supplement for that. I'm also taking sulfasalazine. My doctor just increased my dose to 1,000mgs twice a day, along with weekly injections of orencia. My esr is 55. Hopefully something will kick in.

  • When you have a major vitamin D deficiency you usually need some supplements to bring it back up. There's not enough strong or regular sun in the UK, I was told to make enough difference to improve your vitamin D when you have quite a big deficiency. Even D rich foods don't always put the deficiency right without some help. I think I may have to keep taking my Vit D even though my levels are now back to norm.

    Re the meds. I'm glad your rheumy is thinking that if this doesn't work there is plan B but personally speaking the oral RA meds I've had have all taken 9-12 weeks to work but I did feel some improvement albeit slight after 8 weeks on MTX. Hoping your med kicks in in the next few weeks. xx

  • It's got to start working soon. Another week with no work. I have a horrible feeling the word has spread that I'm ill and my clients are getting in other designers. Scared as anything.

  • I hope so and if it hasn't by the time you see your rheumy (I know you said she wanted to take the med to 12 weeks which is standard procedure) then you need to discuss the fact you are self employed and a designer and if you can't use your hands then you can't work..

    I am an artist/do art and design work too and I have had the same fears about my hands and fingers. I have some joint damage to them but it hasn't affected my artistic abilities at all. I also do screen printing/use machinery and it's very physical although I pace myself. The fatigue element is something you don't want to have though when you need to finish jobs. I had to stop doing work when I was selling my Mum's house as I couldn't concentrate. Too much to do as well. Just getting back into it but it isn't a necessity I work at the mo. Are your wrists seized and fingers too at the moment? You could ask the consultant for hydrocortisone injections to the wrists. For individual shots to specific fingers it never worked for me but worked great for my wrists. Shots to the wrists alleviate all hand and finger swelling and pain for me. Lasted 5/6 months but I do react well to the shots.

    Re triple therapy .. adding in MTX to your other meds .. Before you can try a biologic medication you have to have tried MTX and one other DMARD so it's not such a bad thing adding it but I too be disappointed for more meds.

    There is still time for it to start working in the next few weeks. Let's hope so. Crossed fingers for you. xx

  • Hey i live in Hawaii, sunniest place in the world. Being outside all days.. and same vit D deficient:( thinking it is RA issue probably, our body not working well

  • Eight years ago I was on five different medications, but gradually this went down to two. It may all seem so overwhelmingly hopeless, but there is hope! Believe it!

  • Aw, glad you can smile anyway! Attagirl... It is startling, I know - but, cor, won't it be worth it if it works..!! Keep my fingers crossed for you. Good luck & God bless.

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