Update

Hi all hope you are a having a pain free day .... met my rhumi nurse today only ever seen consultant before ... she was lovely and really thorough she explained all my bloods even gave me a print out ..my crp is still normal and all my bloods ok but my anti ccp is 340 wow thats high she explained that this will need close monitoring even though my crp suggests remission ...odd as still pain in fingers and swelling and I told her about the awful headaches and neck pain she suggested it may be neck inflammation ( have been swimming a lot) and gave me a steroid jab to see if this helps neck and stops headaches and has also referred me to a physio...in Jan I am up to 17.5mg methx and then 2 weeks later 20 mg and sulfasalzine I guess to maintain the improvement since my diagnosis in Aug.....so all good I reckon do you guys? Hated Methx and now I am beginning to be greatful for it , still struggling with the life changes and the awful fatigue but continue to remain positive and think of people so much worse than me Claire x

11 Replies

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  • Hi Claire great that you felt so positive after seeing the rheumy nurse and that you felt she explained things. Hope that the steroid jab gives you some relief from the headaches and neck pain.

    carry on thinking positively cris xx

  • I think that's really positive that your rheumy team are keen to wallop your RA hard, and get it into submission. So although the thought of taking more drugs might be a bit worrying, if it works then great. I've ended up on 3 DMARDS, and that really got to me to start with, but I've sort of learnt to love them for keeping my RA under control. Polly

  • Before we were petrified of mtx and now Claire we think its our very best friend :)))))) how things change eh.so glad you had a good appt today,you thoroughly deserve it as your so lovely and positive all the time.lots of love and keep smiling,your doing brill xxxxxxxxxxxxxxxx

  • Hope you are feeling better after your injection Claire, as you have said there is worse people out there than us Xx

  • Hi Claire, hope you get some relief from your steroid jab. Sorry you're suffering with the headaches - I find joint pains easier to bear than headaches. I'm sure you'll find an improvement as the weeks go on with the MTX, I don't think you've been on it too long yet?

    I've really noticed a big improvement in the last couple of weeks and I've been taking it since May. Yesterday I was at work and honestly felt "back to normal" - if there is such a thing. I know it won't last but it's nice to know we can have days like these.

    Caroline. x

  • Yay we like normal - thats fab x

  • Thank you very much everybody for you kind comments ....Happy Weekend xx

  • When you swim Claire do you use goggles and put your head down in the water. I only ask because I swim a lot and suffered terrible neck pain before I invested in some goggles. It took a couple of sessions to get used to them but it really helped.

    Paula x

  • No I don't use goggles Paula and am one of your typical girlie swimmers who yes prob strains to keep my head up!! Maybe I should give them a try its all a process of elimination isn't it ....thank you x

  • Thanks for posting about this Claire. It kind of confirms my suspicions that it is the RA that is playing silly games with my neck after all..

    I remembered where I read about inflammation causing arterial pressure. It's in a very good leaflet produced by Arthritis Research UK. arthritisresearchuk.org/art... You can download it on the right hand side of that page.

    So good to hear you're keeping positive and doing better. I hope you keep getting well too x

  • H Claire, I think that's a good nurse you've got for explaining everything so clearly. Your anti-ccp is high - I know Shirl was asking about hers which I think is the same as yours. If these things are high then they mean something but it doesn't mean that much when they are low if you still have symptoms and pain. A good rheumy team will use all the different blood tests from CRP, ESR, anti-CCP, Rheum Factor etc along with visible swelling and symptoms in order to work out if the medicine is working or not so you obviously have a good team I would say - certainly your nurse sounds spot on. I don't have a nurse or anyone I see regularly who knows that much so have to rely on my GP - who isn't a specialist of course but he knows a bit I think and he emails my consultant too. Hang in there with the MTX - it may work much better when the Sulpha is added. I strongly advise you not to keep your head up when you swim as it's meant to be very bad indeed I've been told. Tilda x

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