Consultant

Went to see consultant yesterday. Confirms I have moderate disease activity DAS score 4.5.

Not high enough for biologics as per Nice guidelines but will put me forward for research which is researching biologics but couldn't give me more details as my or maybe accepted.

Didn't make any adjustments with my current medication but said can be adjusted. If I don't take part in the research I need to call so I can have an injection into my right elbow.

I don't want to increase MXT or Sulfasalazine further as I already suffer from their side effects. So not sure what can be done.

From what I can see I need to continue with fatigue and discomfort which is not good for me as already struggle day to day.

I mentioned I have had a cough for the last 6 weeks but no response to this although MXT can cause lung problems.

Just felt I needed to get this off my chest as I'm no further forward than I was before appointment.

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15 Replies

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  • Morning Matilda- putting a 'like' doesn't seem the right thing to do😔It doesn't sound like it was a very fruitful visit at all!

    To be honest, I've never actually been told my DAS score...I have only ever been asked for a score out of 10 as to how I feel and they've written down how many joints it affects. I always tell them it at it's worst, as we all know, it varies all the time! I had to wait for at least 3 months after starting the sulfasalazine before anything could be applied for. My rheumatologist knew I needed biologics before then and that nothing else would work because I was so bad but had to follow the NICE guidelines of trying 2 DMARDS. Go back as soon as you can and keep going back. Maybe go to your GP and talk to them about what can be done? Keep at them....you deserve to start to feel better x

  • Hi Matilda

    Sorry you are struggling. Just to say, I developed an awful cough four weeks into treatment with sulfasalazine. This continued for months even after stopping the drug. I was allergic to the awful stuff. Thankfully chest X-ray came back OK.

    I would go to your GP and tell them you have had a cough for weeks. They have to offer an X-ray if someone has had persistent cough.

  • Thank you for kind responses

    I am on three DMARDS already started 3rd one sulfasalazine in December so maybe connected with cough.

    Spoke with my GP a couple of weeks ago regarding my cough. It's worse at night keeps me awake.

    GP advised to increase amitryptiline further to aid sleep. Which has helped but continues

    I will go back to gp next month if cough persists.

  • Dry cough at night could be reflux cough perhaps? Some drugs are bad for exacerbating reflux and gastritis I have found. Sulfasalazine was my first DMARD and gave me a full blown anaphylaxis after 3 weeks so I never got that far. Re DAS scores - really not fair to have such a high cut off when you are already on 3 DMARDs. They sometimes take people off all meds in order to get a clear view and see if this helps them meet the criteria. Did your rheum not suggest this as a DAS of 4.5 is high when you consider that you are on full quota of modifiers?

  • No suggestions were made apart from going onto the research project.

    The one question I have once the research project has finished will I be able to continue if it has shown improvement

    I was asked to call the secretary if I'm not going to try the research project to arrange a steroid injection for my Rhuematology gut elbow. At least I can have monthly blood test now not fortnightly which I have had since July. They were having difficulty getting it last few attempts.

  • Seems odd to me that your rheumy isn't making bigger efforts to help you meet stringent criteria. If you are on 3 drugs and score still high then this isn't good enough surely? I've never been offered to take part on research project but wouldn't this involve more frequent taking of bloods again? Sounds like you need to do more research yourself now before deciding. Can the rheumy nurse fill you in more?

  • Hi Twitchytoes

    Thank you for your reply

    I am also have thought overnight some of things you suggested. I'm waiting for a call from research to make the appointment and bring up the problems that have been suggested and I thought of overnight. That's where this forum helps.

    Hope everyone is as pain free as they can be

    Matilda x

  • You are welcome. Your posts always catch my eye because my real name is Matilda too xx

  • Go back to Rheumy team ASAP. I developed scarring on lungs due to methotrexate. Cough and breathlessness. After Xray and MRI scan Rheumy stopped methotrexate there and then to stop development of Interstitial lung disease. Go back asap

  • Thank you for your advice.

    I will see GP asap and ask them for an X-ray

    If I decide not to take part in the research project I will need to see Rhuematology asap for a steroid injection in the next couple of weeks

  • Yes I would phone secretary for another appointment as you have failed 3 dmards and your DAS is high I would think you qualify for Biologics, hope things work out for you

  • I was told 5.1 by the consultant and also mentioned the steroid injection I had 7 weeks ago may have masked symptoms

    To review in 3 months

    Thank you

  • That seems unfair. I have AS and a Bath DAS greater than 4 meets criteria for biologics. I assume the questions in the scoring questionnaire are similar, swing as the illnesses are similar. Hope you get on the research soon

  • It's an unfair test for biologics u could have joint pain & swelling & on the day they check u got this it may not represent how u are that usually- u may need to do the pain score based on ur worse days to qualify. Wish u luck

  • Thank you for your reply I think that's what I need to do as I was seen on a good day.

    I struggle at work as most of the time I need to hand write and by the end of day I'm in a lot of pain.

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