Mixed connective tissue disease

Hi I was diagnosed with mixed connective tissue disease 5 years ago and was put on methotrexate I recently moved a year ago and that caused me to change my rheumatologist however they have given me an appt so far away and already it's been 9 months with no medication I have few aches and pains but I worry about what's going on on the inside of my body. Someone please help I feel stressed all the time scared this long time without my meds may have caused some internal damage😔

3 Replies

  • I have had nine months since I last took any disease modifying drugs for my

    mix of RA plus Sjogrens and Raynauds. My rheumy felt it best because I am so drug intolerent - have tried Sulfasalazine, Hydroxichloraquine and Methotrexate (oral and injectable). He said he would see me again in four months but it turned into nine despite my GP complaining. I was having investigations with a neurologist during this time though.

    Have you a good GP now and can they push for this appointment to be hastened? Could they put you on Prednisolone to keep your immune system suppressed if you can tolerate this perhaps? My GP emails the rheumatologist between appointments if he's concerned. Can yours do this if there's a shared care protocol? Are you having regular blood tests to check your renal system, inflammation levels and heart, lungs etc as well as joints? If not can you explain your concerns to the GP and ask them to run a full blood count and keep an eye on things perhaps?

    Nine months feels like a long time I know - but in the scheme of things it doesn't appear to have done any damage to me - although I'm flaring now and on a mixture of max doses Naproxen, codeine, ranitidine and Paracetamol. My ESR goes up steadily when I'm not on any proper medication - presently 58 - but anti inflammatories get it down again a bit. I don't like the idea of being stuck on this mixture for too long but am pretty unwell on nothing. I have to push to get checks done by my GPs though - they only monitor me when I'm taking the DMARDs.

    I saw the consultant a few weeks ago and he agreed to my trying Azathioprine but I'm honestly not sure what he would have said if I hadn't suggested this option to him first. He seems to think that if the bloods are okay and chest x-Ray okay then the systemic inflammation in itself isn't a worry. I don't really agree - it worries me - but he's the expert I suppose. We hope to relocate to a better healthcare set up soon and I start Azathioprine next week. Hoping I tolerate it well. Best of luck.

  • Thanks a lot for the advice and just for talking to me it took a little stress off my back and I am going to definitely touch bases with my GP soon as Monday hits. Good luck and God bless u and keep u.

  • Hi Twitchy

    Good luck for starting Aza next week. Fingers crossed you can take it and it helps!.

    Take CareX

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