Advice please!

Hi. I was diagnosed with organising pneumonia/ interstitial lung disease last year and after much steroid treatment, was given mycophenolate mofetil as the doctors felt that the lung problem was indicative of an underlying autoimmune disease that they have yet to diagnose. A while ago I suffered from excruciating joint pain in my wrists and ankles after weeks of intense headaches. Went for an ultrasound which found nothing. This passed and now it's back again. Same pattern - headaches that were extremely painful for 2 weeks and then just as the headaches lift, the joint pain is back and so painful that I can barely move. Co codamol is not working and in fact nothing is working to help relieve the pain. Also potentially noteworthy is that for the last 3 weeks I have had an intensely itchy rash on my scalp, neck, ears, chest, shoulders - looks a bit like hives but not sure. This is very difficult for me and I don't know what to do. I've contacted my ILD nurse at the chest clinic but it's not really to do with my lungs and I'm not due to see my rheumatologist until December. I have a 4 year old and a 2 year old and I am struggling to keep up with them with this joint pain. Any advice? Oh and the reason I'm on the lupus community is that I'm beginning to think that this mystery autoimmune disease is in fact lupus. Look forward to hearing anything from anybody xxxx


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9 Replies

  • I'm a 33 year old female.

  • Hello Evine,

    Just some thoughts -

    A bit like you, my initial symptoms were shortness of breath and painful joints in my hands.

    I am now diagnosed with interstitial lung disease, secondary to mixed connective tissue auto-immune disorder, and am under the care of a respiratory consultant for the lung issues and a rheumatologist for the auto-immune stuff. The exact terms they now use to describe my condition vary - sometimes my consultant letters are headed "Connective Tissue Auto-Immune Disorder", sometimes "Sjogrens Syndrome", sometimes "Interstitial Lung Disease" and sometimes "Overlap Syndrome".

    Overall, I feel that helping the rheumy and respiratory teams to communicate has been key for me. For instance, I have been known to ring the rheumy nurse to report my latest respirology review and ask her to seek advice from the rheumy about the recommendations my respirology consultant has made. They are very tolerant(!), and usually they will ring back and say, "Dr X says that's fine" or whatever. In fact, one or twice, they have actually arranged earlier appointments for me.

    It sounds like you've already started this process, but the ILD nurse hasn't been much help? Could you have another conversation with him/her and ask them to clarify what they think is the best thing for you to do to hurry up the rheumatology appmt, or whether they could put you in touch with the specialist rheumatology nurse directly?

    After 6 months of treatment with hydroxychloroquine and prednisilone, my hand pain and joint stiffness are still there, but the pain isn't as severe and the swelling has gone. Keeping them warm helps!

    Hope this is some use X

  • You are so so kind responding to me - thank you. I honestly feel so isolated with it all. I'm going to call the ILD nurse tomorrow again and push to get some advice and meanwhile raid the medicine cabinet for something to help the pain now. I completely agree re communication between specialities - although they hold a combined clinic, it still feels that they're disjointed (pardon the pun!) somehow. Thank you again so so much for taking the time xxxxxxxx

  • No problem, Evine. I only joined this forum recently (I was diagnosed in April) and already it's been a near lifesaver! Auto-immune stuff is really hard to cope with - the conditions are complex, the symptoms can feel really scary, and no "normal" person seems to have any clue what you are talking about. So it's really easy to feel isolated and alone with it all.

    Finding people - even if its only online - who understand this is such a help.

    Good luck! x

  • Your words brought tears to my eyes. Thank you. Thank you. Thank you. I found some naproxen left over from when I had a hip operation (didn't hurt as much as this!) which I've taken and I've eaten a banana so I'm set for the night I hope. Time will tell tomorrow when I have the kids to myself.... 😬 Thank you again xxx

  • well done - and keep in touch!

  • I would either contact the rheumy clinic myself to ask for the appointment to be brought forward (in the hope) or, and probably better, get my GP to contact them for me and emphasise the emergency nature of the request. They can, if necessary, ring the rheumy department and tell them they are sending you for admission/assessment and send you to A&E (sometimes that isn't accidents, it's admissions and emergencies). But I wouldn't be waiting for December and they need to see it in all its glory to know what is going on.

  • Thank you for your advice! I managed to get hold of the rheumatology nurse and I am seeing my rheumatologist on Tuesday morning which is great!! I have also just found an enlarged lymph node on my left collar bone which is freaking me out a bit so I went to the gp yesterday evening who couldn't find any sign on infection but thought that the lymph node was smooth and therefore 'probably' nothing to worry about. I will of course mention it to my rheumatologist on Tuesday. It never rains but it pours eh?! Thank you again for taking the time out to reply - it's so lovely to feel supported. Xxxxx

  • Right - update time. Not that there's much to report. 'Continue with the naproxen for the pain, unless you'd like a steroid injection' (no thanks!!) 'your autoimmune disease is primarily affecting your lungs, although they're clear now. Hopefully the joint pain will improve, no need to get for antibodies as there were none when we tested you last time, lymph node is nothing to worry about and most likely grisle, see you in December for another lung function and update.' C'est tout! I can't bear this wait and see approach and the nature of autoimmune diseases which affect everybody differently. It's so frustrating! Meanwhile, my joints tonight are killing me, the rash hasn't improved with antihistamine and I'm no further forward. It has not been a good day. I give up trying to work anything out anymore. I'm just going to make sure I have the pain relief nailed and try and get more sleep so that I can continue trying to get well. Thanks again for all your kind words and advice. Feeling low to say the least. :( xxx

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