Scleroderma & Raynaud's UK (SRUK)

Generalised morphoea and emphysema

This may not be coherent as I think I'm in shock! Diagnosed in March, have been on MTX since then 15mg. Followed by Mycophenelate 6 weeks ago. Had a CAT scan May 31st to make sure turning off my immune system wasn't letting any nasty cancers run riot. Received a letter from dermatology consultant - actually not to be to my GP and I was cc'd. It says: "Just a note to let you know the CT scan this lady underwent was relatively normal apart from some signs of emphysema."

The letter was written on 9th June, received by me 24th. Am I going mad? Is this a reasonable way to let someone know they have another incurable progressive disease? As both MTX and Myco can affect lungs should I even be taking them? Anybody? Any thoughts?

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Hi Chris, it sounds to me like you need your GP to refer you to a Respiratory Physician for a conversation about what the best way to deal with your multiple conditions. They will be the best people to know how to manage your emphysema, and whether the MTX and MMF might be contraindicated. From my knowledge the risk with MTX is interstitial lung disease, but we are talking about a pretty rare complication. Obviously your situation is going to require close monitoring by all departments involved.

Regarding you being copied into a letter revealing information that no one has previously discussed with you...I think it is not acceptable, but unfortunately these things seem to occur quite often. I had a CT scan of my lungs a few years back and the letter they sent to the Consultants was copied to me indicating that they thought I might have tumours in my lymph nodes and should get a biopsy done pretty quickly!!! That was a shocker I can tell you. It would have been nice if someone could have had a face to face conversation with me rather than seeing it on a bit of paper without any warning. So I know exactly how you must be feeling. Try and find someone helpful to talk to about the situation...maybe your GP or Consultant?? and make sure they give you information about the management plan from here.

Wishing you all the best

Lucy xx

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