How do I get corticosteroid prescription before d... - LUPUS UK

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How do I get corticosteroid prescription before diagnosis of condition?

Sarah030609 profile image
7 Replies

Hi there,

Over the past 2 months I've experienced a rapid shrinkage of seemingly cartilage (but perhaps bone) everywhere in my body.

The doctors at first thought I was making it up but now the signs are too much to ignore. A specialist agreed that there is an issue but he couldn't diagnose it at the time.

I no longer have the money to see a specialist and I've been referred on the NHS but my next appointment is over 2 months away and I am literally wasting away by the day.

It has affected my breathing and my general body stability.

I wake up throughout the night with intense pain in my skull and ribs.

If I lean forwards or back my throat feels occluded due to changes internally to my respiratory tract.

My head has felt unstable for some weeks and my partner noticed it was rocking so badly that it was hitting my chest and the back of my head when I was asleep in the passenger seat.

My jaw has literally wasted away which has meant the fat has collected at the bottom of my face giving my jowels.

The only 2 possible solutions that have been suggested are: relapsing polychondritis or rapidly progressing oesteoarthritis.

Both are treated with corticosteroids which prevent both diseases from progressing further.

How can I convince my doc to put me on them now before this ends up disabling me or worse?

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Sarah030609
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7 Replies
Lisalou19 profile image
Lisalou19

Your story sounds awful, poor you. I think you just need a doctor who will listen, which can be really difficult.

Book an appointment with your gp and take as much information with you as you can.

I finally got a prescription after attending the doctors repeatedly last January and everything they prescribed wasn’t working, until finally there was nothing else left to try and now I have a half decent life, not fully but better than it was. X

Sarah030609 profile image
Sarah030609 in reply toLisalou19

Mine haven’t prescribed me anything and are just telling me that I’m mad. I’m going to another surgery, I’ve been treated terribly. Hopefully the new doctors will help.

Sarah030609 profile image
Sarah030609 in reply toSarah030609

Thanks for the support x

Lisalou19 profile image
Lisalou19 in reply toSarah030609

Oh Sarah

I’m so sorry your getting the MAD label. This happened to me also and it wasn’t good for my own self esteem . I did have a mental assessment and was advised to carry on my fight for a diagnosis as my symptoms were very real. It’s awful because most symptoms are invisible to others.

Where abouts do you live?

I would strongly advise you to change if your gp will not listen to you.

Your not mad, remember that xx

Sarah030609 profile image
Sarah030609 in reply toLisalou19

Many thanks Lisalou 19. i realised after the changes to my appearance couldn’t be denied that I wasn’t in fact mad, but it’s so infuriating that the docs wouldn’t even attempt to explore the physical symptoms, especially as I have no history of physciatric illness.

What did you end up having and how did they diagnose it if you don’t mind me asking?

If you’d rather speak more privately my email is sarahavon2010@gmail.com. Look forward to hearing from you xx

Lisalou19 profile image
Lisalou19 in reply toSarah030609

Sorry please accept my late reply

Having a rough few days, made worse by a stinking cold 😔 will contact you once I am feeling abit more human

Xx

KayHimm profile image
KayHimm

Who are you seeing in two months? The specialty of the consultant may give a clue as to what they are ruling out. You are really suffering, and I think you need to try to see someone before two months. It is unlikely any doctor would prescribe steroids without knowing what they are treating.

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