I am trying to find Parkinson’s sufferers who also have Addison’s disease, as we are struggling to get the dosages right for my mum, who has both. She takes Levodopa but has still had to increase her steroid dose fairly dramatically since her Parkinson’s diagnosis. Consultants can’t advise, as Addison’s is quite rare, so we are going by trial and error which is not ideal. But there must be others out there with both conditions?
Thanks for any help. New to forum so hope I’m posting correctly.
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That sounds like such a difficult situation to manage, especially with two complex conditions. You’re definitely not alone in trying to find others with similar experiences. While we can’t share personal medical advice, you may find it helpful to connect with others in our community who live with Parkinson’s and other health conditions.
You can reach our helpline on 0808 800 0303 or email [email protected]. Our advisers can point you towards support groups or online spaces where you might meet others in a similar position.
It might also help to ask your mum’s GP or endocrinologist for a joint review with her Parkinson’s specialist to make sure both conditions are being managed together safely.
Parkinson’s UK Moderation Team