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Sticky Blood-Hughes Syndrome Support
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APS and Steroids

Need some help here. My lupus has been out of control for about 6 months now with no one really able to help. Rheumy just tells me he is always on hand though I have to fight through GP and his secretary and will possibly get a reply from him within 6 weeks. I was in so much pain that my GP put me on a week supply of steroids. Great pain went but now my APS is not good. Getting fizzy pain all over and my circulation is appalling. Who should I ask to see. Im getting quite worried now as i seem to be going downhill a bit and at times can hardly stay awake.

Need help folks, but dont know who to ask to see.

4 Replies

Right, please ring his secretary and get their email address, also do the same for your GP, then write a short, hard and factual email addressed to the consultant on the secretary's address, with copy to GP on their secretary's address saying how urgently you need to see them. Head the email, urgent.

Once you have an appointment, make sure you take your most trusted, neighbour, friend, colleague or relative with you, you need an advocate. Make sure you write down your symptoms and keep things with you so you don't lose detail. Get the email off and then ring for an appointment or get your most trusted friend to do so. Your consultant has said they are on hand, remind them of this in the letter, their secretary will be being a gatekeeper. Please let me/us know how you are getting on. Do be sure to make sure they look at you D, B, iron and Thyroid levels also. You will have to be firm and push a bit, hence my suggestion of an advocate. I was recently somebody's advocate, not related to any of our conditions, but it worked a treat! MaryF


thank you very much for your reply. Ill do that today. Im really feeling very muzzy and my speech is a bit slurred this morning. Good time to contact. Regards Diane


If you get any worse, please do seek more immediate medical help. If your partner and or friend is around get them to make a film of how you are, you will not be the first not listened to, do let me/us know how you get on, and really the best of luck with it to you. MaryF


Many thanks. Today ive slept 90% of it. Ive got an appointment with the gp on Thursday and ive phoned up the rheumy dept.

Since beig diagnosed 15month ago I have been so thankful for this site. It has kept me sane and at times in very good humour. Its nice to know other people are out there.

Ill let you know how ive got on later this week.

~Regards Diane


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