Sticky Blood-Hughes Syndrome Support
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Ho Hum!

I have been on steroids for over 10 years now and know that my adrenal function is non existant. My Rheumatologist has told me he wants me to come right down to 10mm. In doing so the only DMARD I am on is methotrexate. As I come down off the steroids most of my symptoms are now coming back. I am currently suffering with painful feet, Beau lines on finger nails, difficulty in swallowing, including water. I also have pain right through my body from feet, knees, hamstrings Back and shoulders. I have recently found the area around my left ear is swollen. I have seem my GP, who has asked for a full bloods test. I was told last week that they came back fine including the thyroid. I am trying to see him again to discuss the results when he is in tomorrow. Where do I go from here. I have tried to remain positive for so long. Should I contact my rheumatology department and ask for an appointment.

7 Replies

Les - why were you put on steroids in the first place? Do you have another condition that needs them like Lupus for instance. Have you been put on Plaquenil? And in answer to your question, yes you do need to see your Rheumy but only if they are a Hughes specialist, if not then it would be better to find one so they can treat you taking into consideration your whole picture and using up to date research for your medications.

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Hi, I also have RA, AS, Sjogren's Fibro, and was put on steroids for GCA (Giant Cell Arteritis)


Ah! Even more reason that you need to find a specialist who can factor in all of these conditions and get you on the right medication for them all and not stop one at the risk of something else.


Hi and yes do see a specialist, and only if off our recommended list and regarding thyroid, they only test the TSH, which is a useless test and fails and awful lot of people, I do my tests separately, I pay for more accurate private testing, which covers several tests, via the recommended testing centres on Thyroid UK's website, otherwise I would have been left with a Fibro diagnosis. These tests did show up very clearly several times over that I have a slow Thyroid. MaryF

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Thank you, I will try that. I have had no active treatment for 4 years, all they want to do is reduce my steroids, Whilst I have gone from 25 to 14, my symptoms are coming back.



You really need a Specialist of autoimmun illnesses to look at all those diagnoses of yours!

Best wishes from Kerstin in Stockholm


Aloha from Hawaii!

You're going through a tough time...

I feel sympathetic. I've been on 5 mg Prednisone for about 10 years.

I've been told I can't ever go off of it.

If I have a flare of my APS/lupus, I can tell right away by my symptoms (similar to yours).

And my Rheumatologist has prescribed a temporary increase in steroid dosage.

Hope this helps!

Kerstin from Hawaii


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