Cushings Syndrome

[Trudes]

Anyone else been diagnosed with Cushings Syndrome? As a result of taking prednislerone for 12 years to manage my lupus symptoms I now have Cushings. On top of hashimotos and sjrogens. Anyone else been through similar?

[shaws Administrator]

I haven't but this is a link which gives information and the fact it states:-

"Treatments for Cushing syndrome can return your body's cortisol production to normal and noticeably improve your symptoms. The earlier treatment begins, the better your chances for recovery."

mayoclinic.org/diseases-con...

The fact that you also have hashimoto's and sjrogrens you have three autoimmune diseases and I hope all are treated to an optimal level and the doctor/specialist is knowledgeable.

[Trudes in reply to shaws]

Thanks but it isn’t as simple as taking a medicine. I need to come off the steroids but I have become steroid dependent so I can’t. I am also insulin resistant which further complicates the process. I am stuck basically. I have to come on off the steroids but I need steroids.

[Hidden]

I've had Cushing's disease caused by a pituitary tumour, however I am admin for a Facebook group where we have several members who have Cushing's syndrome caused by long term steroid use, so if you are on Facebook then look for Cushing's UK to talk to others in a similar situation.

[Trudes in reply to Hidden]

Thank you.

[Mama196]

Sorry I can’t help but just wondering about sjorgrens diagnosis- how do you get diagnosed? I feel like I have some of the symptoms: dry eyes and mouth, achy joints, miscarriage but I think these are also hypothyroid symptoms. I’ve had a test for lupus as part of miscarriage testing which was clear but didn’t test for sjorgrens- I assumed it was too rare or something that they don’t bother.

[Trudes]

Hi Mama196

I was tested for Sjrogens at the same time as Lupus by the specialist team at the Louise Coote Lupus Centre in London.

I had 5 miscarriages and carried my son to 26 weeks before he was born by emergency section.

I have my ANAs tested 4 times a year and 3 times out of 4 I test negative even though I have lupus nephritis confirmed by kidney biopsy.

Don’t give up. Push for referral if possible to London as many rheumatologists aren’t knowledgable enough.

[LizzieG101]

Have only just been diagnosed with steroid-induced cushings which has made me gain so much weight ( 5stones) i have developed Type 2 Diabetes. But no one seems to have a plan as to what to do and where to go next. Bewildered. I was given the steroids initially because of lupus and last year because of pleurisy and pneumonia.