I have Lupus (sle) but also have other autoimmune illness's but doctors have'nt a clue about me,Is there any1 else in same situation?

[Lisa78]

I have been steroids for nearly 7yrs now which have caused me to break my hip twice in last 8 weeks & i'm only 34yrs.Am really scared of breaking it again

[MaryF]

Hi there, I have Lupus (SLE), Sjogrens, Hypothryoidism, Psoriatic Arthropathy and Hughes Syndrome, which can some time be hard to diagnose, Hughes syndrome can sometimes cause fracture whether on steroids or not, due to lack of blood flow at times! Mary F x

[Lisa78 in reply to MaryF]

I never knew that about Hughes syndrome as the doctors have never said to me & just say i'm complicated especially about my recent hip fractures.How r u treated?Im on steroids,Methotroxate & lots of other meds 2 deal with pain & side effects.

[jayniey]

Me 2, I have SLE, Marfan n Ehlers-Danlos. It's a bummer. I wish u all the v best with the dox. I have been told I was imagining it until I saw my current rheumy at Addenbrookes.

She's a diamond, if she was a bloke, i'd divorce my ol' man and marry her!!. By the way, don't let them give u pregabalin. U have been warned if u r susceptable to evil side effects.

Take care. Love J. XX

[Lisa78 in reply to jayniey]

Thank you for the heads up about Pregabalin but hoping my current traetment is working and had same with consultants in the past but gt a lady who is really nice but don't know how 2 deal with me.All the best 2 u as well.xx

[Needmorehours]

Hi - can I ask is this Dr *******? I used to see Dr Jenner until he retired..... Now I have switched, but am not impressed - I was kept waiting an hour and then was rushed out because he was late for a teaching session... My appt was rushed, I didn't feel he listened or was that interested; since he was late. ....

[SarahHeney]

Janey, what is the Pregabalin given for? Just so I know to avoid it! Thank you x

[nass361]

Were u taking Calcium and Vitamin D3 supplements with steroids? They are the only ones that can save your bone density.

[Lisa78 in reply to nass361]

Yes i am and had a bone scan 18mths ago which showed slightly lower bone denisty but not enough 2 break my hip twice.They done another bone scan after the 1st break.Ty