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Lupus Treatments?

Oct 14, 2016 6:26 PM

About three years ago a dermatologist diagnosed my mom with skin lupus.. A few months later her Rheumatologist confirmed she has Lupus. The only thing that's been done is putting her on Prednisone. Her Rheumatologist sees her every 6 months - says she looks good and he will see her again in 6 months. So as I sit and watch her decline and her pain increase I can't help but think there has to be a better way. That's why I had asked earlier about Forteo. She got up one morning and some how during the night she ended up with a compressed fracture of the spine. Bone density test shows osteoporosis. She also has Sjogrens, Rheumatoid Arthritis, Fibromyalgia and a lot if back issues from spurs and bulging disks etc. She can't take narcotics - they make her sick.

Any suggestions?

My kids and my mom.

Oct 15, 2016 6:33 AM

New dr. First that cares about her doesn't seem to care about her like he should. Sorry you mom's going through that

Oct 15, 2016 9:50 AM

Mimikay, I'm sorry that your Mom is suffering through this nightmare. I wish that I had some useful info other than getting her a new doctor. Sending well wishes and best of luck in helping your Mom. {{{Hugs}}}💕

Oct 15, 2016 10:34 AM

Moms of the generation that believes they owe loyalty to their doctor. Her primary doctor misses a lot. Because of her Osteoporosis she did see my Rheumatologist who treats many who deal with this. He also is highly recommended in the Lupus community. However he is the one who recommended the Forteo shots that she is not wanting to do. I hope that I can get her to transfer all her Rheumatology care to him. Just may need to call in reinforcements from my sister. She is dossier than me and a Social Worker. The Prednisone she takes makes her prone to bruising. Even the slightest tap leaves bruises. Her skin tears just as easy. There just had to be a better way than spending years in Prednisone. (she was originally on it for her arthritis).

Oct 17, 2017 7:37 PM

Hey Mimikay, did your mum manage to get a new doctor? I saw you originally posted this a year ago so I’m hoping she made some progress with her lupus meds and pain management. I have lupus too although not the skin type and can’t have Prednisone in any form as I have nasty reaction to it. For me, combination of hydroxychloroquine (Plaquenil) and azathioprine (Imuran) really works. I had no side effects to either of these drugs. Maybe I was lucky, but I’ve learnt to count my blessings however small they may be. I sincerelly hope your mother has found not just a new doctor but a way way to a better quality of life with less pain.

Oct 17, 2017 7:44 PM

The prednisone can also be making her bones weaker and her lungs fibrous. There has to be a better way. New doctor ASAP.

Apr 03, 2018 8:57 PM

Look into Essential Oils (my choice is DOTERRA; I've heard good things about Living Young as well). My pain was continuing to increase. Since I've started using DoTERRA oils and suppliments I've hardly touched my Rx pain meds. I still take Plaqinil, but am hoping that won't be for much longer.

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