Anyone with lupus or SLE: How do you manage your condition?

Welcome @jearanai13. Allow me to introduce you to a few members like @ejlm @debbybundy @thunder_dog88 who also have SLE and can share how they manage their condition.

You may also be interested in this related discussions:
- Systemic lupus erythematosus (SLE): http://mayocl.in/2r5ZiXg
- Tumid Lupus with SLE Symptoms?: http://mayocl.in/2qJpF2Q

Jearanai, have you recently been diagnosed with lupus? What are the symptoms you find most challenging and how are they being managed?

I got diagnosed with SLE three months ago. Inflammation and pain are affecting me the most every single day. After I stopped prednisone, my inflammation came back as well as swollen joints. It can be difficult to walk if it affects joints on my feet.

@jearanai13 it sounds like you have been dealing with this inflammation and pain for 3 months except when taking prednisone. Is there a reason why the doctor had you stop prednisone? I know prednisone can be hard on the body, but it can make such a difference. After 4 years, I’m just now coming off of prednisone. The doctor replaced it with a ‘steroid replacing’ drug that has the same positive benefits as prednisone but none of the bad effects.
What is your treatment plan?

The doctor said prednisone is not good for long term health. I also couldn’t sleep much with prednisone. What’s the medication that you use to replace prednisone with no bad effects?

@jearanai13 I’ve been on prednisone for about 4 years and last May i started on Mycophenolate mofitil. My brain inflammation is “under control” so I’m now tapering the prednisone. I’m at 5 mg currently.
Yes, prednisone is hard on the body; I’m now dealing with bad osteoporosis and just had cataract surgery. But, my autoimmune disease that almost killed me, is under control.
Is your doctor planning on using something to control the lupus?

My doctor wants to start me on Methotrexate. It’s immunosuppressive agent. I think I will give it a try as my symptoms are not well controlled after getting off prednisone. Now I am on hydroxychloroquine only. Maybe it’s not enough to suppress my immune. Thank you for sharing your medications with me. I will look to mycophenolate mofitil. I have never heard of it.

My Neurologist wants me to try that drug. Besides the Lupus I have terrible neuropathy. What kind of side effects have you experienced if any?
Thank you,
Sallie

I read in some other posts on this site that drug-induced lupus can become permanent. This contradicts the medical info I've seen online, which states that drug-induced lupus is definitely temporary andgoes away after the drug is out of the system (which sometimes can take months). Could someone please clear this up?? I have been told my lupus could have been caused by Remicade, so stopped taking it several months ago.

@sal99 I took mycophenolate Mofetil for about 3 years with no side effects until this past autumn. I developed severe diarrhea which the doctor said is the worst side effect and rare. It took me awhile to recover and now I’m on a new drug-mycophenolic acid. But, Mycophenolate mofetil (cell cept) worked very well for me until it didn’t. Now, I tell patients to know the side effects of drugs that you're on, especially the serious ones, and to let your doctor know immediately, Does this help at all?

Ys thank you. I am very sensitive to medications. Yhe side effects always make me think twice about yaking them.