Hello, all. Project due soon. Thanks for your help so far!
5. What does it mean exact for you specifically when your lupus is in “remission” (as the term is not formally defined)?
6. If you are a man with lupus, how do you cope with being a minority?
7. Are medications worth taking? (e.g. expenses, side effects)
For me, remission means that my kidney function levels are stable. Also for me with having Lupus Nephritis my Doctor looks at the levels in my urine, which are the protein levels and creatinine levels... and so those levels determine if he needs to higher or lower my dosages in my different medications. He also looks for blood in my urine which could also mean a flare.
I am not sure I have gone into remission. As to medication at this point plaquinel and prednisone I think saved my life. I went from being unable to eat, walk, severe pain from head to toe. To slowly functioning again and most of my pain is gone. Medications helped with pain however I still have a lot of other symptoms .
I think a *remission* is different for each person. I don't have organ involvement so far, but I have pain and fatigue that can be overwhelming, and never goes away entirely.
Yes, yes, yes! Medications are worth taking, and are likely life saving, plus quality of life saving..
I didn't know that there was a such a thing as remission with Lupus.
Going into remission, has allowed me to return to working. I had been underemployed and working in a warehouse after the recession, and Lupus showed me that I can no longer continue this work. I'm now working in an office environment, and I'm managing the fatigue.
My medications are mostly generic, and yes I believe they are worth taking for my quality of life...
At Ann A. I was diagnosed 3yrs ago and I have never stopped working, I do believe in taking my meds and going on with my life as usual, I don't let my health keep me from doing what ever I want to do. My triggers are being out in the Sun too long and not getting enough rest during the day but I am much better at managing those issues now. Maybe I will someday go into remission like you and be free from all of my meds.
Praying for a Cure.
A remission is either a return to your original state of health or simply a plateau of your lupus staying stable and not being as bad as its worst. Usually it’s in between the two. I’m in a pretty good remission now as far as symptoms go, back to about 80-90% of how well I used to function before I got sick (though I feel worse a lot, I can do about as much.) However, I am still on a low dose of steroids and go into a flare every time I try to taper down below the dose I’m at. I probably still have the effects of my last Rituxan treatment (immune-suppressive infusions you normally have every 6 months.) I’m now at 7 months and waiting to see if I need the next one or if I’m stable without it. I also need my prescription anti-inflammatories sometimes. I was never on heavier pain meds.
To really call it a “remission” in my book, I’d say I should be feeling how I do now but without steroids. That still wouldn’t be a 100% remission because I do still have symptoms and it’s on a hare-trigger, rather than avoiding triggers just because it’s wise to not push it. But if I got to how things are right now with no major meds , I’d be so thrilled and relieved!
As far as being off meds, there is one that doctors recommend always staying on, even in remission, because it prevents new flares. That one’s plaquenil, and by itself it only really works in mild cases or like I said to maintain cases that are mostly in remission. Some people can’t tolerate its effects even when they are in a very active phase of their disease. About meds, people often take them to the extent they need them to control it and achieve at least a plateau, and within what they can handle… Many of them are awful, but letting the disease run wild is at least as awful and also dangerous! But if the meds can put you in a decent remission that’s the perfect time to try to get off and stay off the toxic meds! Does that help explain better? Good luck!
here is definition of remission
a temporary or permanent decrease or subsidence of manifestations of adisease.
a period during which such a decrease or subsidence occurs: The patient'sleukemia was in remission.
So how i understand it that all your test will not show any active lupus. I believe at times i have gone into it but without taking the tests i am not 100% positive as to medically. I felt normal!! no aches or fevers, i had energy. I was healthy feeling!!
But it did not last very long for me. It was kind of cruel in way....to feel so good and normal but it also made me realize that i been not normal for most of all my life.
Of course some medications are worth taking especially if it saves your life, or even just helps with pain!!
I personally would find it amusing as white male to finally feel just a tiny bit what so many others feel every day for all of their life. I would hope it enlighten them to blights of those in the minority be it due to race, gender, or what ever, religion, where one lives, clubs etc...would help them to have empathy for others.
My brother was sick with autoimmune disease that was never fully diagnose....he had something clearly all his life and maybe was more than one disease...but like many men with lupus he was much more ill than most women with lupus.
I doubt he ever even consider himself as minority though it was known even back then that men were with lupus