Flares come and go, but I think that the fatigue is always around. I'm in remission or at least a period of inactivity.
Thanks Jayne for the update and info. I'm glad the Plaquinil has the SLE mostly managed for you. I wish I hadn't gotten allergic to that one. It really felt like it was starting to work right when I broke out in hives.
The fatigue and joint pain are my biggest issues with SLE, I figure if I can just get those handled I can go into the world and pretend to be normal again... Perhaps that's when I'll be able to adapt the mantra that "I have Lupus, Lupus doesn't have me", becuase right now - it's got me... But then I'm still new struggling through the mental stuff that having this disease and the mandatory lifestyle changes brings. Please don't misunderstand - I'm fighting the good fight every day. I know your post, Oluwa, was supposed to be encouraging, and I hope others in a different place than I'm at can find it helpful. I'm just not there.
Jayne, I can tell you years ago, I was on amitriptyline. Instead of in bed 13-15 hours I was in bed 18-22 hours a day. Perhaps look into this as an option regarding your fatigue.
After that I tried Cymbalta. It didn't work on my pain levels but it did help relieve the situational depression I found myself in having an undiagnosed condition (before I was diagnosed was one of the most difficult times). Treating the depression even though we weren't treating the SLE helped get me out of my flair. The depression was like a cyclone making my SLE symptoms flair harder. I'm not saying Cymbalta is right for you, or even that medications must be your answer. I am saying treatment for your depression will help your SLE, and specifically the fatigue.
Another option to discuss with your doc, and your family... When I was diagnosed in July I was started on steriods to try to get the inflamation down. At my first follow up I let my doc know my concerns, the joint pain and the fatigue. I also made him aware of the side effect of insatiable hunger and eating from the steroid. He suggested Phenadrine for the fatigue as well as to curb my appetite from the steroid. I was a bit taken aback as I had heard all of the negative information regarding Phen-fen back in the day, but my doctor felt this was safe, and a good option. I looked into it once I got home and did my own research on the risk/reward. I have to say, this med is amazing! I get up every morning. I don't even need a spoon to brush my teeth or put my clothes on most days, and I get dressed most days! This was not the case before phenadrine. Most days I would lay in bed, thinking about getting up and getting dressed. Some of those days I would convince myself just to go to the restroom, as once I was up I would be able to keep going. To get out of bed I would have to literally roll onto all fours on the floor and get up from there. Needless to say getting myself to the restroom 7 feet away was about all I couold manage those days. I still find I need to rest and/or nap around 3 or 4 pm, but it is not even remotely the same. I'm not normal, by any means. I still have to take it slow, watch to not over do it, and stay out of the sun, but it really has made a huge diffence in my energy level. Plus even on the steroid, I've lost 10lbs. So, I know this medicine has risks, and side effects... I also know I'm not a slave to my bed today. I know that I've got more spoons because I don't have to use them to brush my teeth.
So I guess to sum up, if your SLE is pretty managed and you're only big concern to deal with is fatigue I understand your hesitancy starting cellcept. One of the biggest concerns as we head into flu season is how will I manage to stay away from all the sick people? I don't look forward to the possibility of hospital visits for the common cold, nor a duration of 3 weeks of sickness for something normal paople handle in a week. Unfortunately, my SLE isn't managed yet, so we'll see how it goes & I'll keep you informed. So far week one is pretty okay as far as direct side effects.
As always, what's right for one, may not be the answer for another. I do love that this forum is available so people can share what is right for them and what has worked. I like knowing the meds I'm considering, or am trying do and have worked for others. If nothing else I like knowing others understand.
I understand... And I wish you the best fighting the depression and fatigue!
Thanks for the advice. I don't k ow what's wrong with me lately. Everything just seems harder. I'm side tracked and self involved. I'm fatigued (not sleepy...which I was a year ago....til I reduced the amitryptaline ). I'm in a downward spiral.
I don't know if it is more my head or my body. Emotionally I am just wrecked...maybe I am depressed.
I'm scared to stop the amitryptaline because I need to sleep...how else can I make the crappy days finish.
Today has been a hard day. I have just felt drained completely, maybe I'm coming down with something. The struggle is driving me nuts. I hate asking for help. Inevitably, because of the unpredictable nature of my Lupus, most decisions about doing and not doing things are last minute. People don't understand my constant answers of 'maybe' when I am invited to things.
I have been letting things slide at home (housework, washing etc) thinking I will be feeling more up to it 'tomorrow', but tomorrow isn't coming. I hate struggling like this, so how can I ask other people to struggle to accommodate me especially when requests for help are all ad hoc and last minute?
My head is buzzing. I don't know what's going on inside it today. Better get to bed and lock it all up.
Still really appreciating your input peeps.