Lupus Fatigue - What helps? Does low-dose Prednisone?

pearless

Mott
I have been on and off prednisone for the past 16 years. Doses as high as 60mg and low to 5mg what Im on now. I now can not take more than 10mg because it causes me to be a real B..... I dont like the angry feeling I get and I cant sleep. When you take it over long periods of time you could end up with prednisone induced osteoporosis like I did. It can cause cushings syndrom (you gain alot of weight around the belly, face and back of neck) had that 4 years ago. It also makes you really hungry. Might I add these effects take along time to happen so short on and off is good. Unfortunately I cant maintain off of it. It does help with the swelling and tenderness at times but does not take it completely away. The fatigue Im afraid has not left me for the past 8 years. Keep track of your dexa scans and have them done every year. I do what I can when the fatigue is not as bad but you need to rest when it is.
pearl

Glojer

Mott, I take 4mgs. daily. I have for about 2yrs. now. My rheumy says anything under 5mgs. should not have any of the lasting side effects. I worked my way down to 3mgs. at one time but finally settled on the 4mgs. for lasting effectiveness. I am very fortunate in that I don't have any problems with anger or moodiness. I also don't have the weight gain, I have actually lost weight after being on it. I also exercise as much as possible to help with the osteoporosis factor, which my dexa has been good. Prednisone really helped my energy, but what helped me the most for energy was getting my thyroid under control.

Glojer

VeeJ

Hi. I struggle with chronic fatigue, too. Do you get copies of your ongoing labwork? Glojer mentioned thyroid; I think thyroid tests are "add-ons". And what about anemia?

Do you take anything additional when you have colds & bronchitis? If you do, any potential for sleep disruption due to those meds?

I go thru periods of severe sleep disruption, but find that even a 15 minute nap affects that night's sleep adversely. I took Ambien years back, just to reestablish a sleep pattern (one every other night for 2 wks), and just that small amount really helped. Plus I have to keep on top of inflammation, else pain wakes me up. Once you quit Mobic, have you tried anything else?

I shun caffeine except for a few cups of coffee in the morning. One cup at night seems to do me in sleepwise. Anyway, I hope you achieve improvement soon. Sincerely, Vee

mott07

Thanks everybody. Your advice is really helpful. I'll definitely look in to my thyroid and, while I know I've been tested for anemia I'm not sure how recently, so I'll follow-up there too. I'm supposed to get a bunch of blood tests back tomorrow and will make sure those are both included. My prior doc did give me copies of the tests, but I'll make sure to ask my new one to do so too. That was really good advice.

No, I never tried any other NSAID after the Mobic, since the acupuncture controlled my joint pain so well. Also, everyone was hesitant because of the ulcer (I also have Acid Reflux Disease so they're particularly concerned). Do NSAIDs help control fatigue too? If so, I would definitely be willing to give them another try.

It seems that the prednisone is different for everyone and you can only cross your fingers. I am glad to hear that if I can get my dose down to 5mg/day (and still have a therapeutic effect) that the longterm complications can hopefully be avoided. We'll see how it goes.

And, no, I've never had any trouble sleeping. Except when the bronchitis, etc. was really bad, I sleep like a baby and generally for about 10 hrs a night. I was wondering if it could be Chronic Fatigue Syndrome on top of the Lupus but don't know much about it. A doctor did, in fact, diagnose me with CFS like 10 yrs ago, but I'd assumed it was just a misdiagnosis of Lupus. There doesn't seem like there's much they can do for that besides. Has anyone tried B-12 injections? I heard that can help energy and mentioned it to my doctor, who's offered to try it if I want. Thoughts?

Thanks again.

sherryrenee0423

I've heard from the Fibromyalgia board that B-12 shots can make a difference. You might want to try taking a B-12 vitamin to see if that does any good first.

pearless

mott
I was diagnosed with chronic fatigue before the lupus diagnosis and because at the time the ana and other labs were not as readily available. Lupus is known to cause severe debilitating fatigue in some people, like me. I also suffer from thyroid issues but mine is hyperthyroid. I also have pernisous anemia from the lupus too and I suppose that adds in the factor. My fatigue is to the point that some days I dont even have the stamina to change the channel on the TV with the remote control.
pearl

signlady08

Seems to me that the Tramadol perscribed to me helps my fatigue GREATLY. It actually makes me feel normal, takes away the pain & gives me energy that I need.

sherryrenee0423

Prednisone gave me so much energy, but I didn't like the nasty side effects (hungry all the time, severe acne, moody, itchy, etc), but side effects are different for everyone.

I chose to start Imuran. My rheumy said it can give the benefits of steroids without the nasty side effects, so you might ask about that class of drugs. Steroids are more aggressive than Imuran...it's kind of like the middle ground. I started it a few weeks ago (it takes a few months to get the full effects like paquenil) and me and my fiance noticed that I had more energy last week.

Steroids like prednisone do offer immediate relief though, that might be why your doc wants to put you on it.