How many of you are currently on treatment and still feel fatigue and weak at times. I started Cellcept about 1 month ago. I also am on Prednisone 10mg , Plaquenil and other non lupus meds. I still work full time. But when I get home I am totally exhausted. All I do is get my shower and plop on the couch to rest in order to get ready and rested for the next day. Should I be feeling better with all the meds I am taking? I have a follow up appointment with my rheumy on 6/26/14, Guess I will have to talk about this with him to see what we need to do.
Also question about C3 and C4. I have noticed that my C4 level has been consistently dropping. And my C3 is on the lower side also. But both still within the normal values according to the mayo lab, but on the low side. The normal range for C4 is 14 to 40, and my level is at 20. Any of you have similar experiences?
Thank you all for being so helpful and open about sharing your experiences. It really helped me when I had to start my Cellcept. I was really nervous and you all that replied made me feel so much more at ease about starting the med. Thank you!
I am in the same boat as you. I was diagnosed about 2 years ago with Lupus. I am on Prednisone, Plaquenil, and Methotrexate (up until yesterday). I work full time also and often on my drive home I feel myself nodding off. When I get home I am done for the night. Weekends I play catch up trying to do all the household chores that I don't have the energy for during the week.
The past few weeks I have been more tired than normal, to the point I can't really function. Didn't go in to work yesterday or today. I went to my rheumatologist yesterday and she said that I should not be feeling that way and she was going to take me off the Methotrexate and start Imuran. I know the Imuran can take awhile (up to a few months) to feel the effects, maybe the Cellcept is the same way? Where you feeling this fatigue before starting the Cellcelpt? How long have you been on the Plaquenil (that can take months to feel the benefit)? Does the fatigue seems to come and go? when I get fatigued it seems to gradually get worse until I give in and take a few days off work (like I am today). I've slept about 17-18 hours a day for the past 2 days. I guess my body really needed that! I would definately mention the fatigue to your doctor, and be sure to rest when you can. I hope you feel better and have more energy soon. Lupus seems to be a trial and error game....hope you find what works for you soon!
Heidi I have been on Plaquenil for about 2 years now. The Cellcept about a month. My fatique comes and goes. I had to have my rheumy fill out FMLA paperwork for my job because I was missing quite a few days of work a month. Yes, the fatique has always been a problem for me. When he ups my prednisone I seem to get a energy boost but when I start to taper down I start to feel blah again. I have been on the Imuran in the past and i couldnt take it, made me ill. Hence starting the Cellcept. I see my rheumy in about 2 weeks, guess I will discuss this with him at that appt. I hope you start to feel better yourself Heidi!
Heidi said:
I am in the same boat as you. I was diagnosed about 2 years ago with Lupus. I am on Prednisone, Plaquenil, and Methotrexate (up until yesterday). I work full time also and often on my drive home I feel myself nodding off. When I get home I am done for the night. Weekends I play catch up trying to do all the household chores that I don't have the energy for during the week.
The past few weeks I have been more tired than normal, to the point I can't really function. Didn't go in to work yesterday or today. I went to my rheumatologist yesterday and she said that I should not be feeling that way and she was going to take me off the Methotrexate and start Imuran. I know the Imuran can take awhile (up to a few months) to feel the effects, maybe the Cellcept is the same way? Where you feeling this fatigue before starting the Cellcelpt? How long have you been on the Plaquenil (that can take months to feel the benefit)? Does the fatigue seems to come and go? when I get fatigued it seems to gradually get worse until I give in and take a few days off work (like I am today). I've slept about 17-18 hours a day for the past 2 days. I guess my body really needed that! I would definately mention the fatigue to your doctor, and be sure to rest when you can. I hope you feel better and have more energy soon. Lupus seems to be a trial and error game....hope you find what works for you soon!
Your c4 is right in the middle so that’s a good thing:) it’s definitely not low … When C3 &4 are “abnormal” low ,meaning beneath the “standard” range it’s referring to lupus disease in an active state. There’s a great amount of easy to understand information about these levels and what they can mean online but if you’re really worried give you dr a call… as far as fatigue I always love Vitimin B complex believe it has all the b’s in it… im now physically disabled from lupus and my overlapping diseases as of last April but before that I was a very busy hair stylist/colorist so I definitely needed to have lots of energy though out the day. I was on your same meds plus at the time so maybe the Bs could help you to?!?good luck:)
I don't know if it helps to know there are others like you, but I also struggle with fatigue, although my docs tell me the meds should be addressing it. I get continually asked if I'm getting enough sleep. I also work full time and by the end of the work week (and the overtime) I feel like a limp dish rag. I wish I had better answers. I hope things get better for you and if you get any answers, please share. :)
Reading the comments re: fatigue just reinforce that unfortunately comes with Lupus. It sounds like no matter what meds we are on. Getting plenty of rest/sleep at night helps, but most of us struggle with that too. Pace yourself, cut back on work hours if you can. God Bless!
being fatigued is common regardless of what we take i talked go my doctor and he says vitamin d helps with energy so i take a vitamin suplement i get from sams club their chewys and taste pretty good plus i take 50.0000 btu.
I don't believe there's much to be done about the fatigue, even on those rare occasions when I do get some solid uninterrupted sleep, a rarity in itself I still wake up exhausted its one of those never ending battles.
In addition to all the comments, make sure you're hydrated! Lupus is dehydrating, and its important to drink plenty of water. I also take Vit D daily, and I work at least 9 hours, and generally work through my lunch and have a commute home. When I get home, I have days where its not enough for me to just rest in the recliner, I have to lay down - flat. I have to go to bed. I can't fight it, it just seems to make it worse.
Fatigue and Pain, are just commonplace for me. I don't complain about it (much lol) but when my husband sees me limp, he tells me to get the ice pack and he'll help me put it on my foot and elevate.
My hubby is taking Cellcept, prednisone, plaquinel and lisinopril. He is always tired. He fights to stay wake around 6 at night and then come midnight he is wide awake. He takes tramadol when the pain gets to much and he will sleep so hard that he’s even more fatigued. I would like to say we have found something to help with the fatigue but we haven’t. With 3 boys under 6, we does his best not to miss a beat but there are some weekends where he just can’t do anything to push past the fatigue.
Best of luck