Lupus and lethargy

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Does anyone with lupus have good days and really bad days with lethargy?

I'm on several meds recently started azathioprine too and thought it had finally kicked in last wk (as I finally had a better wk and could do everyday things ok) but today am so drained and fatigued even getting off chair a massive struggle.

Anyone have this and any suggestions on if anything can help.

As I have a 3yr old and a 6 month old and it's hard to even get off hair some days! X

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5 Replies

  • Posted

    Hi Sara,

    I know what you mean!  My 83 year old Mom has Lupus, and has always been extremely active, was diagnosed with Lupus at 79, and has been hit hard with it.  She is going through the extreme fatigue.  I on the other hand have Sjogren's. similar to Lupus, not just the dry mouth and eyes...it is pretty extreme, as it has gone to my organs.  And now they think I also have Lupus on top of it.  The fatigue and lethargy is unbelievable.  My glands get swollen so often, so our immune systems are very important to TRY to keep on top of.  The only thing I can tell you is what I do, and what I try to keep on top of my Mom to do, to keep from getting sick and run down as much as possible.  We take a lot of vitaimnes and supplements.  Most importantly is B-12-1000, B-6-100, L-Lysine 1000mg, Magneseium 400, Vit. C 1000mg - X-2 a day, D-3, 2000,  a really good 50+ Multi Vitamin (weather you are 50 or not) a really good Calcium 1200mg a day.  And anything else you can find that can boost your immune system.  The D-3 is important for anyone, but for us especially, also known as the sunshime vitamin. 

    ?It is important for us to keep from catching colds, flus and such.  I also have RA, and have been in a real doozy of a flare up over the last 3 months.  Just saw my RA doc last week.  I can not take the one med that most take, as it caused damage to my eyes in the first 3 months, so I was on Methotrexate for a year, did not work, only caused my hair to break and start falling out, skin leasions, and over all fealt sick, and it did not stop the progression of my RA, so stopped that.  They put me on Imuran about a month and a half ago, so far have not noticed much difference, so instead of increasing the dose...had to wait for bloodwork...they gave me a shot of kenalog (sp) and just this weekend and feeling a bit better.  My overall body pain is down, and I am not as tired this weekend.  So, I am hoping it has given me the kick start I needed until they can either raise the dose, or give the new med more time to work. 

    ?I sure wish you luck!!!  I swear by the supplements and vitamins, as I have been lucky so far with any colds or flus.  If we get sick with those, we would be down for a longer time than most, and with our immune systems being what they are, we don't know what organs or nodes would give us trouble.  My RA doc really makes sure to focus on me staying as healthy as possible, he does not want to see me get colds or flu.  So, I can only pass this on to others with this crazy thing we have! 

    ?I hope this helps some!  God Bless!!

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    • Posted

      Hi,

      Thanku for your reply.

      I am going to try the vitamin b then, I am already on calcium and vitamin d from rheumatologist as I have a vit d deficiency and have done for several years.

      I was previously on hydroxochloroquine before having my first baby and this worked well. Since having my second 6 months ago I have been in a flare up so started back on it but with little effect therefore starting the azathioprine. Just couldn't get my steroid dose down and was piling weight on as get so hungry.

      It's so hard as even when u sleep it makes no difference I've just slept about 9-10 hrs and feel just as bad as when I went to bed and that's hard to explain to people don't think they quite understand that it's not just that u 'feel tired' it's totally different.

      Am going to get some vitamin b today! Fingers crossed. My son wants to go out today and it's taking all my energy to just lift an arm! Feel useless at times X

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    • Posted

      Hi Both.

      Yes, I have good and bad days too. I am still taking the hydroxychloroquine, but now on azathioprine as the side effects from the methotrexate were terrible. I have managed to come off the steroids for my last flare up as they kept me awake all night and I am sure they were making me depressed.

      I called myself 1 hand works to start with, but it is more like two fingers on one hand and three on the other now. My last flare has took away so much function in my hands its unbelievable. I couldn't even open my right hand for weeks.

      Unfortunately lupus has now cost me my job but I have come to realise that my health is far more important, and I now I just get by with what I have. I have enough problems with my lethargy and fatigue, but you must be something pretty special if you can look after two young children as well, so keep up the good work! It is pretty hard to get meals in for yourself when you have kids, let alone try to eat healthy, but while the weather is good, try to get as much fresh fruit and veg as possible. Plus, don't be so hard on yourself, as it makes you feel worse. I was like that at work, trying to push myself, and it ended badly, so give yourself a break! I am now on 150mg azathioprine and it is taking a while to take effect, but I couldn't cope with the sickness/diarrheoa of the methotrexate, so no other option really.

      Chin up and carry on, we are all in this together!

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    • Posted

      Thanku that's really good to hear! I probably am hard on myself I just feel bad when my kids have to miss out on things because of me. I just tried to force myself out but ended up turning back round in a crying mess! I feel like the worst parent ever when it's like this. I just have no energy and my body feels heavy.

      I only work 2days a wk now ( on a years maternity leave currently) haven't been able to work full time for several years due to my health.

      I can cope with pain it's just this fatigue I find hard it's a killer!

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    • Posted

      Same with me initially. Fatigue came so quickly at work, painkillers temporarily took the pain off, nothing stops the fatigue!

      I did loads of relaxation and breathing techniques, but I guess you won't be able to do that with young children around. So yeah, you have to be a bit easier on yourself, as if you get worked up, it does make the fatigue worse! I couldn't sleep at night, even though I was dog tired, so I just read Harry Potter! Daft yes, but I found if I read something too interesting or challenging, I struggled. So I went with easy reading.

      Good luck, let me know how you get on!

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