Hey. I was wondering has anyone any.tips to help not being tired all the time, i have sle,vasculitis and small fibre peripheral neuropathy

[biddy75]

[SarahHeney]

Firstly get Vit D levels checked, and checked for anaemia and thyroid probs. There may be a cause other than plain old lupus fatigue. I have been both Vit D deficient and anaemic at different times and the fatigue is crushing. Also are you on Plaqiinil/Hydroxychloriquine? That isthe lupus drug that is supposed to help fatigue x

[biddy75 in reply to SarahHeney]

Hey Saraheney, im on hydroxy 200mg daily and mycophenalate 1 gram three times daily, also mepacrine, im on vitamin d tablets, i get tired mid afternoon,drained in fact, im on a pain management program at the minute to help find ways to cope with this

[Barnclown]

I agree with Sarahheney, and can add:

I'm 60, with infant onset lupus, that went largely untreated until 3 years ago. I have significant lifelong circulation probs and am being watched for vasculitis because I get vascular rashes etc (I have simultaneous raynauds & erythromelalgia inc peripheral neuropathy symptoms, plus ehlers danlos paroxysmal haematomas). I also have a mild heart murmur and persistently relatively low blood pressure

My lifelong version of chronic persistent fatigue (combined with cognitive impairment & vertigo- all 3 flaring together according to how effectively I lifestyle managed myself) plagued me until FINALLY, last year, I added low dose 4 week tapers of prednisolone 10mg to my treatment plan (400mg hydroxychloroquine daily- which only v slightly reduced my fatigue etc). After my fatigue etc responded dramatically to several of these low dose pred tapers in 2013, rheumatology decided to try adding daily mycophenolate as of jan 2014. My fatigue etc has responded so well to 400mg hydroxychloroquine + 1000mg myco daily, that these are considered the key daily long term therapeutic oral meds in my treatment plan. I consistently, for the past 5 months, have had more energy & stamina, and felt more alert, stable, resilient & ALIVE than I have in decades....with, SO FAR, no lasting problematic side effects.....what next, I wonder?

So, your ? interests me. I'm curious re your treatment plan: what oral meds are you on? Also, I'm guessing that, like me, over many years, you've conscientiously but unsuccessfully tried to reduce your fatigue via all the usual recommended life style management (pacing activities, taking naps, meditation, regular exercise, anti inflammation diet & supplements etc etc)?

Take care

[mstr in reply to Barnclown]

Hi Barnclown, love this reply re pred tapers and could do with more info on this as the dreaded fatigue has hit hard again past few days.....PS: will also pm to your message tonight xx

[Barnclown in reply to mstr]

Thanks! And your reply, below, is helping me a lot! I've just posted another reply below, inc some info re my version of pred tapers....xO

[mstr]

Hi Biddy, Can totally relate....as have been hit hard by the fatigue past few days.....as I think my steroid injection is wearing off (who knows really?). One of the things to do if it hits hard is 'just go with it'. This is the hardest thing to do as in our mind we have another plan of what we want to do for the day. Yesterday I was sooo frustrated for the same reason as had plans in my head but my body didn't want to play....I often find the fatigue can suddenly and seemingly for no reason just clear.....often mid afternoon. So I too plan to discuss this with rheumy at next appointment as I did with the doctor yesterday. I often find GP's really just defer to consultant's opinion and at my GP review yesterday we went over my bloods and had blood pressure done. Maybe my interpretation of the word review is slightly different;)! I find Barnclown's post interesting as it talks about pred tapers for which I know very little and it sounds as though it has helped. Yes so on the whole I would speak to your rheumy about the fatigue as to me when that hits it is debilitating. At times I find relaxing music helps as does meditation (mainly to ease the frustration of being so dammed fatigued)......but at other times when very fatigued even that seems a chore. It is then I question is this all in the mind.....but when it suddenly lifts I know it hasn;t been and has just been the dreaded symptoms rearing it's head again. Hope you get some help soon re this. x

[biddy75 in reply to mstr]

Hey mstr, my tiredness comes in the afternoon, ive just started back to work and am afraid i won't be fit for it, its part time work

[mstr in reply to biddy75]

Hi Biddy....I can also get it then too. The other day I was fine in the morning. Went off with a friend for a coffee and a very short stroll around a very small market town square. Wow fatigue hit really hard. It did the same when I went to Morrisons supermarket last Saturday....got to the end and just had to sit down on the bench....it's like hitting a big brick wall. So blooming debilitating. Yes....I'm not working at the mo and would desperately like to go back but it would have to be something that fitted in with a chronic condition....eg few hours couple of times a week or 1 day a week......not many jobs like that out there! Hope you get on ok at work xx

[Barnclown]

I can TOTALLY relate to everything mstr has posted above!

Re these low dose 4 week pred tapers:

My rheumatology clinic permits 3 per year. I start at 10mg & drop by 2.5mg each week. I can still take these as necessary while on daily hydroxy+myco. As I understand it, if, for whatever reason, a flare develops, even of my fatigue/cog imp/vertigo, I can make the choice to start a taper. My gp has me keep a taper's worth of pred tabs at home 'just in case'. But, I do continue to more or less comply fully with the lifestyle management routines I've relied on most of my adult life.....AND in 2014, so far, I haven't needed to take one of these pred tapers......YET.....

My impression is, that how I respond to these pred tapers is as much a sort of diagnostic guide as anything....but I'm very much in the early years of understanding my version of lupus!

[biddy75]

Hey barclown and mstr, i am on hydroxy 200mg, mycophenalate 1gram three times daily, mepacrine 100 daily, 10mg prednisolone, also lyrica 100 daily palexia 300 vit d cetrizine 10 sertraline 50, im also doing a pain management program to help cope with all this my tiredness comes mid afternoon and I am drained for rest of day

[Purpletop in reply to biddy75]

In might not be this but it seems to me that you're taking medication that causes sleepiness - lyrics, sertraline, even mepacrine. I don't know much about the other drugs you mentioned but by and large drugs that cause sleepiness are prescribed to be taken at night so that to minimise the effects. As you experience the slump in the afternoon, what medication are you taking around that time, if at all?

Another suggestion would be to increase the amount of Plaquenil to 400mg per day, instead of 200mg as you take at the moment. But you need to bring the problem to your doctor and get him to focus on resolving it, instead of saying 'we'll, it's lupus, what do you expect".

[biddy75 in reply to Purpletop]

Hey purpletop i take the mepacrine at lunchtime so it could be it, how would increasing the plaquneil help. It was the dermatologist that suggested it, my main problem is neuropathy and vasculitis, from the knees down don't work right

[Purpletop in reply to biddy75]

The issue you need to address is whether the tiredness is due to medication or due to lupus. Once you get an indication, you can then work on the cause. I would start by asking your doctor who prescribed mepacrine whether you can take it at night instead. If so, give it few weeks to see if it makes a difference and if it doesn't, then it is more likely to be due to lupus itself, which is where increased Plaquenil comes in. One of plaquenil's effects is the reduction in fatigue. If the fatigue you're experiencing isn't caused by medication and you're already on a dose of Plaquenil, there is an argument that the dose is not sufficient to improve the fatigue - hence the suggestion to get to the drug's top dose. For information, I'm on 400 mg Plaquenil per day and 1 g myco per day too. The immunosuppressant (mycophenolate) makes me low level tired but nothing like the level of fatigue I experienced before taking Plaquenil.

Having said all that - we are all different and react differently to drugs. There are people on this forum who are on top dose for Plaquenil and still experience fatigue. All I'm saying is that there is an option and unless you try it, you won't know whether it would work. Discuss this with your lupus consultant and see what he suggests - he's best placed to look at your treatment plan and suggest improvements but it doesn't hurt to have suggestions yourself.

[biddy75 in reply to Purpletop]

I no, id try anything, will start by changing mepacrine to night first, u have good advice, i get tired being tired lol

[Wendy39]

Hello. I can totally understand your frustration with your fatigue. I was diagnosed 6 months ago and the fatigue was extreme and the worst symptom to deal with and accept. I have now been on the hydroxy for 6 months (200mg twice a day) and it is much better. But I am still not back to myself 100%. I am however waiting for blood tests for anaemia and Vit B12 deficiency. So maybe the problem does lie elsewhere and not totally with the Lupus. I am afraid I haven't found any magic answers to the tiredness, except to give into it as much as possible. I have to go to bed in the evenings, normally the same time as the children. We had a birthday celebration for a relative last weekend and so I went to bed late two nights in a row, but Sunday I was shattered and in bed by 5.30pm. Good luck.

[onamission]

I could go to bed sleep for 23 hours and still wake up feeling tired thought about getting some energy drinks

[biddy75]

It seems we all have something in common, fatigue, so if anyone has a miracle cure it would be great