Hi
I have had Lupus for many years and always been tired, but recently the tiredness is a constant awful fatigue which is debilitating. I am so reluctant and very scared to take Hydroxychloroquine which my consultant suggests because of eye damage!! I have tried aerobic exercise and healthy eating but nothing helps 
any suggestions or other medications that could help me?
Thank you.
I don't think the eye problems are that common but could be wrong. The fatigue seems to be the hardest thing as there's no specific treatment for fatigue itself. I know how u are feeling I'm worn out from doing nothing at all! Constantly feel like I've been beaten up.
I was on hydroxychloroquine before my first child with really good effect. I'm on it again after my second baby but doesn't seem to be helping me as much this time so also on azathioprine which I was scared to take but thought I need to try it as can't function.
sorry to hear of your plight, but fatigue is a very difficult one to overcome.
I have suffered with profound constant fatigue since I became ill with lupus over 15 years now. nothing helps even when I am on steroids it is the same. I have been on Hydroxychloroquine for a long time now and still the unrelenting deep fatigue persists. I have tried everything to get rid of it but nothing helps, exercise just makes it worse and exhausts me. My life is very restricted because of my fatigue. My consultant says there is nothing that can be done I just have to live with it.
I hope you can get some relief.
Hi
I don't have lupus but Bechets and suffer from constant fatigue. Too much exercise causes even more problems but I try to get out for short walks and yoga when I can. Pace is part of the solution and I often have to rest at some point in the day.
Hydroxychloroquine does help and ive been on it for 6 years without any problems. I take many other drugs that have scarerier side effects but without them life would be all but impossible. Its always a trade-off and thats personal.
I do hope you get some relief soon.
Yes thats very true but I am really worried about the side effects to the eyes. I think I have been reading too much on the internet! Thank you.
You can have eye issues but that is very rare and they monitor your retinas very closely while on hydroxy. My Rheumy here in AZ has been in practice for over 30 yrs and has never had a pt with retinal problems from this drug. That's what convinced me to take it. The benefit outweighs the risk. I did have GI issues but they settled down after two months. Good luck I know how bad this fatigue is. It's a constant battle.
I have awful problems with fatigue, too, and found that these improved some when I started hydroxychloroquine. I am still taking it at a very low dose - one quarter of what I started on. The danger to your eyes have to do with the accumulated dose because it builds up in your eyes. My rheumatologist began to reduce my dose after the total amount, over about a decade, reached 10,000 mg. So far there is no sign of damage. It is very hard to weigh side effects against the benefits of a drug. I hope you find something that helps you.
Ive been on Hydroxychloroquine for 20 years no eye problems at all, my Consultant sends me for check up every year. Have you had your vitamin D levels checked? Low levels, common with Lupus, increase fatigue.
Hi, thank you for your reply. Very pleased to hear your eyes have been fine on the treatment. I only wish I could allow myself to try as I am desperately tired but I know I can't risk the eye damage, some of the stories I have read on the internet really scare me! I was found to have low levels of Vitamin D but unfortunately the tablets have not actually helped my fatigue. I will keep exploring other options although there does not seem to be anything I have read
Hi fifi
Sorry to read of your fatigue problems. Sadly so common and profound with these illnesses. Have you also been tested for anaemia as that is a cause for fatigue and can be easily treated?.. Our treatments can help with it and the side effect of eye problems should be checked yearly at your local hospital. Your GP or Rheumy can arrange this. As a sufferer of it myself I often wish more could help as it affects our lives too much. X
Hi, thank you for your reply. I am on iron tablets and vitamin d from the doctors and I also take a really good b vitamin but unfortunately the fatigue is still here!!! It really does affect our lives, I really am at my wits end!! I have made a firm decision not to take Hydroxychloroquine because of the eye effects but now realize there is nothing else that can help! I am going to try and lose weight, although I am not big as I have read that keeping weight on the lower end helps with Lupus fatigue!! I have also turned Vegan and am going to try to do more exercise. It is so very distressing feeling like this and especially as both my friends and family do not understand because apparently I look well!!!!! Keep well x
I respect that you have adopted a vegan diet but I would say that protein gives me energy. I eat very sensibly - lots of veg fruit and salad but also protein. Unless you really dislike - I would add protein back. Lots and lots of water too.
Sorry to hear of your increased fatigue. Diagnosed sle 1995..so ages now but also have RA overlap. I have been on a primarily plant based diet for about 18 months but in the past three months I have reintroduced eggs and this week I have decided to reintroduce fish. The problem for me has been getting enough protein, especially when I am really fatigued and making food is a nightmare..the oily fish is more for my brain which I am having an MRI scan next week. Years ago a medical professional talked about fatigue pacing...sit for ten, walk around for ten, sit for ten..at the time I thought she was barking mad as I was hardly able to move! I think plant-based has helped me to a degree but also loosing weight, if you consider the stress of excess weight requires more energy which makes you more fatigued! I have started Leflunomide this year and my fatigue levels have increased, but the better joint movement outweighs it really. Well controlled sle is an important key to keeping symptoms at their least pesky, because inflanmation causes fatigue. The thing about people not understanding is I am afraid a universal experience of lupus sufferers, and so you are not alone. Tbh after 21yrs (but it triggered 1984 - yes 11yrs to wait for diagnosis!) I still get upset when people who know I am actually really very ill say 'great to see you looking so well'..i think.."are you speaking to someone behind me, because the last time I looked in the mirror I looked awful and I feel like rubbish'
The difficult reality is that unless you suffer from fatigue you cannot understand fatigue. I used to say "it's like having a hideous dose of flu...permenantly" this sometimes helped people get a bit of knowledge.
The correlation between looking well and being ill isn't easy for the brain to compute.. look ill = ill or broken leg with cast on = easy to compute. Look well not well = ???? it doesn't match up.
Try and sit down with your family and friends and couch your fatigue in 'you know how you feel totally wiped out with flu and you just want to sleep, can barely function? (you should get a yes because most have had flu so can relate), well the fatigue I experience is like that but multiplied by ten, even though I look amazing! Somedays my fatigue may be at a level 2 or 3..then I can do more, but the thing is it can go from a 2 or 3 to a 10 in an instant. I know it is hard to grasp and understand, it is for me, but I will try and tell you if it is really bad. When it is really bad, you know the best thing you can do no matter how well I might look..is just understand, love and support me...and fend others off who don't understand"
This might help give them a sense of understanding, and actually gives them a feeling of helping you, because lupus is awful and they will be struggling to get their heads around it literally because of the eyes see one thing which computes as 'well'.
We need people to be kind to us and try and understand.We need to be kind and appreciate the lost in translation bit. We need to be kind to ourselves and rest when we need to. Realise that somethings can be left undone and it is okay. Learn to prioritize what does need doing and do what we can.
Having lived with Lupus for so long, one of the major things I have learnt...is to say "no". Managing our day and expectations depending on current fatigue level is a skill worth cultivating.
Sometimes getting from the bed to the ensuite is a major achievement that needs 'celebrated' within ourselves.." Nailed it!" or "Yes, did it!" Gives a little feel good booster shot..for getting back ☺
Thank you for your reply. I need to read up more on the protein side of things because I read somewhere that adopting a vegan diet would help lupus!! I suppose it is what works for the individual but, it is very hard getting there! I have tried so many things diet and exercise wise but nothing seems to help me. I do agree about the weight issue as the only time I have felt significantly better was when I was slightly underweight which is 2 stone less than I am now! Take care, and thank you again for your kind reply. 
Hi fifi6 ,
I'm sorry to hear that you are struggling with fatigue. For more suggestions on managing fatigue, please have a look at our blog article at lupusuk.org.uk/managing-fat...
The eyes were affected more regularly by chloroquine than hydroxychloroquine. Here is what 'The Lupus Encyclopedia' by Donald E Thomas Jr, says;
"Over the past decade, more cases of hydroxychloroquine retinopathy have been reported. However, it is still suggested that it probably occurs in only 1% to 3% of people when it is taken for more than 7 years. The risk of developing retinopathy coincides with the cumulative dose of hydroxychloroquine.
"Retinopathy from hydroxychloroquine is very rare under a cumulative dose of 1,000,000mg of hydroxychloroquine. Since most people who have lupus take 400mg a day, that calculates out to be 7 years of hydroxychloroquine, meaning that it would be very rare to ever develop retinopathy after taking it for 7 years or less at this dose.
"If [all current recommendations] are followed closely, then it should be rare for anyone to develop any significant eye problems from hydroxychloroquine. This will help keep its place as the safest medicine that doctors have to treat lupus. In fact, your ophthalmologist should detect any problems before you would ever notice any visual changes at all. When caught early, hydroxychloroquine retinopathy usually causes no symptoms whatsoever."
Take the Hydroxychloroquine! Have your eyes regularly checked - the hospital book me automatically. Why suffer - it has given me back my quality of life. If we worried about all possible side effects ....... do it! I felt better within a few weeks -energy back after 2 months -
I really understand what you are saying. I have quite a poor quality of life energy wise! I would love to be able to run and exercise again but my energy only allows me to walk the dogs and look after the house on a good day!! It must be wonderful to have your life back and more energy. Well done you, keep well.
Ps - try VitD SPRAY plus Vit B12 spray - Consultant recommended
I do take tablets but could always have a spray too, will give it a go. Thank you.
Hi fifi
Sorry your still having fatigue problems despite taking things that can help like iron. Is your blood being tested and has the haemoglobin improved?. Sometimes we can have absorption problems and iron is best taken intravenously to gain benefit from it. I agree with Cas that going vegan is not going to help your energy levels. We need a healthy balanced diet to function well, specially protein for energy. Try the Hydroxy, any problems with it will be picked up quickly and may not happen to you. We are all different and you could be denying yourself improvement in quality of life. Good luck X
Hi misty
Thank you for your reply. My iron is always lower even on high dose tablets so will definitely look into seeing if I can have it intravenously as you suggest!! I'm trying to get my protein from green vegetables and lots of beans and lentils. I also have lots of soya products which are meant to be full of protein so will see what happens with the energy by trying to consume more!! x
What a bummer. I've had to have infusion for iron which did help a lot. I also have to be sure to get red meat in my diet. Be advised soy can actually be a problem when it comes to iron; I simply cannot eat the stuff, it makes me feel loads worse. You're always going to read about things which are 'supposed' to help but pay attention to your body - I forced myself to try and go veggie and nearly hospitalised myself twice; my body cannot digest plant protein. I wish you luck!
Hi Silvergilt
Thank you for replying. I am now so confused!! I went vegan for ethical reasons mainly but I did research that it could help lupus too!! I'm now worrying that I am unable to digest plant protein too as this fatigue has definitely become worse since going vegan. I do have an awful lot of soy but really cannot give this up as well as its quite hard trying to keep up with vegan diet without it!! When I asked my Consultant they said diet played no part in Lupus!! I will have to do more research, but I find everything I read so contradictory!! Good luck to you too!
As I said, research is well and good but there is a lot of contradiction because what you read and yet what actually applies to you directly may be completely different. You're right, being vegan without soy is nigh on impossible...so I stopped trying and instead shopped more locally for my meat. I know where the meat I eat is coming from and I raise my own chickens for eggs, so I go with that now, and definitely don't have anywhere the problems I did before. I now listen to my body, even if that flies in the face of common advice.
I wish you clarity and energy!
Soy isn't without its problems. I'm not saying soy is entirely bad - but this explains what I mean:
articles.mercola.com/sites/...
You can't digest non-fermented soy so it can't do you any good. Asians don't actually eat much soy, and what they do eat is fermented: miso, nato or tempeh. Or eaten in fish soup with loads of minerals in them.
What is probably happening is that you aren't getting anything like the protein you think you are - and when you are ill, you need protein. This is a good resource for ideas for protein sources other than soy.
health.com/health/gallery/0...
but do consider going veggie at least - lots more sources of protein there.
Thanks for the above advice. I really do not know what to do but i have been very reluctantly considering going back to being vegetarian if there is evidence it will help with fatigue!! So much confusion with Lupus as to know what to do for the best....It drives me mad trying to find information and advice that might help.
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