My consultant believes that my symptoms indicate lupus, however, my bloods did not provide a positive ANA result. He has said that I have Sjogrens, fibromyalgia and synovitis.
I have only posted once before when I was unsure of whether or not to start taking Methotrexate. I am having a lot of pressure put on me at work and felt that if I had side effects, I may have to take sick leave. My consultant decided to try Hydroxychloroquine first and I started taking it two weeks ago.
Before i began I had been having extreme fatigue, to the extent that I was starting to nod off whilst typing reports and also twice when I was driving, which has led me to take some time off work. My main issue now is the way that my head is feeling. It feels very other-worldly and I am quite detached from everything. This makes me very anxious and three days ago led to a major panic attack. I called my rheumatology nurse and at first she told me to stop taking it and then we agreed that I would try taking it with my evening meal instead of lunch.
I used to be very active and happy, but now I am a wreck and can't even manage to do the washing up without having to rest afterwards. I don't want to stop taking the medication if I can avoid it, but am finding it so difficult to function, let alone work, whilst feeling so foggy in my head. My vision is also blurry at times, but I had a sight test last week and my eyes were apparently excellent.
I feel very isolated at the moment and am wondering if anyone else has ever experienced these effects please?
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Jasmine22
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Hello I'm not sure about those symptoms as "side effectsof the hydroxychloroquine" but thought I'd reply as I'm just wondering if a lot of it, particularly the fatigue is "simply the lupus" ..... fatigue is one if the hardest symptoms many of us suffer with, and "brain fog" is also very common. Also it's common that our mental health gets affected, and it's not surprising that your likely to feel anxious at the moment
Some general advice that may help you ....
I've been on hydroxychloroquine for almost 16 years and it's really helped me keep 'lupus under control' so personally I think it's worth trying. Keep seeing your GP to keep your health and symptoms monitored, and discuss your anxiety etc with them
Also if you're new to all this, even without a firm lupus diagnosis, I think you'd probably find the information from the charity Lupus UK useful ( this health unlocked group also has Lupus UK officials on it)
With work I think perhaps you need to "give yourself permission to take a bit of sick leave" It could give you"breathing space, and some "recouperation "
Also see the guides to working when you have Lupus from Lupus UK, as with symptoms such as long term fatigue ( even if it's not lupus) your employer can probably help look at how to help you at work ( by law if you're problems / symptoms are substantial and long term they have to help you according to equity law the actual diagnosis doesn't matter)
Thanks so much for your reply. It helps so much just knowing that there are others in a similar position. I think that you are right in terms of the fatigue and brain fog. Mine has been so severe lately that I hardly ever feel awake and it was worsening even before I started the meds. I have always had a need to feel in total control of my head, and as such have never touched alcohol.
I have joined Lupus UK and will take a look at their guides. I used to advise on employment law, but it's always different when you're in the position yourself, of course. They say that they want to support me at work and then give me totally unrealistic targets that I couldn't achieve even if I was in good health. I have decided that I cannot take the pressure right now and I need some time to try and allow myself to rest, so am visiting my GP on Monday.
Hi jasmine, really feel for you as it’s so hard to cope with the fatigue and strange changes in our bodies with these diseases.
It’s hard to know sometimes whether it’s the medication or the disease but as fabwheelie says, a lot/all of those symptoms are also symptoms of the disease and the hydroxychloroquine (after a few months) may well help with that.
I’m on methotrexate and it’s not been as bad as I expected, a little bit of nausea but it doesn’t stop me working - in fact I think after about 6 weeks of starting it, it gave me my old energy back.
I’d definitely take some time off, stress makes these diseases much worse and you’ve got a lot of symptoms, the fatigue (which is awful enough on it’s own) and also coming to terms with these diagnoses. If they get the treatment right, this might be the worst you’ll ever feel and lots of people can lead very normal lives. Hope things settle down soon xx
Thank you for your encouraging words Melba. I am barely able to put my left foot on the ground today, so that has convinced me that I really have no choice but to stay on the meds.
I'm trying hard to not stress myself. I know it makes me feel worse and I just wish my employers would see it. Hopefully the only way is upwards from this dark place.
I haven’t heard of this as a side effect of Hydroxychloroquine- but I would suggest you keep going with it for a while longer as it takes a good 6 weeks to work. One day you will realise you have managed a lot more in a day than prior to taking. Try Vit D spray and B12. Rheumy first put me on that then Hydroxychloroquine - don’t feel too alone - there is always this website and if you have Sjogrens you got to the BSSA website and join up. They take calls if you are worried and can point you to your local support group as they did me. It takes a lot of the isolation and fear out of this awful illness. Best of luck x
Thank you Cas. I think that at first you feel overwhelmed and that nobody else is feeling the weird things that you are. I was on high doses of Vit D, but saw no improvement unfortunately. I will definitely join the BSSA as I think it's important to receive support and be there for others also. I hope you're having a good weekend x
Fibromyalgia is commonly diagnosed in the early stages of lupus. Some symptoms associated with fibromyalgia overlap with symptoms of lupus such as tiredness, stiffness of the joints and increased light sensitivity. The FMA UK website provides information on fibromyalgia and its symptoms as well as useful links for local support networks, advice and over-lapping conditions: fmauk.org/ .
According to The Lupus Encyclopedia, around 20% of SLE patients will also have a diagnosis of fibromyalgia.
An ANA test determines whether or not a person has an autoimmune disorder, it is not sufficient in diagnosing lupus. dsDNA antibodies are specific to lupus. To find out how a diagnosis of lupus can be made, read our blog article at lupusuk.org.uk/getting-diag... or download/request a free information pack at lupusuk.org.uk/request-info...
Hydroxychloroquine can take 3-6 months to exert its full effects. Some people with lupus experience side effects from certain brands of hydroxychloroquine because of different fillers used in the formulation. To learn more about this, read our factsheet on lupus and medication at lupusuk.org.uk/wp-content/u...
It is possible that some treatments for lupus such as prednisolone (steroids) could trigger or exacerbate depression and/or anxiety. We published a blog article on ‘coping with depression and anxiety’ which you may like to read at lupusuk.org.uk/coping-with-.... If you would like someone to speak to, I can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at chanpreet@lupusuk.org.uk or send me a direct message via the forum.
Confusion, difficulty in articulating thoughts and memory impairment are common symptoms that are associated with lupus; it is referred to as ‘brain fog’ or ‘lupus fog’ by people with lupus. Stress, anxiety and fatigue are a few examples of the causes of brain fog, you can find out more about this in our blog article ‘Coping with Brain Fog’: lupusuk.org.uk/coping-with-...
Hi Chanpreet. Thank you so much for your excellent response and I'm so sorry that it has taken me so long to respond.
I saw my GP and he has given me a fit note for a month off work. My employers are not too happy about this and are putting pressure on me to have an occupational health appointment and also for HR to come and visit me at home. I have explained that stress and pressure is contributing to my illness, but they don't really seem to care.
I tried Prednisilone and they had no positive effects at all. I experienced numbness, an increased heart rate and yellowing of the eyes. I understand the ways in which drugs work as my degrees are in biology and neuroscience, however, I think it's very different when you are the one who is sick and trying out various medications.
I have found out today that my cousin has cancer in both breasts and a tumour on her spine and it has made me feel really bad about feeling sorry for myself.
I hope you have had a lovely Easter break and thanks again for all of your info and advice.
At some stage, you may find it beneficial to have an appointment with an occupational therapist as it can allow you to receive work-place adjustments for a better working environment. To find out more about lupus and employment including your rights and what support services are available to you, visit lupusuk.org.uk/working-with....
I’m so sorry to hear about your cousin, I send her my best wishes. Take care
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