Sorry to be popping up with a moany, worried post! I was recently diagnosed with lupus (and ?Sjögren's) after my first appointment with Rheumatology back at the start of October. I was started on hydroxychloroquine right away and the consultant told me I should hopefully feel positive impact within 4-6 weeks.
I did feel that there was potentially a but of improvement with my joint aches and general fatigue and actually, I am still feeling more energised. But in the last 3 weeks my lymph nodes have come up everywhere and I've been having freaky night sweats and losing a lot of weight (ca. 4 kilos in this time and my BMI is now something ridiculous like 14.5). My knees and hips have come up all swollen again, although I am a teacher and hence running around on my feet all the time, which probably does not help! I've also been getting really sharp, stabby pains in my chest when breathing in, which my GP said could just be (sp?) costochondritis.
I rung up the Rheumatology number to ask for advice and they've asked me to come in for an appointment this coming week. I guess I am just a bit disappointed/concerned that the hydroxychloroquine hasn't worked (or hasn't worked yet, at least) and worried about what they are going to say or recommend.
If anyone has any thoughts or experience to share, I'd be happy to hear it!
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TennisCat90
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Don’t ever apologise for being moany or worried 🙂. So sorry to hear you are feeling so awful and natural to be worried .
Gosh that does sound like a lot of weight so whilst you have a rheumatologist appointment, personally I would call GP if you haven’t already . GP can run general blood tests and will have all your medical history. If they aren’t helpful ask to speak to another one , please don’t allow them to fob you off .
In my experience with hydroxy is that it took about 2 months to work on rash but then last week skin flared right up again 😒. From reading all the excellent posts on this forum I don’t think it’s a miracle drug .
Please be kind to yourself and let us know how you get on xxxx
Thank you! I did get general bloods done through my GP on Friday, but I don't have the results yet.
Interesting what you say about hydroxy, I will bear that it mind...! I've just had a rubbish night's sleep because I kept waking up dripping in sweat and with aches, so I'm trying not to feel too sorry for myself, haha!
Hello, so sorry to hear about your pain. I agree with Tiggywoos, ‘hc’ takes about 2 months to start working. I would also add, please try to rest as much as you can. Unless you support your medication with a careful diet and rest, it may take longer to recover. With best, Lale
Hope you feel better soon TennisCat90 . I can also confirm that it took a few months before the old hydroxychloroquine kicked in. I get costochondritis around my period (when everything gets inflamed) even when taking hydroxychloroquine. So it's not a fix all, but I probably get costochondritis less than I would without taking hydroxychloroquine. My period is when all my symptoms kind of peak, joint pain etc.
I find sitting up/shifting position eases the costochondritis when it happens. It was scary and painful, and I definitely felt panicky until it was explained to me what it was. I still don't enjoy it, but now I know when it happens what it is, that it's likely due to my being inflamed during my time of the month and that it passes with patience, calm and a shift of position.
Hi, that's really interesting as you are the first person who has mentioned costochondritis being worse at period (as well as joint pains etc).
All my symptoms have worsened around my period for 20 + years and I also get what I call a 'period cold' - runny nose, sneezing, watery eyes, more sensitive to foods, chemicals, smells but never turns into a cold, just stops again. I have pinned it down to mast cells and oestrogen changes. Hormones affect mast cell degranulation, releasing histamine but also other mediators like tryptase, which is cartilage degrading. So not only are you more likely to have 'high' histamine reactions to foods etc, those mediators are inflammatory and right next to nerves, causing pain, as well as potentially damaging cartilage in joints - and costo is an inflammatory condition of cartilage. Oestrogen not only stimulates mast cells, it also down regulates DAO which is one of the ways of clearing histamine. Magnesium helps you produce DAO as does Vit C, and helps calm the reaction (magnesium also helps your liver to metabolise oestrogen through the COMT enzyme), but I also use Quercetin, which is a natural mast cell stabiliser. It does actually seem to help with pain as well as more obvious reactions. I try to eat lower histamine foods around that time and make sure I use my magnesium soak or spray every day. Cheers
Thank you for this bookish - I can only speak for my experience, but for sure, time of the month is the worst time for me. At least I know it's coming each month! Makes it easier to cope with than out of the blue flares - like clockwork I will have a week where my family knows to avoid me as trying to cope with the symptoms leaves me grumpy, emotional and depressed as hell as well as generally feeling very sorry for myself. x
Fellow teacher here 🙋🏽♀️ I was diagnosed with sjogrens (& 'mild' lupus) 4 years ago. I took hydroxi for 4 months and saw no difference but had really bad nausea so I told my rheumatologist that I would not continue it as the side effects outweighed any benefits for me personally. I know everyone reacts differently to medication.
I get all of what you have mentioned swelling of legs/feet but I've noticed it is when I am standing throughout the day at school.
I spoke to my line manager about this and they have said it is fine to sit whenever possible and that I wouldn't be criticised for it. It's not ideal but its important for us to be kind to our bodies and put ourselves first sometimes. Perhaps you could ask for support from HR at school?
Since last yr I started getting the sharp stabbing pain (costochondritis) which I first mistook for a heart attack 🙈 It always shows up when I am stressed and overworked. A relaxing soak, hot water bottle and complete shutdown of school based tasks helps me considerably.
Are you currently working from home? If not please ask to do so as you are CEV. Take shortcuts, regular breaks and leave that marking for another day! I hope you feel better soon 😊
Its good to hear others say it takes a while for the hydroxy to kick in - but I wouldn't be too concerned if you're rheumatologist offers you other medications. They all have their pro's and cons. It's whatever makes you healthy and gives you the energy you need that's most important.
Thank you very much again for the replies. I got my bloods back from the GP, but they didn't show anything worrying other than low WCC/haemoglobin, which I have had before. I'll see what the consultant suggests on Thursday! I know I should be trying to pace and take it easy where possible, but it is hard when I'm at work because I feel quite energised with the demands of the day and it's only afterwards that I totally crash!
As far as I'm aware, I'm not CEV, so I don't have the right/need to shield. My school are also not very open to allowing people to WFH. We have, amazingly enough, not had a single positive case in school, and only a small handful of kids having to quarantine, so there is not much call for additional support with online provision and so on... yet!
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