Just curious with a few things that have been going on for me recently. I was diagnosed with Lupus about a year or two ago and have managed since. I was really starting to think it was a miss diagnosis, as I know it can be difficult to diagnose and I got a one within three years.
Over recent weeks I have developed significant mouth ulcers, headaches, trouble sleeping but I am extremely exhausted, fatigue is crazy and my eyes are so sore, I am waking up and they are crusty, they are sore all day and my partner said the whites are starting to be a bit of a yellow tinge, is this normal?
My mood also, it is so up and down and I have no explanation for it at all. I have a review with rheumatology at start of October but was just wondering if I should be concerned or not?
Thanks
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Orange9
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Are you on any medication? It really helps people help you if you put that sort of info on your bio on your profile page.
If the whites of your eyes are starting to take on a yellowish tinge you need to see your GP urgently as that is a symptom of liver problems, together with the other things, something is going on and needs investigation sooner rather than later. I would ask for an urgent appointment with the GP who will expedite blood tests and have them ready by the time you see the rheumy.
I think people looking at you are more likely to notice to be honest. And if he thinks so - let the GP decide! It is what he is paid for after all. And you are definintely less well aren't you?
While hydroxychoroquine didn't have liver problems reported during clinical trials, it has been reported in post-marketing monitoring which is when the less common side effects are found because of the much larger numbers. Cases of liver side effects have also been reported with montelukast - it isn't common but it happens. And when you are taking two things that COULD cause it, it is more likely to happen.
Unfortunately, I am unable to comment specifically and would suggest contacting a doctor about these just to be on the safe side, I would also mention them to your Rheumatologist in October. I have shared below a link to our publications page and a blog about prepping for appointments, which may be useful to you to look over -
Hi orange9, it’s possible as we go along that new symptoms pop up and another diagnosis is added. Lupus can cause crusty eyes, mouth ulcers but so can other things like sjogrens. As already suggested you need to make an appt with the gp for the yellow tinge in eyes. A blood test can check to see what’s going on. If you are starting to have any new problems it’s always best to catch them before they get a serious problem. There are lots of things that can help once you know what you’re dealing with. Let us know how you get on as I’m sure there will be others that can relate. 😊
Sorry to hear you are unwell. I struggle with sore eyes which can get crusty too, I think is related to a bit of sjogrens, I was diagnosed with lupus but at time of diagnoses they said my bloods showed a slight crossover with sjogrens which is apparently very common. Maybe ask GP for eye drops (I use Xailin eye drops). Lupus itself can also cause dry eyes though.
Re the yellow eyes I also agree that you need an urgent GP appointment to get liver and kidney function tests. These are simple blood tests that the GP can request.
I would also recommend getting some urine dipstick tests (you can get them from Amazon for about £8) and once a month just doing a quick urine dipstick test to check for protein, blood etc in your kidney which indicate issues with your kidneys. I’ve just seen an amazing specialist and he told me to do this as he said kidneys problems are fairly common and you get no symptoms until there are significant issues. So the urine dipstick should be done regularly to give early indication of any problems.
Hi to ease your eyes if you can't see a GP quickly you could try hylo tears a few times a day followed by actimist spray on top (both preservative free) I find an eye gel at night before sleep stops the crusting like hycosan night or similar. A usb plug in eye mask for at least 10 mins twice a day (I do 20 mins twice a day) is wonderful for me the heat really helps relieve the soreness (Amazon do some for around £20). A usb eye mask is a must as it holds the temperature constant as opposed to microwave ones which go cold too quickly. I have Sjogrens Syndrome. You may have it if you have dry mouth, nose, nether regions but you can bring this up with your Rheumy or GP or Ophthalmologist. The above should help your eyes in the short term and if you have a dry eye problem you can sort the eye drops at least on prescription later. Sore eyes are just awful so I understand how you feel completely let alone the other things you're dealing with.
Keep a RECORD of when & type of Symptoms you have plus any EXTRA “STRESS”, FOODS, SUNLIGHT / UV LIGHTING Exposure, Smoking Exposure, Viruses lately, etc -
To help Dr understand & You try to figure out what YOUR “triggers” are for a LUPUS FLARE.
You may need a SHORT PACK of STEROIDS (20-30 day) at 20 mg to wean off in a month just to get your BODY back in line.
Then, look to possibly adjust your Lupus Medication or CONTROL your OUTSIDE “stress exposure” to help reduce these varied Symptoms.
ALWAYS, call your RHEUMATOLOGIST when you have any of these FLARES in PROGRESS. They can go further into your INTERNAL ORGANS if left untreated or you cannot REST ENOUGH to get under control.
Feel better 💜 - BE PROACTIVE & Learn more about LUPUS as your SYMPTOMS change or progress.
I'm sorry about present state of health. I was diagnosed of SLE many years ago and can relate to many of your symptoms. Please phone up your Rheumatology Consultant Secretary to arrange for early appointment. Also, contact your GP for management of your symptoms. Have adequate rest, avoid stress and take your prescribed medication. I wish you a speedy recovery.
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