Concerned about a flare

[Alrac94]

Hello,

I hope it's okay for me to post - I know that no one can really give me an answer, but I'm still reasonably new to this and unsure about when to seek medical attention. I was diagnosed with lupus and APS in August last year and have been generally feeling quite well on hydroxychloriquine and daily aspirin. At my last appointment (earlier this month) the consultant said they would consider moving to methotrexate (sp?) as I'd had short-term steroids due to blood test abnormalities and they hadn't been particularly effective. But I have been feeling okay, apart from some fatigue and swollen up lymph nodes, so they decided to hold off it for now.

For the last week or so, I've not been feeling well... I've had episodic fevers (which does sometimes happen), and also nausea, lack of appetite and very bad upset stomach (I won't go into too much detail). Also, I've had randomly itchy skin, but no rash. I can't think what to make of this, since it doesn't really seem to fit lupus symptoms at all. Only the fatigue is lupus-like, but the rest is so random that I'm querying whether it could just be a virus or something totally unrelated.

I have been managing to function, sort of okay, more or less, but I'm not feeling any better and not sleeping well because of fevers and upset stomach. I'm wondering if I should contact the rheumatology team... or my GP... or am I just being silly?

Any thoughts or advice very welcome xx

[BeeManShrop]

Hi Alrac Sorry to hear you are feeling unwell just now. Firstly I am not a medic just a husband of my dear wife who has had Lupus SLE for about 18 months now. You mention nausea and stomach troubles which my wife had similar last year that gradually got worse and eventually put her in hospital for 6 weeks (before Lupus was diagnosed) she was discharged with no diagnosis i.e. the doctors treating her had no clue as to the root cause. However, they did find she had infections of the throat/oesophagus (candidiasis or thrush) plus a stomach infection plus pleurisy (lung infection) altogether she ended-up very ill indeed. She could not swallow or even open her mouth enough to chew anything. We now believe she was having a lupus flare that was not recognised by the medics. This of course does not mean that you have the same issues. I am just saying be careful and get your GP to check you out with blood tests etc. just in case. If it is some sort of infection it is better to get it treated early rather than wait and let it get worse and more difficult to treat.Hoping this helps you get well soon.

[JenniferW]

Hi AlracNow you have lupus, you should feel free to contact your GP much more rapidly than you would previously have done. And as you have just been diagnosed and are only taking hydroxychloroquine, any illness could cause a flare up of the lupus symptoms, so feel free to ring the rheumatologist helpline too. Don't be shy.

Best Wishes

Jennifer

[Hidden]

Hello, note I do not have Lupus but Stills Disease which for me manifests as RA mainly.I’m responding for information gathering only as it may be useful but Stills is a different AI illness despite overlapping symptoms.

Constant sore throat which after 40 years of Stills I believe has triggered other things, one of which is a prickly dry skin, sore skin rash and skin growths. I also have vaginal Lichen Sclerosis which could be the cause of both skin and throat issues??

I also have nausea, fever, heartburn and random headaches as well as migraines.

These are in addition to the usual pain and joint swelling from Stills but I’m convinced they are linked.

As BeeManShrop posts, underlying issues could have an impact and need reporting. We’re all different and so our illnesses but hope this information is useful.

Take care.

[purejoy]

Lupus manifests in our bodies in such a varied number of ways that sometimes it's hard to figure out what's going on. Sometimes it's the lupus causing the problem and sometimes it's the medications we take for the lupus that can cause the problem. What I do know for sure is your health is the number one priority and therefore you can never know too much about your health and you can never ask your doctor a dumb question. If you are ever made to feel like your inquiries about your health are a waste of your doctor's time, it's time to find a new doctor. There will be a kind and compassionate doctor out there that will take the time to answer your questions and be happy to do so. You deserve quality care, provided with compassion and respect. Sending you love and light!