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Lupus but dormant?

(10 Posts)
HerculePoirotsGreyCells Sat 17-Aug-19 14:20:22

What exactly does that mean?

A couple of years back I woke up feeling a bit stiff and within 24 hours I couldn't walk properly. I was subsequently diagnosed with inflammatory arthritis. Ive been under rheumatology care ever since. Just checkups, no meds as naproxen sorted me out.

A couple of times they have tested for lupus. The first time negative, the second time(about a year later) it has come back positive but the rheumatologist says its dormant. It has really confused me. As a precaution I'm on Hydroxychloroquine 200mg. What on Earth do they mean? I'm not sure if it's the hydroxy or not but since starting them I've felt awful - brain fog, fatigue and stiffness. Not to mention upset stomach! Also being told that I have lupus has thrown me for six and I'm imagining horrible things.

worriedaboutmygirl Sat 31-Aug-19 18:16:39

Have they diagnosed UCTD? My blood work is lupus but not classic symptoms so UCTD is my dx

HerculePoirotsGreyCells Sun 01-Sep-19 17:41:32

Ive just a whole lot of new blood work done so I'm hoping to have more clarification soon. I just find the whole thing confusing!

post3456 Tue 03-Sep-19 13:01:25

Hi i was told 9 years ago i had discoid lupus.But from June 2018 i developed Rayauds and then knew something was wrong,my fingers and toes where always swollen,sore,white and blue,there was cuts and marks over my fingers,so went to my GP in march,got my bloods taken and they came back with ana's.Went to a Rheumatologist he said it was borderline sle lupus,so the confusion started.After a second visit to the Rheumatologist i had to tell him symptomds was worse,always tired,had to give up some work,not sleeping,fingers and toes still the same,feeling like have the flu,can also affect sinus problems and is a lot to take in.

HerculePoirotsGreyCells Tue 03-Sep-19 21:56:48

Post3456 I'm sorry to read your comment. It's very hard isn't it? I just don't know what to think at the moment. I have had a few rough days, feeling like I'm about to get the flu but is that the meds? Lupus? Or just the flu!? I just don't feel like 'me' at the moment which isn't helped by my lack of faith in rheumatologist!

post3456 Wed 04-Sep-19 09:05:43

Hello Herculepoirotsgreycelle.Yeah it is hard,i would say it is the lupus making u feel rough.Im on 200mg of Hydroxychloroquine a day aswell the,the down side to this tablet is it can affect your retina.Did your Gp send a letter to u asking for u to get your bloods checked every 6 mths,i got one its so they can keep a check on my Thyroid.Does the meds help with the stiffness.I would have to really agree with u on the fatigue part i think it can b worse than any pain.Im not to bad with my Rheumatologist any question i ask him or if anything is bothering me he will tell me the truth and explain everything.I find that keeping a diary of what is going on,and the symptoms helps.

HerculePoirotsGreyCells Wed 04-Sep-19 11:11:26

I'm keeping a diary of symptoms - thanks for the tip!

I'm on prednisolone currently which will taper off. Felt better today thankfully. I didn't know about blood tests every 6 months but that's the average on which I see the rheumatologist and I always have blood tests just prior to those appointments.

post3456 Tue 10-Sep-19 21:49:38

Hi HerculePoirotsGreyCells.How has things been with u hope u r feeling alright.

HerculePoirotsGreyCells Wed 11-Sep-19 08:01:17

Thank you for thinking of me! I think the shock of things has worn off and I'm now just waiting on the test results to come back and see from there. One thing I have done is to request all my medical notes relating to blood tests/rheumatology from when I was first diagnosed with arthritis.

Hope you are good too x thanks

post3456 Thu 12-Sep-19 12:20:46

Glad to hear you r doing alright.It does b a lot to take in.I requested my notes about 3 weeks ago.I wanted to get a proper look at them so i could get things straight in my own head.Yeah doing ok having a bit of a flare up at the moment,but that's expected.Thank u for asking.

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