Is it lupus related? : I was diagnosed with... - LUPUS UK

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Is it lupus related?

BethRidout24 profile image

I was diagnosed with inflammatory arthritis last year, never pin pointing an exact diagnosis like RA or lupus. I’ve been treated on Hydroxy for 9 months which has helped a lot but in the last few weeks my joint pain is worsening, I have pleuritic pain on and off, low grade fever, nausea, breathlessness and fatigue. It feels like I’m constantly catching infections and feeling under the weather which has made me feel quite anxious. I have never thought lupus would be on my radar but with these symptoms alongside eye lid swelling and dry itchy skin patches that come and go, I am now wondering if I am having a flare up. Can anyone relate to feeling like this?

10 Replies

Hi Beth it’s hard with these autoimmune diseases as many of us have other conditions that merge with each other and make diagnosis so difficult,I have oesteoporosis kidney stones, a nasty brain injury that still gives me issues and the daddy of it all pernicious anemia which I have to self inject every other day for to keep me alive as my body cannot produce or store b12. I have just had blood tests done for Sjögren’s syndrome and lupus because I have some of the symptoms you mention but unfortunately a lot of these symtoms cross over with the other A.I diseases.The breathlessness and fatigue in my case can be p.a telling me I need an injection or it could be lupus or Sjögren’s that’s why it’s such hard work getting a diagnosis.I would advise you to have your bloods redone and check your vitamin and mineral levels,what gps usually say are fine levels are far from fine so anything that looks low borderline to you post on the relevant forum for further advice.I personally started out on the thyroid forum posted my blood tests then got pointed in the direction of the pernicious anaemia forum and by persisting and using private labs and consultants I finally got some answers to my illnesses.I’m not quite there yet but almost .best of luck xx

BethRidout24 profile image
BethRidout24 in reply to

Thank you for your advice. I am definitely going to get my bloods done next week. However I’ve never had much luck with the GP advising much from the results as you said as they just go by their lab norms which don’t always apply to people with AI diseases. Thanks again

stiff19 profile image
stiff19 in reply to

We shouldn’t have to , but it seems to be a way to go with private labs and consults, gps have a habit of saying things are fine when not.I’m glad you got some answers and hope you get there totally 🙏

Feel for you I have these and just gotten nowhere in nearly 3 years 🤗🤗🤗

in reply to stiff19

Don’t give up stiff19 it’s taken me years too and if I can persist while dealing with the aftermath of a brain injury anyone can. Get copies of your blood tests and post on whichever forum relates to your concerns on your results for decent advice.ask for recommendations by pm only for consultants then research them then get your gp to refer you,keep battling that’s what I do and I’m nearly there,not with cures just with diagnosis then I can work on solutions and treatments with consultants help,best of luck xx

stiff19 profile image
stiff19 in reply to

Thankyou, yes it’s tiresome so long searching and docs always say bloods ok, dermy has tried saying a lot of skin changes come with ageing re swelling etc and I’m just tired of it all now, I don’t know anyone around me who has all the colour changes and swellings I have and it’s down to their age 🤷‍♀️ My go won’t refer me to anyone only at local hospital and I don’t want to see that rheumy again . Thankyou for your reply and I wish you well and good luck 🤞 you have had so much to contend with and I admire your battling strength 🙏 best wishes 🤗x

It sounds like you need to see your rheumatologist. They may have given you the diagnosis of inflammatory arthritis because you were in early stages of autoimmune disease and diagnosis was unclear. The low grade fever and pleuritic pain is consistent with both lupus and RA.

The most concerning thing is that you symptoms are worse. I doubt your GP will want to do much more than re-run blood tests. You may need new medications that only a rheumatologist can prescribe.

Best of luck and don’t hesitate to come here with any worries.

K

Hi Beth,I agree with ‘Doris’! GPs are useful but often far too broad when they look at AI diseases. I have a diagnosis of AOSD but also have lupus type flare ups including dry skin patches, weepy eyes and dry eyes, constant sore throats, odd skin growths and in recent years LS. It’s worth getting private extensive bloods done for conclusive results.

Its hard everyday waking to the daily onslaught of symptoms I know but in my head I try and only allow one symptom per day to affect my activities and treat it accordingly so when I wake up I decide what’s worse and ignore the rest!

Wishing you a better day.

in reply to stillsdisease

Good advice there xx

With your eye swelling does it drop and can you raise your eyebrows? Can I ask where you get your dry patches that come and go I get these on face , eyelids elbows fingers toes they seem to get red blustery looking then scale over then go just to reappear 🤷‍♀️Interested to read your post 👍 sorry you’re going through this though 🤗

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