Hello everyone. New to the group and in fact the whole lupus “thing” so please bare with me, as I’m playing catch up on most of you as to what I’m dealing with.
I saw a rheumatologist a few days ago after feeling super rough for about 12-18 month and having numerous blood tests etc. After asking a few questions he was quick to say I had a mild case of lupus and gave me hydroxychloroquine tablets to take. At the time I Knew absolutely zero about lupus, so after going home and googling I was surprised how casual the doctor was when telling me and how little information he gave me afterwards!
I have loads of questions I’m gonna be loaded up with on my next visit, but until then I wanted to ask what you thought about the possibility of a mis diagnoses and wondering if the doctor can be 100% sure it’s lupus from blood tests and a urine test alone? Any advise or knowledge welcome!
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Bluetone
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Hi I've not long since been diagnosed with it also. It's scary isn't it? I know that theirs different types of lupus. I've also got rheumatoid arthritis and B12 deficiency. Starting new meds next month. I really do feel quite alone with this diagnosis too x
There's a huge amount of new and complex information to take on with this diagnosis. The short answer to your question is that yes, it can be very difficult, and misdaignoses are possible. As far as blood results go, two most often discussed are the ANA and ds-DNA titres . ANA is non-specific and just indicates you are producing antibodies against your own tissues - this can happen in a range of auto-immune conditions. ds-DNA is said to be highly specific - if it's positive, you are almost certain to have lupus/SLE.
That said, SLE/lupus is incredibly varied in its severity and the range of symptoms that people have. In fact, no two people seems to be quite the same.
It'd be good if you are able to hang around and add your thoughts and experiences to everyone else's here x
I was diagnosed in October last year and felt exactly the same... the rheumatologist was so casual and didn’t really explain anything! I ended up at the GP the next day who kindly contacted the rheumatologist for me to say how baffled by my diagnosis I was and she arranged a day clinic appt the following week where we could spend more time going through things.
Try not to read too much, it can be overwhelming and everyone’s journey is completely different. It took around 4 months of taking hydroxychloroquine before I started to feel better and I also try to do regular exercise and take turmeric, apple cider vinegar and forever aloe Vera drinking gel.
I had my 6 month follow up appt this month (different rheumatologist) and he explained that not all people will suffer organ problems and the fact that it’s just muscles/joints/tiredness for me it’ll probably continue like that. Do you know what your ANA/double stranded DNA results were? X
Hey. Thanks the the response. I don’t really have any specifics about blood results as yet, I think I spent all of 3 minutes with the consultant and that was mostly spent with him typing on his computer. I’m gonna start the meds’ next week and hopefully overtime my fatigue will improve, but until then I’m just gonna stay positive and keep up with exercise and training as much as possible as I know this will help long term. Thanks for the advice and support. Chris.
You’ve definitely got the right attitude, positive mental attitude definitely helps improve your physical and mental health. Hope the hydroxychloroquine agrees with you and makes you feel better. Try get a good nights sleep, if I don’t get 8hrs plus I really feel wiped next day. Stay positive x
Hello Bluestone and a warm welcome to the tribe... there r more of us lupus warriors than u think!! U have come to the right place..lots of advice, info, tips on how people manage with their symptoms, and we often have a giggle!! 🤗 Very supportive in general!!
I was diagnosed in 2017 with SCLE..I had never heard of lupus before!! Thank goodness for the internet n this forum has literally been a life saver for me.
As whisperit says we have lots of things in common but we all seem to have our own individual experiences. Just reading what others r talking about gives us loads of info n enables us to ask appropriate questions at our appts.
Lupus UK are marvellous n u will probably get a reply from Paul or Chanpreet when they r back in the office..they're on Easter break at the mo. Baba has already given u the link..they know all there is to know about lupus..fantastic!!
Lupus is what it is n I would probably say that none of us seem to have ' mild lupus'..he's probably going by your blood results alone!!
Hydroxychloroquine is the usual first med that we r prescribed n it can take a good long while before u feel any benefit as it takes about 3 months to build up in your system..what dose did he start u on? It can have some tricky side effects..one of which is photosensitivity so if your not already wearing sunscreen u would be advised to do so. Factor 50+ n cover up..sunhat..shades..long sleeves..trousers!!
I find it handy to keep a diary of any symptoms..reaction to meds etc..good days n bad days so I can refer back to things that have worked for me..n then before appts I write some questions beforehand because appts can be pretty rushed n confusing.
With hydroxychloroquine..we call it hydroxy here..we have to use a lot of abbreviations coz half of us haven't got the energy to type longhand!!..u have to get your eyes tested regularly..once a year to start..this is to check the health of your eyes because it can affect the retina.
If u have any wierd skin reactions or rashes I would suggest that u take photos to show your rheumy at the next appt..it's quite common for rashes to disappear when u want a professional to see them.
Right I've gone on long enough...rest assured fellow warrior that u are not alone!!! 🤗💐🤗Xx
Thanks for the response and useful tips. This place seems to be a great source of info for sure!
Not too sure what dose he prescribed by think he said it was the lowest one to start with. (To be honest I put the prescription in the glove box of my car and it’s stayed there... kinda thought it made it too real to get drugs!!! 🤦♂️) so it’s the drugs which makes you photosensitive rather than the condition?
It's both..not everyone with lupus is photosensitive..I am but there are others here who feel better in the sun..n not everyone suffers photosensitivity as a side effect from hydroxy..all of us a different bods n u will find your own way..but be careful coz if u love the sun..lupus might well let u know that it doesn't!!
Lowest dose of hydroxy is the best place to start xx
I don’t really post here much. I felt denial at first. Was 8 months ago and I’m still coming to terms. I was actually called into the Nation hospital for rheumatic diseases in Bath after my blood tests done by my doc had been analysed. It was all so quick and I hadn’t even heard of LUPUS ( SLE) before.
They have been fantastic but I’m so used to being a do-er.
See if you have a good hospital near you with and see if there is a group nearby.
I don’t have a support group near me so I read posts on here and have learned to PACE - I saw an Occupational Therapist for this.
It’s still a complete mind mess tho.
One thing is to respect it and work with what you have on any one day. Keep exercising and positive.
Got dxed at 25 and have had for almost 30 yrs. I am healthy and active, despite dark, dark days of pain and confusion in the beginning. You will find a solution so please trust your dr, or get a second opinion, but try the meds please. It takes a while to feel effects. I have been on plaquenil for the whole time and had no major organ issues. it has been completely manageable for me, with a few ups and downs. It is overwhelming and scary at first - so don't read other stuff as you will get depressed. and everyone TRULY has a different story - you will figure yours out. Stay positive and hopeful!
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