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Discussion Starter · #1 ·
Hi everyone,

I'm new here :) I just wanted to ask if anyone with milder symptoms would be willing to share their experience with lupus?

I'm 25 years old, and have been having strings of vague symptoms for around 2.5 years now (bouts of terrible fatigue, mild fevers, hive like rashes after being in the sun, weight loss, joint and muscle pain..
.) All bloodtests have come back clear, apart from mild but persistent neutropenia, and a positive rheumatoid factor.

My previous doctor used to keep an eye on me for lupus, as I have raynauds, and my aunt has scleroderma. I'm currently waiting to see a rheumatologist and have more tests done.

My face goes flushed when I'm feeling unwell with the fatigue and joint pain...But from what I understand this doesn't necessarily indicate a malar rash...Has anyone else here experienced something similar before they were diagnosed? :rolleyes: Thank you!!!
 

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Hello and welcome,

Can I ask if he has done an anti-RNP blood test ? I am wondering about MCTD. I am glad they are investigating you further, you have a lot of things going on that need checking out. Let us know how you get on..........Claire
 

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Discussion Starter · #4 ·
Thanks for the info everyone :)

Hi Claire, this is helpful to know - I hadn't considered that all of this might be MCTD...Everything together just gives me the sense that my body is generally 'unhappy', even though I make sure to take care of it as well as I can. I shouldn't have to work from home at my age due to feeling tired and fluish like this every few weeks, right? :sick: It's confusing...

I will request that the rheumatologist carry out an anti-RNP blood test! Will post again when I know more...Thank you!
 

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Hi everyone,

I'm new here :) I just wanted to ask if anyone with milder symptoms would be willing to share their experience with lupus?

I'm 25 years old, and have been having strings of vague symptoms for around 2.5 years now (bouts of terrible fatigue, mild fevers, hive like rashes after being in the sun, weight loss, joint and muscle pain..
.) All bloodtests have come back clear, apart from mild but persistent neutropenia, and a positive rheumatoid factor.

My previous doctor used to keep an eye on me for lupus, as I have raynauds, and my aunt has scleroderma. I'm currently waiting to see a rheumatologist and have more tests done.

My face goes flushed when I'm feeling unwell with the fatigue and joint pain...But from what I understand this doesn't necessarily indicate a malar rash...Has anyone else here experienced something similar before they were diagnosed? :rolleyes: Thank you!!!
Hi

My Rheumatologist has me in the "mild" category and I guess that I'm on antimalarial and not any of the stronger drugs that it would be a mild case. However, without medication it certainly didn't feel mild.

The fatigue made me feel tired but ok to function, certainly not in the "terrible" category. The mild fevers I can relate to, but not the hive rashes. The sun did cause me problems originally. Now the lupus is controlled its less of a problem, but in very bright light i need glasses and sun cream. The joint and muscle pain I had loads of until it was controlled as well as lots of tingling.

As for my blood tests, well all mine were negative on NHS. I had the ANA done at an alternative private lab and that originally positive, and now thats negative. So blood for me is not really that useful.

What I can tell you is that I have improved on the medication and now lead a relatively normalish life as long as I don't push boundaries. Recently I have returned to the gym although that seems to be stirring the immune system.

The flushing of the face I get. Have you seen a dermatologist? It could be roseacea? That can be triggered by light.

Keep a daily diary of events. Sometimes getting a diagnosis can be hard work as quite a few Rheumys only work on bloods,not the whole picture.

If they start you on medication, and its for mild lupus its likely to be plaquenil hydroxychloroquine. In which case you need to get some baseline work done on your eyes such as visual field tests and retina checked. This needs to be repeated at least once per year whilst on the medication.

Kind regards
Mark
 

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Discussion Starter · #6 ·
Hi Mark,

Thanks for sharing your experience. It really shows how different this condition is for everyone. Sometimes it seems that every doctor has their own individual criteria for it, but I'm really happy to hear that you're feeling better on the meds that they've given you.

I had wondered if my facial redness was rosceacea, it's the fact that it comes and goes with these bouts of general unwellness that I get, along with getting much more intense after being in the sun, that made me wonder about lupus though.

I think I understand what you mean when you say it doesn't feel mild...Fatigue is a very personal thing for everyone for sure though. Perhaps this is working backwards, but the spoon theory rings so many bells. I've learnt over the years that if I have two events in one week, I can maybe pick another third one to do at a push without having to spend the rest of the week and most of the one after in bed everyday after work. :oops:

I'll start keeping a dairy of symptoms before seeing the rheumatologist - at the moment more symptoms are just appearing in a one-after-the-other fashion. :(
 

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Hi

I suspect that the UV rays could be triggering the rash, which is then causing the symptoms to get worse. Try using suncream. Minimum SPF 50.

Kind regards
Mark
 

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Just to quickly say...when the Drs say 'mild' they mean there is no current organ involvement....not that the pain is mild. My pain was at it's worst whilst they were diagnosing/investigating me and in the early years of treatment. The pain was awful...nothing mild about it, so please don't go round thinking that you are making a fuss over something that is mild !!
 

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Hi there...
I also have a lot of those symptoms and I also get flushed in the face when I'm not feeling well or if a flare is coming on. It is on my cheeks and my neck. It's really warm and almost swollen if that makes sense.
Crystal
 

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Hi there...
I also have a lot of those symptoms and I also get flushed in the face when I'm not feeling well or if a flare is coming on. It is on my cheeks and my neck. It's really warm and almost swollen if that makes sense.
Crystal
hi i have mild lupus ,my bloods were negative at first my second test was a high positive been treated now for 4 years i now run on a low positive,but i have neutropenia, and low white count they say mine is under controll but some times it doesnt seem like it but i have fibromyalgia and thats some of the pain
 
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