All Lupus Symptoms with negative CTD scan

[danny101]

Hey, sorry if this comes across as insensitive as I can imagine this is an intense and stressful time for everyone. I wanted to know if you think that I might have Lupus. Or atleast could compare you first symptoms with it.

See I have never ever felt like this before. I have always been extremely healthy, fit, male, 25 year old. But in Feb I had strep. Then after strep I was on antibiotics for a whole month and then had an extremely stressful situation where I had to take more intense medication. I was incredibly stressed during this time.

I started to have muscle aches all over my body but especially in my wrists. Intermittent fevers and sometimes nausea. But then I got the butterfly rash (very itchy) along with rash on my neck and sides of my face and then my forehead also a really itchy scalp. Have now developed two very painful canker sores (really painful) in my lip.

The muscle aches started off severe then turned into bone pain and really cleared up. But recently came back in full force. I want to note that during this whole two and a half months ive been feeling these symptoms its never been debilitating. I can still do mostly everything I did before. But I feel there is something up with my body. I have days where i am very fatigued.

I was wondering if any of you had, had experience with a CTD screen an dhow accurate they are. My GP looked over all my recent bloods and said I am just very low on vitamin D and run dry from antibiotics. But this rash on my face still perseveres and so does the pain and burning sensations!

This what the CTD screen says, can anyone help me translate this, im completely new to it,

"

0.1 Ratio (this was my result) [0.0- 0.6]Connective Tissue Diesease Screen

CTD screen contains dsDNA, Sm, Rib-P, PNCA, U1-snRNP, Ro, La, Scl-70, CENP, Fibrillian, RNA Polymerase III, Jo-1, MI-2 and PM-Scl

ANA screen via IIF was been replaced by CTD screen in DEC 2017

"

I also got a LUPUS APTT insensit which was in normal range?

Is a ANA test more accurate then CTD? The GP said I should wait till July to see if symptoms persevere and then she will refer me to Rhum. Im unsure though I still feel unwell. Should I trust the results? Sorry I know this must be so annoying to read for some of you who are actually really going through it. Just needed some advice.

Im sending you all a lot of love and strength.

[miccika1]

I dont understand the results. My understanding is that each of the autoantibodies that you listed should have a positive or negativr numbers. You provided only one number (ratio) and Im not familiar with that one. ANA is a generic test just shows if you have any autoimmune antibodies and the one you took is more specific and could point to a specific autoimmune disease. I would not wait too long to see the rheumatologist. Did you get any therapy? Prednisone? Vit D?

[danny101 in reply to miccika1]

Hey I found the explanation of this test here, they replaced it with the ANA IFF one

pathology.imperial.nhs.uk/u...

[danny101 in reply to danny101]

Also they gave me no treatment unfortunately, I had all my bloods run. I specifically want a urinalysis though. My doctor refuses to give me one.

[miccika1]

Just read about this new test. It's fairly good in determining if you have lupus but not so much for other autoimmune diseases such as MCTD and RA. For those the older IIF test is better. You mentioned pain in wrists. That usually comes w MCTD, for example...Did you ever experience Reynauds?

[danny101 in reply to miccika1]

Yeah apparently they seem to be really accurate from what I have read online. I have never had Reynauds, i always have blotchy patches on my palm but thats normal. Does RA cause Malar rash?

[miccika1 in reply to danny101]

I don't think RA causes malar rash, but be advised that you are allowed to have more than one condition at the time so keep that in mind. Strange that they didnt give you at least vit D considering you are low. Hope you are taking some over the counter. Vit d deficiency would make you fatigued

[Melba1]

Hi Danny, it’s not annoying at all for us to read - lots of people like you post on here to get advice and lots of people have been in the same situation.

We can’t tell from those results and symptoms whether or not it’s lupus. Lupus is much less likely with a negative screening result but 5-8% of people with lupus will be negative and some people’s results are negative initially then become positive over time.

The fact you’ve been very unwell, stressed, had antibiotics etc means it could easily be a post viral reaction - and therefore hopefully temporary and you will be fine soon (although can still take a while).

If you can feel improvements (possibly not every day but over every week or so) and these joint problems/ rashes etc don’t flare up again then it was most likely a virus BUT if the symptoms become severe, there is anything worrying you or it happens again then I’d push for a rheumatology referral.

Lupus is much less common in young men but it does happen and drs are less aware of it than if you were female so worth asking the question.

It’s also worth asking the GPs to dip test your urine for protein as this can be an early sign especially in young men.

I really hope you feel much better and this is just a one off thing that resolves itself but don’t be shy about pushing your drs for answers if it continues/ happens again and do ask us if you need us

Xx

[danny101 in reply to Melba1]

Hey thank you so much for your response, my urine has been foamy for a while but my twin brother also gets this and doesnt suffer any symptoms. I just did a urinary dip test that came back this morning. Everything came back negative?

Today so far is a good day, but honestly that can change very easily.

The thing with the rash its just not budging its not getting better or worse. Its just there?

Thank you so much You have been a really help and comfort in these times

x