Worried about Lupus (SLE) diagnosis

[piggybank]

Hello,

I am feeling so nervous about the possibility that I have Lupus (SLE). On Friday I was given blood test results showing a higher than normal result of the Lupus indicator anti- double stranded DNA.

The gp who gave the result said the top end of normal would be 30 and mine was 44 but of course that means nothing to me and I don't know what the units of measurement are for the rest. The gp said she didn't have enough knowledge to interpret the results so she was passing them back to the immunologist who ordered the tests and asking him what to do next.

I have no idea how long that will take but in the mean time I'm feeling nervous!

[VertiginousOust]

Do you have any symptoms of lupus other than the blood results? It's something I'm worried I'll get as a diagnosis at some point too. I've had 'suspicious' blood results before and keep having repeated tests which then give better results. Is there any family history for you?

[piggybank]

Thank you so much Vertiginous for replying ! I am sorry that this is a worry for you too.

I am extremely sensitive to the sun and sometimes have a butterfly mask but it is hard to distinguish under my freckles. I have previously thought it was rosacea.

I suffer from terrible pmt from ovulation onwards. I don't know if that is related.

I am tired but aren't most parents of young children?

No family history.

The event that triggered the visit to the immunologist was a serious bout of hives (urticaria) and angiodema. I suffered numerous times with both of these in my early teens but nothing for the last 25 years.

Could something have been laying dormant all this time?

Have you had symptoms? Did your blood show anti dsDNA? Or are there other markers?

[Stratter5]

Hi piggy, my 18yo DD2 has also recently tested as 'strongly positive', with a lot of accompanying symptoms - it was her symptoms that led to the blood test. She is seeing a rheumatologist at the beginning of September, which will lead to either a formal diagnosis and MDT referrals, or further investigations, as the blood tests can test falsely positive if you have other immunological issues. We have a lot of autoimmune problems in our family, and DD has a very obvious classic butterfly rash.

I started a thread here, I got a lot of very positive responses, which helped DD no end.

[piggybank]

Thank you so much Stratter. I am sorry your daughter is going through this so young!

I will definitely go through your thread tonight. I am going out now and will be without access until the kids go to bed.

I wanted to add that during my teens around the time of the urticaria and angiodema I also had pleurisy and what my Dr diagnosed as chronic allergic bronchitis.

Then virtually nothing wrong with me after that time until this year.

Does anyone know if the butterfly mask can come and go? Or get worse with caffeine or alcohol? Mine doesn't feel like a rash as such and isn't raised. Just very red sometimes. Particularly in the lead up to this episode I had in March.

The immunologist suggested hormones as a trigger and that as I come into pre-menopause (I'm 40) that there might be more issues with autoimmune problems such as I experienced in teens.

[piggybank]

Also, I did not know that you could get a false positive on the blood test. Thank you for that information!

My gp made me feel that anti dsDNA was very specific for lupus so I have been walking under a dark cloud since hearing that on friday!

My husband has been brilliant which helps :)

[Cocolepew]

I have SLE, the worse for me was the fatigue. I wasnt just tired I was exhausted . I would fall asleep for hours and nothing would wake me.
I started on Plaquenil and the tiredness decreased dramatically.
I get pleurisy with it, usually twice or three times a year, I have a touch of it atm because Ive had to work a bit more than usual.
I think mine is quite mild compared to some peoples though I did end up in hospital a few years ago.
I find , as the time has gone, on I'm able to recognise what to do to try to minimise the symptons.
Try not to panic and hopefully you will see a rheumatologist soon

[honeysucklejasmine]

I have SLE. I agree that the fatigue is just awful. I also get joint pains which are very painful. I'll be honest - it's hard. I gave up full time work when I was 28. I am a SAHM now but I did manage part time work. I find the "spoon theory" very good for understanding how it feels, and for helping other people understand. I am at the point now where I am considering blue badge and DLA but the nature of the beast means some days I am absolutely fine so it's hard to justify. (My brother is a wheelchair user on high rate DLA so I feel a bit of a hypocrite when I am having a good day.)

WhatiI would say is "don't panic". You may want to adjust your expectations of yourself though. I can't physically do what I used to, but there is loads I can do. Just have to stop making myself feel crap for not being able to do a 5k run, for example. 1k would be a miracle too

I have been diagnosed for 11 years now. The biggest frustration for me at the moment is other people tbh. They forget, and I feel pressure to do things I am not capable of (e.g. "let's do park run! Don't worry, you can walk instead of running!") so recently I have had to get better at saying no and being really clear about why.

[Stratter5]

Honey I recently got a blue badge - I have brittle asthma, and it's transformed my life, I can go out without having to worry that I won't be able to park near enough.

WRT hormones, I totally agree, my allergies have gone absolutely bonkers lately, and my asthma definitely has a tie in with my period.

[Stratter5]

Oh and DD finds the sun and fluorescent lights make her feel awful. Lots of sunscreen and she stays out of the sun as much as possible.

[Cocolepew]

Oh yes lights! I had to stop going to my school assembly because the lights in the hall made me dizzy to the point of fainting .
I'm much better these days, I think its because I cut my hours in work to two and a half days so I can rest now, if I need too.

[Cocolepew]

Funnily enough the sun doesn't bother me, I would get a rash if not wearing sunscrern but it doesnt cause a flare. The cold weather kills my joints though.

[VertiginousOust]

I'm not sure what the suspicious things are on my blood test, there was something on a dna antibodies test but not the classic lupus one (which I guess is yours?). I have family history of lupus and a number of other autoimmune diseases myself anyway (pernicious anaemia and arthritis) so I think that makes them keep checking.

[VertiginousOust]

Oh, I always get bright red, burning cheeks if I drink any alcohol, I never thought anything of it though really.

[Holdtheslaw]

I just went through this myself - exactly the same as you. It turned out to be drug induced form of lupus from omeprazole - are you on any protein pump inhibitor drugs? I also have rosatia as well which was proved by a biopsy.
I've now been discharged :)

[piggybank]

Hello,

Thank you all so much for your replies. I'm sorry for the delayed response from me but I have been so tired that I've been resting in my free time.

Thank you all for sharing your stories and advice. It sounds exhausting. I am tired but not drop down and sleep at any moment tired.

I have been reflecting of how I have been feeling this year and I have got sore joints but not excruciating sore that I'm crying about it.

I am really over weight. Obese :( So I have previously put it down to being so fat because of course that is hard on the body too! But the joint pain only started this year and I have been this weight for 3+ years.

Recently I have taken control of my eating and started to shift it ! I am more determined now that I can see the possibility of I'll health ahead of me!

Anyway, I can see there are lots of possible symptoms, all fortunately on the mild side (except for the urticaria and angiodema) that I had been putting down to being over weight or hormonal including joint pain, rosacea (or butterfly rash), sun sensitivity, pmt, scabs in nose.

Holdtheslaw, I am so pleased you have been discharged! I was on an ssri the 3 weeks prior to the urticaria and angiodema but stopped because I worried it was the cause. By the time of the blood test I had been off the ssri for 2 and half months.

Thank you all again. Your reassurances that I shouldn't panic has helped so much.

I have a follow up appointment with the immunologist next week. So it's not too long to wait :-)

[Holdtheslaw]

Hi - just wondering how it went?