Jessners dx changing to dle

[tee8077]

Hey everyone, I just wanted to share this news for anyone with Jessners since it's not very much talked about.

I was diagnosed with Jessners Lymphocytic Infiltrate last year and prescribed Hydroxychloroquine, I had an allergic reaction to it and had to stop, had another biopsy on a flare up last month and today my Dermatologist said the results show DLE, I've to go next month for a punch biopsy on a clear/normal patch and they're going to compare the 3, so I might be having my dx changed!

I am off to Tenerife on Saturday, my first time "away" since I got diagnosed, I'm armed with my 50 suncream and a plan!

Tina x

[Barnclown]

Thanks tee: v interesting news! I don't have Jess ears ot doe, but I'm fascinated by the diagnostic process in any form of lupus and how criteria evolve

Hope you have a great time in Tenerife!

🍀🍀🍀🍀 coco

PS this link is to a 2012 article on this subject:

Lupus erythematosus tumidus vs Jessner’s lymphocytic infiltrate of the Skin

A systematic comparison of clinical and histologic characteristics.

practicaldermatology.com/20...

[tee8077 in reply to Barnclown]

Thanks for the link, will have a look. The diagnostic process is interesting for sure!

I've always had punch biopsys before but the last time she went a bit deeper and that has changed what they have seen. DLE makes so much more sense in my case since my skin rashes change all the time.

In January an orthopaedic consultant was giving me results of a shoulder MRI and decided to refer me to rhuematology so I am already waiting for an appointment and hope I will finally be able to sit down with them and give a proper history. I am also waiting to find out if I have MS, I am still in "okay" health and getting around etc but thought people might be interested in hearing how I'm going along in the diagnosis process of both MS and Lupus at the same time.

Hope that all makes sense.

I'll come back and update you when I get the new results.

Keep well

Tina x

[Barnclown in reply to tee8077]

🍀🍀🍀🍀 and YES: there is LOTS of interest here in ALL this

Interestingly enough: Ithe early 1990s, way before the NHS figured out my underlying infant onset lupus, I was MS investigations...testing neg...but my signs & symptoms were vvvv MS...now these are referred to as my chronic Neuro-cerebral issues...these are all responding well to my daily combined therapy lupus meds (of course this is basically palliative care, at my age 😉)

Take care & good luck

😘😘😘😘

[Paul_Howard Partner LUPUS UK]

Hi tee8077 ,

Thank you for sharing this with us. If you need any more information about skin involvement in lupus you can read and download our booklet at lupusuk.org.uk/wp-content/u...

I hope you have a wonderful time in Tenerife. If you need any more tips for coping with light sensitivity, have a look at our blog article here - lupusuk.org.uk/coping-with-...

[tee8077]

Thank you Paul, I'm sure I will slip up at least once! I'm only going for 7 days with my Aunt to meet other family members because she didn't want to travel alone. I'm looking forward to a week on the balcony in the shade reading during the day and letting them do their thing.

Thanks for the links, always so helpful

[tee8077]

Back from Tenerife with no mishaps in the sun, I'm all proud of myself but very tired (nothing to do with Mothers day celebrations on Sunday with my Sister haha)

Today I am off for further biopsy to see what's what.

Also, while I was away I got a letter in confirming my MRI was clear, I have to wait until May to find out what next.

Round and round we go on the dx merry go round! No wonder we get dizzy!

x