Discoid lupus

[Kddp]

Hi. I have just got results of biopsy. I have discoid lupus, I have also had full blood checks and came back clear.

Every where I read says discoid lupus only affects the skin.

But I have been experiencing joint pain pretty much every part of my body where there's joints, stiffness, extreme fatigue. Forgetfulness and the worst is probly the extreme depression.

I have to wait another two months to talk about medicines with the dermatologist.

Does anybody else have other symptoms with discoid lupus I don't understand it, if it only affects the skin and my bloods are clear for systemic lupus. Feel bit lost on what going on

Thank you

[Lizard28]

I also have discoid lupus but I have been diagnosed with MCTD, I have a lot of strange auto immune things going on but my bloods are always clear. My joints do hurt especially my hands and feet, I suffer from tenosynovitis which is very painful. I’m on hydroxy and dermotologist told me I would have been a lot worse if I wasn’t in it. She prescribed dermovate and elecon which keep it under control although does flare up quite a lot. Told me to stay out the sun.

[Kddp in reply to Lizard28]

Hi lizard. Thank you for your reply.Can I ask did you have to wait long from diagnosis to actually receiving your medication?

[Lizard28 in reply to Kddp]

Unfortunately it’s taken about 10 years to get a diagnosis. My Rheumy is a real stickler for blood results. The only thing that my bloods ever showed was inflammation then I took lymphoma which again could be linked as a complication of lupus. I’ve had suspected GCA and was on steriods for almost a year. I was put on hydroxy after about four years with complaints when seeing my Rheumy. I’m sure I have Sjögrens as well, my eyes and mouth are so dry, I had to keep complaining for her to refer me to an ophthalmologist at the hospital. I’ve had ultrasounds that show inflammation in my hands, when it’s bad I have to take more steroids. It’s such a long long journey to get a diagnosis if your bloods don’t come up positive. I was lucky when this rash came up when my hands were so painful that I got referred within a week to see a dermotologist who immediately told me it was lupus but did a biopsy. I’ve had quite a lot of rashes over the years but not as bad as this one.

[Kddp in reply to Lizard28]

I'm sorry to hear it's taken such a long time.I had only discovered I had lupus because of the rash. It's on my face, arms, legs, in my ears and scalp and chest and the worst is on my back where takes up all the shoulder. I get rashes in new places daily. I have steroid cream different ones for different areas my scalp is quite bad and having hair loss.

[Krazykat26]

This is my third time trying to reply so I'm gonna keep it short so apologies if I seem a bit blunt but I'm running out of steam fast!!😹Actually I'm gonna send this now n see if it's accepted n then I'll try again 🌈xx

[Krazykat26 in reply to Krazykat26]

That's better!! 😹I was diagnosed with SCLE in 2017 and started Hydroxychloroquine straight away. I'm also prescribed prednisolone and methotrexate now. I didn't need a biopsy coz my bloods showed positive for lupus. Since diagnosis I've also developed Sjogrens, Raynauds and lymphopenia.Yes it's only supposed to affect the skin but there are folk on here who have started out with SCLE and it has developed into Systemic lupus. As far as I'm concerned the joint pain, muscle aches, fatigue, brain fog, depression are just the same for us. Lupus is lupus and these symptoms are common to us all.

Because of my medication I have regular blood tests which check my liver and kidneys. I have my eyes checked regularly too as we have to when on hydroxy.

I'm prescribed Dermol 500 lotion as a soap substitute and moisturiser..it's used for eczema and dermatitis. I also use Dermovate ointment on skin lesions..ointment rather than cream as it stays on my skin longer and is more effective.

My dermatologist is in charge and does the prescribing for me but a couple of years ago they referred me to rheumatology..so now I have two specialists .

In my rheumys last letter he's mentioned connective tissue disease 😯but I haven't had a chance yet to ask him what he means by that.

As I see it lupus is lupus and we all have to be vigilant and manage it as best we can with our doctors help. Every one of us is different..none of us fit in typical boxes but this site is fabulous for finding out all about autoimmune conditions in general as well as lupus. 🌈Xx

[Kddp in reply to Krazykat26]

Thanks for your reply. Its reassuring to hear that discoid lupus does not only affect skin. I'm glad you got medication straight away. Dermatologist told me in October that I will be on mexetrate and hydroxychloroquine but he is not going to see me until late Feb to perscribe it. Even though biopsy confirmed it month ago.

This site is fabulous and to know not the only one and understanding is very important. And great advice. Thank you

[Krazykat26 in reply to Kddp]

Your dermatologist sounds like a good one. I wasn't put on methotrexate until I had done research and discovered that methotrexate (MTX) was effective for treating SCLE. Previously I had been on a different immunosuppressant called Ciclosporin which didn't agree with me at all. So I asked my dermy if I could try MTX and he agreed. It has really helped with my rashes and energy levels..it's given me back a quality of life. Both of these meds have side effects though so I personally would be reluctant to try two new meds together as we never know how we will react. Hydroxy for example can cause gastric disturbance is some folk so they have to use a certain brand called Zentiva. Hydroxy also takes a long time to get into your system so it builds up over time. Keep posting here and we will help get you through it 🤗💜🌈xx

[Kddp in reply to Krazykat26]

Thank you. That's helpful to know that it takes so long because they don't want to put you on something that potentially could make you worse off. So much helpful advice and points on this site has really been helpful. I am glad I joined. I'm glad your quality of life is better and energy levels have gone back up and rashes are better. So kind to say keep posting and will help get through it. I feel more positive thank you

[KayHimm in reply to Krazykat26]

Hi KK!

You are always so helpful with cutaneous lupus, especially with people newly diagnosed. I am curious, too, by your rheumatologist’s mention of connective tissue disease. Usually that term is meant to distinguish the systemic autoimmune diseases like lupus, scleroderma and RA from other diseases such as local autoimmune diseases like thyroiditis or diabetes type 1. Maybe that is too simple an explanation. But I don’t see cutaneous lupus as typically described as a connective tissue disease. Hmmm . .

You seem to have progressed with systemic symptoms and new antibodies. You also see the rheumatologist. Just wondering if your diagnosis has sort of shifted.

Could you give the context?

Helpful for @Kddp to hear of your history of joint symptoms.

How was your Christmas 🎄 ?

Happy New Year friend!

XxK

PS will look up these terms 👀

[Krazykat26 in reply to KayHimm]

Thats very kind of you to say Kay 🤗Thank you. Happy New Year to you too. Xmas was ok thanks we had a quiet one (just how I like it 😉I have no idea about the rheumys latest letter because he didn't mention it during the appt. He did however ask me to stand up without using my arms..he asked me to walk across the room..then he pinched my thigh and my calf on my right leg and told me he would like to send my for 'nerve testing' whivh I now know is a nerve conduction study. In his letter he says he's not sure if I have neuropathy or steroid induced myopathy.

My rheumy dept is in dire straights at the moment coz I've seen two different rheumys on my last two appts. The one before last was very thorough and when I asked him if my Sjogrens could be systemic he went through all my bloods and reassured me that my organs are all fine. There's no consistency with them at the moment since previously rheumy left. However as it's dermatology that prescribe for me I'm just being monitored by rheumy. I do have to say though that the one advantage of just seeing a doctor once is that they've been giving me tests..I've had my vitamin D levels checked and a Dexa scan!! 😹Hope alls well as can be with you 💜🌈xx

[KayHimm in reply to Krazykat26]

Yeah, better to have consistency with rheumatologists but sounds like they are keeping a close eye on you for steroid complications and disease progression. Sjogren’s is associated with neuropathy so good he is alert and trying to figure this out.

Keep us posted KK.

🥀🌻🌼

XxK

[StriatedCaracara]

I think the table below has influenced who gets diagnosed with SLE. It is meant to provide classification criteria for research. Ten points needed but only one symptom scored. Unless person has lupus nephritis which scores ten then immunological blood test score, is required from right hand side.

Simple way for departments to control caseloads...and they have an excuse..this silly table.

In the past they would have just looked for 4 out of 11 symptoms from the old list, and may have diagnosed sero negative SLE if bloods not giving positive results.

I have not heard of anyone here getting a sero negative SLE diagnosis recently. Criteria issued 2019.

ncbi.nlm.nih.gov/core/lw/2....

So many of us going private and getting UCTD diagnosis instead now. ..but then it is not easy explaining to others what you have, and people say it is a 'completely different disorder', yet a subset of us have the same symptoms and in fact have symptoms of MCTD which is broader.

[Kddp in reply to StriatedCaracara]

thank you. no wonder it takes soo long for people to be diagnosed.