Mild vs aggressive Lupus

What does it mean to have mild lupus versus aggressive lupus??? And is yours mild or aggressive and for how long have you had it?

[Heatheric]

I think its not a case of that but whether it is active or quiet. My lupus seems to stay 'quiet' most of the time but of course does have the potential for being active and flaring up. When I was diagnosed, the consultant said that as I had clearly had it for some years but at a quiet level, then the pattern would hopefully continue and that has been the case for 4 years now (long may it continue). I understand that other people have more frequent and more intense flare ups which are the things that cause the organ damage. Hope that is helpful. Heather

[dgleds in reply to Heatheric]

I read how it is the first 5 years, is an indicator of how you will always have it pattern wise..???

[Wendy39]

Hello.

It's a good question and one that I thought about a lot when I was first diagnosed. My diagnosis of SCLE in 2013 raised loads of questions for me. SCLE is an overlap between SLE and DLE. I was told initially that my lupus was mild and that it was sun induced so that I would probably only need to take hydroxychloroquine during the summer months. This confused me as I had a lot of other symptoms, met the criteria for SLE and as time went on I realised that I have flares all year round and am on the max dosage of mycophenolate mofetil, an immune suppressant. This dosage is used for people with moderate to high disease activity.

So it leaves wondering whether what I was told initially was well meaning or whether they just didn't understand my diagnosis and lupus at all. Anyway, your lupus can be on a spectrum of mild to aggressive and it can be active or non-active. Is it Lady Gaga whose Auntie died as a complication of lupus and she has tested that she has the genetic disposition to lupus too but hers isn't active at the moment. You have to have the genetic predisposition to lupus and then it is triggered by hormones, stress or an environmental factor, for example. Once is becomes active, you will need medication to control it. Unless you go into remission. Remission can happen on its own or be drug induced.

I think mine was triggered by the birth of my 3rd child, so hormones. Although I had experienced various warning signs for a long time.

Depending on the severity of your symptoms, you will be monitored and given the medication you need to control it. There is obviously no cure, so the medication and life style changes we make, help us protect ourselves from serious flares and any potential internal organ damage.

Some people cope with their lupus very well with a minimum dosage of hydroxy. Lupus doesn't always mean that you will end of on lots of serious medication. Everyone's lupus is different. We all ahve different journeys and experiences.

Can I ask, have you only just been diagnosed? Are you on any medication?

I hope I've helped a little.

Wendy

[Hidden in reply to Wendy39]

I have not been diagnosed yet but my ANA came back positive at 1:40. My GP said he doesn't think it's anything. He still took my blood for dsDNA...I'm awaiting the results for that... I haven't really had symptoms except for hair shed, more than normal, and some fatigue...

[Amanda8701 in reply to Wendy39]

Hi wendy loved reading ur post becuz i could totally relate.. my mild lupus is also sun triggered

First signs at 14 then laid dormant till my third child each summer after that got worse.. no organ involvement jus seems more like my nervous system.. bloodwork is generally ok high ana elevated ds dna and elevated anti sm with antiphospholipid antibodies when i had all my testinh at 14.. these days its jus a high ana .. how frustrating it is to be in so much physical pain at times and have relative good bloodwork lol ..

[whisperit]

I'd be interested in the answers to this too.

I had no signs of illness prior to the summer of 2015, when I abruptly found myself getting breathless on my routine walks around my home. A few weeks later, I developed shooting pains in my hands and arms, which soon turned into sore and swollen hand joints, plus severe Raynaud's. After a tentative diagnosis of heart failure, I was seen by a rheumatologist and diagnosed with UCTD, and soon after by a respirologist, who said I had marked Interstitial Lung Disease.

I have few risk factors and I'm even the wrong sex (male!)

So I wonder if I have a particularly unusual presentation...

[milkwoman]

I was diagnosed with "mild" lupus in 2013, but started having symptoms 2+ years prior. I always just stare blankly at my rheumy when she calls it "mild". I know I'm not as bad as some but that term just seems to trivialize it! SLE affects me every day and it doesn't seem "mild".

I believe in the medical world, "mild" means little major organ involvement. But I'm not sure.

[Nikki246 in reply to milkwoman]

Mine classed as mild as I have no organ involvement. However I'm currently laid up on the sofa waiting for the Dr to ring as I'm in so much pain. Mine affects mainly my joints and muscles. I get a lot of nerve pain and fatigue too.

To me it really doesn't feel mild, and seems to be getting worse, despite the amount of medication I'm currently on. I've been taking Methotrexate for 4 weeks now so hopefully that will kick in soon. Really not looking forward to the summer, only had two really sunny days and I'm laid up already ☹️

[Wendy39 in reply to Nikki246]

You do feel "cheated" when they say mild. My symptoms didn't feel mild and it impacted on my life and my families every single day. Only a doctor could use the term and make the patient feel so bad.

[Barnclown in reply to Wendy39]

WELL SAID 👍👍👍👍

Any consultant who makes you think you've got mild lupus needs to read the BSR guidelines more closely. I still can't see how any responsible well informed & up to date rheumatologist could lead a complex patient like you to think their condition can be classed mild when their therapeutic daily dose of myco is at max level (that's 3000mg?)

🍀😘🍀😘

[Wendy39 in reply to Barnclown]

Yes, 3g a day of MMF. 6 x 500mg tablets. X

[Barnclown in reply to Wendy39]

🤷‍♀️ It is what it is!

🌷🌷🌷🌷

[1sam in reply to Barnclown]

Amen to that

[Barnclown]

Mine is classed "moderate"...the recently revised British Society of Rheumatology SLE Care Guidelines helped me a lot to understand the significance of the "mild", "moderate", "aggressive" SLE labels and the differences treatment protocols. Here is a link:

rheumatology.org.uk/include...

🍀🍀🍀🍀 coco

[lupie-Cathy]

I think the older you are the more likely you are to have mild lupus which is what I was diagnosed with in my late 40's ( though been trying to get a diagnosis of whatever since I was 17) As far as we can tell I have no organ involvement but I get the rash and get rashes in the sun along with the joint pain and moderate to severe fatigue and poly neuropathy, I also have an under active thyroid. I have "mild flares" ( don't feel very mild to me!) but so far all seems held in check by the hydroxychloroquine I'm on 200mg twice a day.

[Hidden in reply to lupie-Cathy]

What were your symptoms when you were younger??

[lupie-Cathy in reply to Hidden]

Fatigue, generally unwell,catching everything going, joint pain, various bouts of mumps and glandular fever. Never having any energy and low blood sugar. I knew I hardly ever felt well as you know what you should feel like from the good days! Very frustrating!

[Hidden in reply to lupie-Cathy]

I'm sorry

[CaliforniaGail]

I understood "severe" is when Lupus attacks internal organs. That's really bad news.

My "mild" Lupus was a pain to deal with the fatigue, but at least my joint aches have been well controlled with 400mg Plaquenil for several years.

THEN the Lupus flare from hell last summer, I couldn't even move from the fatigue and breathlessness and non stop dry coughing, sometimes convulsing to vomiting... and to top it with the worse case of Raynauds I've ever had, fingers felt on fire and so swollen they looked like they were going to explode. Several courses of antibiotics later, thinking it was an infection, then lung biopsy with diagnosis of Interstitial Lung Disease and Lupus assaulting my poor lungs. Courses of prednisone, then tapered down to 10mg a day for the past 6 months and Cellcept (mycophenolate mofetil). At the high end dose of 3000mg myco a day, I then had the worse lung attack a few weeks ago. Dang, immune suppressant with steroid didn't work for me. It is a little scary when you realize you're running out of options.

I finally have relief with being on 3 weeks of miracle prednisone, 60 mg a day... I feel like Superwoman on speed !! (Of course, I'm bouncing off the walls during the night too, but it is such a joy after always being exhausted for many months.)

Of course, that much steroid long term isn't good, but I am so grateful to stop coughing and have energy right now. I have hope that my next step in 2 weeks will work -- Rituxan -- a less toxic chemo drug that has a few success stories for Lupus and RA patients. Hopefully killing the B cells that initiate an autoimmune response will be enough to have Lupus leave my lungs alone. They will taper down the dose of the prednisone in the next weeks, but the doctor said it is likely I'll be on it for life. LIFE -- that's the bottom line and I'll bomb my body with whatever it takes and enjoy each moment I'm here. This week I was amazed how grateful and good I felt in the moment of sitting outside on the patio in the morning with my coffee. The birds never sounded so sweet or the flowers look so beautiful. LUPUS SUCKS, but it is teaching me to really appreciate the little things that I took for granted as I ran around in the rat race, going thru the motions and not taking time to smell the roses.

[milkwoman in reply to CaliforniaGail]

Soooo sorry you are gong thru this! See? When I read these kinds of experiences I can then accept the term "mild" for my lupus as I've not had anything quite as serious as this. I'm glad you are on the other side of it and the meds are working!

I completely agree... I take time to enjoy the "little things". Playing with our rescue kitties, eating breakfast with my husband, feeding the birds and squirrels, having music playing in all rooms of the house (and dancing if the moment moves me), breathing in fresh air. Lupus has given me (at least) that.

I pray you jeep getting stronger and stronger! Hugs.

[Hidden in reply to CaliforniaGail]

I'm so sorry you had to go through that!

[dgleds]

well I'm suppose to have mild lupus, and it makes things confusing I'd say...I never know if its one thing or another...I noticed symptoms of some sort back in 2012, but i also have hypothyroidism, and was post menopausing etc...Even the meds for things can casue confusion about stuff.... I was on plaquinil and steroids...dumped the steroids real quick, and plaquinil i asked to go off after 2 years.....Things seemed ok for last 2 years, but got some achey joints back....I have been taking high vitamin D for a while, no one checks levels..maybe its too high now, that also makes joints ache...My thyroid bounced around a bit, which can mimic other stuff....They never recheck, and cause im off the meds i dont get to see a rhumetologist....My doc looks blank when i tell her they thought i had lupus, as she is newish...

[Wendy39]

Hello. Just to update you on my own position. My SCLE lupus was said to be mild when diagnosed in 2013, as I had already said above. In April this year, I went to the London Bridge Lupus Clinic as I needed a second opinion and a treatment plan, I wasn't getting the help I needed locally and had been refused a 2nd opinion numerous times. Anyway, my diagnosis was amended to SLE. He told me it was mild. He knew what I was thinking from my facial expression. He said it is mild to me, as it doesn't effect your internal organs - lungs, kidneys etc. But I did make a point of telling him it effected the quality of my life every single day. He understood that. It's just the terminology used. So here I am with my mild lupus, on 400mg hydroxy, 3g a day of mycophenolate mofetil (max dosage, immune suppressant) and now 50mg of mepacrine 3 times per week, for my mild lupus. I guess we just all feel a little cheated by the term don't we. Hope you are doing OK.

[Amanda8701 in reply to Wendy39]

Good thing its such a slow moving disease sometimes.. i got 10 years to go before ill be in the clear from the chances of getting organ involvement.. perhaps it shall stay the way it is now.. hope u feel better soon with a good mix of meds its hard finding the right ones

[Wendy39 in reply to Amanda8701]

Hello again. The children are back in school today, after their summer holidays and I am finally catching up on some posts. I just wanted to say that, as far as I know, with a diagnosis of SLE there is no cut off point where the doctors can say, you have been clear for x years and so will never get internal organ involvement. As far as I know that doesn't happen and they cannot say that for sure. Organ involvement can happen at any time. That is why it is so important to be monitored correctly, comply with your medication and treatment plan, and self manage as much as possible, in order to prevent flares as far as possible and manage the risks. I hope this doesn't frighten you, that isn't my intention. I have just never heard or read about a doctor saying this to a lupus patient before. Best wishes. Wendy

[Sammi19 in reply to Wendy39]

I agree with you Wendy. I’ve never been told that and unfortunately what you’ve said is true you never get a clear spell or a time when you don’t get organ involvement. Lupus is fickle it does it’s own thing when and whenever it wants to. X

[Wendy39 in reply to Sammi19]

Very true. And all forms of lupus needs monitoring. I now run a support group and we have many members who had mild and stable lupus disease for many years and then suddenly things have become much more serious. None of us know where our lupus journey will go.