Have you been told you have MILD !!!! Lupus ????

I have only been on this site for a few months, but the amount of times I read, mild lupus, is never relative to a sufferers opinion. I also have mild lupus and like other members, I question this. So has anyone been told they have severe lupus ? If so I feel for you as mild is bad enough.

[helenfirebird]

The term 'mild' is generally used to mean no organ involvement. I have mild lupus but my Rheumy checks for organ deterioration every visit just in case. So mildi might well not mean as you think but that. Hope this helps.

[lynzard]

Oh my goodness, it is so ridiculous isn't it. Take care and I wish you well. xxx

[Hidden]

My lungs and liver are affected, yet I'm still deemed as mild. Thanks for replies

[Purpletop in reply to Hidden]

May I ask how your liver is affected, please? Mine has had high function tests for the past few years, though no scarring yet. Hepatologist doesn't accept that it is due to lupus but rheumatologist is convinced.

Your initial question is a very good one - there are people here that have been through treatment rounds without success and still suffer, and those who mention lungs, heart, pancreas, stomach, skin (all organs) being involved. I'll bet they've been told they have mild lupus too. Ridiculous.

[Hidden in reply to Purpletop]

Hi purpletop, my liver is scarred through inflammation and meds have caused fatty liver. Am seeing liver specialist soon and 2nd scan on the 11th. My bloods keep tripling in enzymes. Apparently methotrexate can cause fatty liver. Rheumy is querying autoimmune hepatitis. Have been off strong meds for 18mths now but still high bloods. I read that not unusual to have raised liver bloods with lupus. But they do take notice when they triple and stay that way.

[Triscichick in reply to Hidden]

Methotrexate can damage the liver, which Is why my rheumatologist says, "No wine!" When liver enzymes are high, scarring can result, and liver function is impaired. I've been on MTX since September, and I have seen no improvement! My dosage was increased from 15 to 20mg per dose in Dec., but still, no improvement! My body just continues to hurt!

[Hidden in reply to Purpletop]

I have autoimmune hepatitis, a separate autoimmune condition which is rarer than lupus but which often goes together with lupus. I also have lupus, which affects my joints mainly. If you have anti-smooth muscle antibodies then you probably have autoimmune hepatitis. It is indeed alarming to read that the medication I am on to combat my potentially fatal hepatitis also induces liver disease!

[Hidden in reply to Hidden]

Thanks bitternwatcher, will take note of what you said

[Hidden in reply to Hidden]

By all means get back in touch if you are diagnosed with AIH. I don't know anyone else who has this and would be happy to discuss symptoms, medication etc. Good luck with the appointments etc.

[Hidden in reply to Hidden]

Thanks, I will. Having scan on 11th feb, but not had appt for dr yet. Is it a gastroentologist, for liver ?? Not sure of spelling.

[Hidden in reply to Hidden]

Yes. The specialist sub-branch of gastroenterology for liver is hepatology, but I see the senior gastroenterologist at my hospital. The good news is that AIH is a treatable condition with the right drugs. Good luck, and don't hesitate to be insistent to see the right people, it's sometimes necessary.

[lennox]

I have had a aortia bypass I have a tumor on my spine and phrephial. Vascular diease yet still told mild, along with every day aches and pains living on pain killers and other medication yet still mild lupus, but told by the hospital I'm a very complicated case ?? And no doctor in there right mind will operate on me unless it was life saving hence that's why i still have the tumour and it's being monitored ever 6 months incase it decides to start growing again, not sure what to make of that one

[Hidden in reply to lennox]

Hi Lennox, you are the exact example of what I mean. Sounds very scary. Thanks for reply and please take care

[zebedee01]

I haven't been told whether mine is mild or what, I can't seem to get an answer. But something that does stick in my head that my rheumatologist said was 'I'm not surprised you are feeling down, your condition is very serious' That has stuck in my head ever since, but I didn't dare ask further questions at the time

[Hidden in reply to zebedee01]

One tick in the serious box, zebedee. Hate to feel how you must suffer. Thanks for reply

[Hidden in reply to zebedee01]

Thanks zebedee

[Carcrashgal]

I have 'mild drug-induced' lupus ("if you even have lupus at all") said the rheumy, though the rest of my medics disagree with her; as far as they're concerned it *is* lupus (and Connective Tissue Disorder); luckily for me I have no organ involvement (yet). But tho my rheumy scoffs, my GP does not (especially after my recent flare-plus-pleurisy event, which has at least firmed up the lupus diagnosis once and for all). And you are so right: 'mild' is not the word I would use, especially on a bad day! But when I read this forum, I realise that actually, compared to some people here, I do have it mildly. So like 6161, my heart goes out to all 'severe' sufferers. Hang on in!

[Hidden in reply to Carcrashgal]

Thanks carcrashgal

[Heatheric]

My rheumatologist talks about my disease being 'quiet' (at the moment and long may it stay that way!) - that seems more descriptive to me. I know its there and have minor flares but not the major symptoms that many of you have.

[Hidden in reply to Heatheric]

Thanks for reply heatheric

[Slowmo]

I've been told 'mild' lupus - debilitating symptoms, retired aged 45 due to ill health and meds have caused a 'fatty liver'. So glad it's mild, not sure I'd cope with anymore than I already do.

[jlockhart67 in reply to Slowmo]

Did you find it easy to get retirement due to your lupus? I am 46 and struggling.

[Slowmo in reply to jlockhart67]

Hi, I was advised by occ health in workplace to apply for it due to two lengthy absences of several months, on the 2nd absence we applied for it. The occ health supported it and I discussed with my rheumy who also supported it.

The assessment by the 'independent' medical assessor was tough though, and I was ready to complain about his attitude because he minimised my symptoms to that of 'being tired', and when I detailed my symptoms and history over the past four years he replied 'you can't retire because you get mouth ulcers'! I was livid, but ultimately was awarded an interim retirement package for 3 years which released part of my pension and will be reviewed after 3 years to determine whether to retire me permanently or to extend the interim period or deem me fit for work. In short, not easy, very stressful, I just knew I couldn't work any longer having gone part time in an attempt to cope (this actually evidenced my attempts to remain in work).

But totally advisable if you have medical support - discuss with your consultant and ask their opinion if they will be supporting you.

Let me know how things go. Sorry for the long reply.

[Triscichick in reply to Slowmo]

I'm told I have mild Lupus, as well. I often think, "if this is mild, what are regular Lupus patients going through? I'm so sick of the pain, the fatigue, and the depression! It seems that the physician's answer to everything is drugs!

[tintin49]

I have been told I have mild lupus. I have lots of hair and only a little skin problems in the summer. stopped taking the hydroxyl for several months. now on it a few days. last bloods said that lupus is not active at all "compliments and double stranded were normal in septmber. have not a clue what that means. so am I better I don't feel it. tired stiff. now on a pain management programme which says that our nerve endings are backfiring and sendin out wrong messages.

anyone have any suggestions

[Hidden in reply to tintin49]

Sorry tintin, don't know either. We all seem to have a lot of probs with our mild lupus !!! Thanks for reply

[jacqueline121]

I have never been told if it's mild or not. I also was diagnosed with auto immune hepatitis around 15 years ago, and have a kidney problem called renal tubular acidosis, as well as Sjogrens, fibromyalgia and have had a perforated colon twice, once with peritonitis. I've just had surgery to remove part of my colon and it has caused a big flare. I should be having another surgery but they now can't do it until things settle down. I have been on immune suppressants and steroids for nearly 20 years and don't work any more as I always seem to have something going on.

Even before organ damage it was hard to live with the Lupus. It defininately did not feel mild. I don't think doctors know all that much about immune disorders due to lack of research and money. That's what one doctor told me anyway.

Usually to find out if you have auto immune hepatitis they do a liver biopsy. Good luck. I hope they get you sorted out.

[Hidden]

Thanks Jacqueline, hope you get better soon. Sounds like you have had your fair share !!!