Newbie in need of reassurance

[Loopylooby]

Hi guys

I have been coming back to your blogs for the last two months after stumbling onto the site and have now signed up.

I am 27 and last week was diagnosed with 'lupus like' symptoms. I have had a mystery illness since the age of 9 that no-one had been able to diagnose and it came and went so i learned to live with it.

In February I had a UTI and was taken to hospital in an ambulance due to v high temperature and pain. Was eventually discharged after being on drip for a while with antibiotics. The week after I had a red rash all over my face and still could not get out of bed. This was the second red rash as i had had one about 6 weeks earlier.

My mum has APS and recognised the rash and told me to see the GP. I asked to be tested for lupus and she referred me to a Rheumatologist anyway because of my symptoms.

Was v nervous before seeing Rheumie later that week as i expected him to tell me there was nothing wrong with me or that it was not what we thought like all the other investigations i had had.

He was totally lovely, got my history down, felt my hands and feet, saw pics of my rash etc.. He said that my bloodwork was ok apart from anaemia, v low vit d and low folate.

He said for this reason he is calling it Lupus like because to meet the diagnostic criteria (apparently put together for drug research purposes only) the bloods need to be positive (or is it negative?)

He gave me a steroid injection and put me on 5mg of prednisolone along with vit d injection, folate tablet and told me to get vitamin supplements.

Since then i have felt like a different person and have managed to go bk to work after having 5 weeks off due to the flare.

But I'm left with soo many questions!

Has anyone heard of 'lupus like' and do you know if it develops into full blown lupus? My symptoms are red rash, constant fatigue, arthritis pain in hands, feet, hips and knees, constant low grad fever, migraines and sensitivity to the sun. I have also been battling with nausea for the last week.

Any information or advice you guys could give would be great. Sorry for the long post but at the moment i feel I have no-one to talk to. Xxx

[Loopylooby]

Forgot to add that I also have raynauds just to top it off!

[Sher78]

'Lupus like' is a term they LOVE 2 use if they r pretty sure u have an autoimmune illness but aint sure which 1. Lupus (if u have a good old read of the symptoms etc) mimics every bloody other condition going & also overlaps with so many. This makes it an absolute pig 2 diagnose CORRECTLY.

U're rheumy sounds very knowledgeable, however, he is also incorrect. I assume the blood result he is talking about is the ANA. Usually, lupoids have a positive ANA....HOWEVER it is not impossible 2 have full-on lupus with a negative ANA, I myself have had negative ANA, AntiRo everything while in the middle of a major flare only last year & I was diagnosed 19 years ago. There IS no one SINGLE test that will say 'Yes, u DEFINITELY have lupus' & I will argue till I take my last breath with ANY1, no matter HOW qualified they r, who disagrees. If u search the net, u will actually come across articles 2 back this up.

The criteria he is on about I expect is the 'standard'. Basically, there is a list of symptoms/test results (can't remember how many) & 4 them 2 POSITIVELY diagnose lupus, u have 2 meet 90% of the things on that list (or something like that) however, the list is quite old & hasn't changed since I can remember but the thing also 2 remember is lupus is not a 'Text Book' illness, we don't ALL suffer in the same ways & don't all exhibit the same signs & symptoms, plus if u have secondary conditions (other Auto illnesses such as Raynauds etc) u can have a right mix of symptom making it difficult 2 pinpoint & name which specific 1 is the 'Primary' or 'main' condition etc. For example, the problems u r having can also b associated with vasculitis

We're all here 2 help so will share what we can

Just checked & apparently u should meet at least 4 of the following criteria. Check out this link 4 more info

lupusresearchinstitute.org/...

[Loopylooby]

Thanks sher78 that's really helpful. In my mind i know it's lupus as i have virtually all of the criteria but he seemed to be saying that because my ANA was negative he couldn't give it the name 'lupus'.

I have so many questions and am going to see Rheumie again on Tuesday so he can check my progress on the Pred. It has pretty much sorted me out save for swelling, still lit sensitive and have extreme nausea. The nausea is really getting me down and I don't know if it is a symptom or a side effect!

Thanks for replying xx

[Sher78 in reply to Loopylooby]

No problem. If I was u, I'd print out this link & take it with u Tuesday.

lupus.about.com/od/typesofl...

Like I said, blood tests aint the 'Holy Grail'. U're ANA can change from day 2 day, things like meds, infections, viruses can alter it, any Haemo or Immunologist will tell u that x

[Sher78]

hopkinslupus.org/lupus-test...

[chrissiij]

Hello!

Your situation sounds similar to mine. I have had random symptoms for the past 20 years and only recently for referred to a rheumy after 3 years of a dermatologist treating me for a random auto-immune rash. The rheumy was able to look at me as a whole and say that I was "a bit loopy", ie probably lupus but they can't prove it, so I have been taking 7 lupus-related tablets a day for the past three weeks and am slowly getting better. My symptoms were reynauds, skin rash with igG and C3, excruciating joint pain, sun sensitivity and an irregular heart rate. Bloods have always come back negative, except for anaemia and low ferratin. I hadn't even realised how tired I was until rheumy mentioned that any tiredness I felt was also due to it. I thought I was tired due to lack of sleep due to joint pain and / or laziness!

[Loopylooby]

Chrisiij - how do you feel about them not giving you an exact diagnosis? Looking back i have had all my symptoms since age 16 but each would be in isolation and then come and go. It was only in feb that I began feeling v unwell and after pushing myself too hard ended up in hospital. It was then that the rash and joint pain joined the fatigue, hair loss, temperature, swelling and waking up with headaches in the morning due to the sun. Glad my Rheumie is finally giving me some answers after being prodded and poked for so many years with test results coming back negative for endo, crohns, sleep apnea you name it! I'm just a little confused with he diagnosis - is it lupus or not and can it get worse and go for my organs? I'm happy with the meds I'm on because they are treating symptoms v well other than swelling and nausea and I guess I should be thankful he will treat my symptoms and not get so hung up about what it is.

[Shann07]

Hi, I suffered years of mystery symptoms starting with bad rashes & painful thumbs in the morning lol! That was when I was around 18, i was treated for ecezma which it wasnt, then fell pregnant at 25 yrs and boom! it snowballed from there. I ended up on life support and lost my baby at 30 wks, all due to undiagnosed APS. Next year pregnant again same thing happened but i didnt get ill my baby died again though, heartbreaking. Fast forward and after 7 years of joint pain, hair loss, raynauds, i was eventually rushed to hosp via cardiac ambulance as lupus had started attacking my heart & lungs and has done alot of damage. That was 2 years ago im 35 yrs now. I just regret that i didnt shout louder that i knew something was dreadfully wrong with me, i was still on waiting list to see a Rhemmy when i took critcally ill. Try to be thankful your Rhemmy is one step ahead of your lupus like illness, and you are on treatment, becsuse this will limit the damage it can do and hopefully settle the disease entirely. Dont worry about not having a formal lupus diagnosis, as long as your getting better and see Rhemmy regularly. I just wish i had that oppurtunity before i lost my babies and suffered years with devastating organ damage because if someone had of monitored my symptoms more closely things could maybe have been different, take care.

[Loopylooby]

Sophie I'm so sorry to hear about what you have been through, it must be devastating. I am very thankful that my Rheumie is v good and I'm finally being drip fed some answers. My mum was diagnosed with APS some years ago but went through 11 dangerous miscarriages before they worked out what was wrong. She had some pioneering treatment that was initially sneered at by some GPs and specialists but immediately afterwards went on to have my 2 brothers and my sister. I hope your condition is under control now and I will definitely keep your words in mind x

[Shann07 in reply to Loopylooby]

Thats amazing your mum had 4 successful pregnancies despite her challenges she is very blessed. I too am blessed as i went on to have 2 more healthy pregnancies, both treated with aspirin and clexain and i count my blessings everyday i got the chance to be a mum! Despite all ive been through im doing really well, my lupus is well controlled at the mo, it took 5 wks in hosp, with steroid infusions, blood transfusions etc, but they put me back on my feet, thankfully! Think positive its brillant you have a good Rheummy who is beginning to see a whole picture with your symptoms and you are one step closer to a full diagnosis. Like so many some people just think its all in our heads including GPs, im glad i can now say to people you see i really was sick and not just a moaner! My mum thought it was postnatal depression! Enjoy your day x.

[Loopylooby in reply to Shann07]

x

[chrissiij]

Hi Loopy, I'm actually ok with it at the moment as for the last two years I have actually been taken seriously. As a child, I had asthma and eczema and any other symptoms that came up after that were treated as though they didn't exist and I was made to feel like a hypochondriac and my mum an overbearing mother! When I developed a nasty rash on my back and upper chest in my mid-twenties the GP was stumped, although he said it's probably eczema and just gave me topical steroids. When I was 28, I got private health insurance and so got myself referred to a good specialt who thought it was dermatitis herpetiformis and he gave me dapsone and told me to go gluten free. Giving up gluten certainly helped me to feel better but rash stayed put. I then changed specialist as other hospital was a bugger to get to and new specialist suspected SLE overlap but nothing showed in the blood - only skin biopsy. Regardless, he gave me hydroxychloroquine and cimetidine and told me to stay on the dapsone. Last month, I complained to him about my excruciating hip pain and he prescribed amitriptyline and sent me to the rheumy who told me I was probably a bit loopy and gave me meloxicam. He has sent me for bloods, the results of which I will get in a couple of weeks.

Sorry for the essay - I just wanted to show you why I am currently happy without the full diagnosis. He has confirmed that I am "a bit loopy" and that, for me, is better than saying he hasn't a clue.

[Loopylooby in reply to chrissiij]

This sounds v similar to me! Asthma and eczema as a child. Mystery illness appeared around ago of 9 and I was constantly 'run down' and being taken to docs. Always a pale and sickly looking child. Always having 'growing pains in my joints particularly knees'. My mum had me in and out of the doctors so much it was ridiculous but they just said i was suffering for some kind of virus. Am grateful my Rheumie has taken action as had been avoiding going to the docs every now and then because I felt like a hyperC!

[chrissiij]

You are my mirror! I was also pale and sickly. Even work colleagues called me a hypochondriac (and they weren't teasing - just being rude) so I felt pretty crap about myself. I also have water retention in my legs and got taunted at school because of the lack of shape around my ankles. Well, I'm 32 now and past comments do still sting, but I am a lot happier nowadays.

[Loopylooby in reply to chrissiij]

It's so amazing to finally speak to people who understand! My v best friend is excellent but I try not to 'dump on her' too much as she has her own struggles. My other friends try their best but simply don't get it, and why would they if they don't live with it?! So a big thanks to all that have responded - glad its not all in my head!