I cant believe how helpful this has been for me. I was diagnosed with Lupus SLE and Hughes in 2003 after a string of illnesses and feeling so unwell.
I had a miscarraige in 2000 and was told it was just one of those things but after getting a DVT in 2003 they diagnosed hughes but said i did not have lupus. I had a healthy baby boy in 2005 due to treatment with heparin for 10 mths thank god and felt wonderful during pregnancy it was then my consultant said i think we should re test you for lupus as characteristically patients do feel good during pregnancy but I developed another DVT and that got postponed. Then after he was born soon after i developed another DVT and then stomach problems which have since been diagnosed as ulcerative colitis (which is another auto immune disease im told). ALL THIS AT 27, OH THE SHAME OF A BOWEL PROBLEM AT MY AGE!!!
Anyway long story short after reading about the great mr Hughes on here I demanded a 2nd opinion and hallelujah I got one!!
The clinic proved lupus SLE alongside hughes and I finally get to see my doc on Friday for treatment!!!!!!!!!!!!!!!!!
Oh my God I cant wait I am praying that whatever they give me will stop me feeling so old and worn. I hate my body at the moment and its killing me that I cant play with my toddler due to utter exhaustion.
But I have so much I need to know if you can help me at all.
I'm scared of what I have read on the condition so far. I was given details of lupus and now need to know what the chances of ending up in a wheel chair are? This has scared me witless. And this wolf like rash, will it ever go away? And the pains, are they treatable? Can I pass this on to my kids? Will it kill me?
Which is worse the SLE or the Hughes? Im sorry if im not making sense I just feel the need to educate myself but the sites online just seem to be so hard hitting I would prefer to hear it from someone who is going through this too. Are you all ok? Are you feeling well? How are you being treated? Can I have more babies?
All that sort of stuff. Please help me if you can just by letting me know your experience also my partner, he really is such a lovely man, but I think he finds it hard to cope with the fact I am so useless at the moment. Daily tasks are so hard and leave me wiped out and Im always getting bugs and well ive already mentioned the bowel thing (God Im embarassed) has the bowel thing happened to any of you?
Also I am hypertensive is this related? And do you guys have huge pupils too? If I am accused of drug taking anymore I intend to hit someone!!!
Anything you have to share would really help me although I have had this almost 4 years technically I didnt know til last week so I really am clueless. Unless you think its better that way? I dont know.
Dear Mel, Welcome!---but I'm sorry about your problems that have led you to this site. And the bowel thing? You are SO not alone. I was the GI queen of my county, I bet, from age 25 to age 47. I had the invasive tests repeatedly & was told I had a "functional" problem, rather than colitis. I was on various GI meds for many years, but none really helped. Then I started getting new problems (urinary problems, migraines, rashes, pain, fatigue, fevers, anemia, etc.). It took too many years for my local drs. to suspect lupus.
Which leads me to a question: are you sure it's *ulcerative* colitis? If it's NOT, perhaps being treated for the lupus will help your GI issues. Here's a "joke" (on me, alas): I have not had one single GI bout since starting the antimalarial I take for lupus. My best guess is that my GI problems were lupus-driven all along.
Here's some good news: many people with lupus remain pretty mild. The dividing line is really whether a person has major organ involvement (heart, lungs, kidney, CNS, etc.) Antimalarials are the standard therapy where major organs are NOT involved. In contrast, for people with major organ involvement, steroids &/or immunosuppressants are prescribed. And today there are a variety of meds & more medical knowledge than in the past.
If you live in the U.K., look for books by the same Dr. Hughes you cited. He's world-famous & he writes very clearly. But, as you read along, don't assume that everything that is possible in lupus will happen to you. It could even turn out that all that will happen has ALREADY happened.
Anyway, I'm really glad you're on the right track & this close to getting treatment. I hope you keep posting here: we're very good company & have a huge variety of experience. I send you best wishes. Sincerely, Vee
Sorry you need to be here, but as you've noticed, there's a wealth of information and experience here and all are so helpful, informative, encouraging, and kind!
I was diagnosed in 1999 and have experienced mostly mild symptoms, arthritis aches, and fatigue. I have also had what I call "bathroom days", when cramping sends me there 4 to 6 times in as many hours, then I'm fine. I could find no rhyme or reason for that and at present, it's stopped for whatever reason. At the moment, the lupus is fairly quiet, too, and I'm appreciative!
Since you've had a miscarriage, I suggest you read the sticky about APS at the top of this thread. If it sounds familiar, print that and take it to your doctor.
If you can write up something for your new doctor telling about the chronology of your symptoms or if the new doctor can get copies of your old medical records, that will help in the doctor understanding what your course has been. Lupus is a help-yourself sort of disease, I think, and your doctor needs your input about your symptoms and any information you've gleaned on-line or from books should be considered. Hope this new doctor is helpful!
One unwelcome fact of lupus is that most of us have a worsening of symptoms after being in sunshine. Sad, but true. You'll probably feel lots better if you avoid being outside in the heat of the day (11am to 5pm here in eastern US), use SPF 45+ sunscreen, and you also cover up with a broad brim hat, long sleeves, and slacks. Staying out of the sun will let your facial redness fade away, too. I know you have a toddler, but if you can play outside and time your errands to be in the early morning and late afternoon, covered or in the shade you may feel lots better soon.
Someone is usually here or will be along soon, so come back!!
Thanks guys for that fell better that you are here.
Its interesting what you say about the (ahem) bowel thing and I will mention that when i go on Friday. I already know I have APS abd take asprin for that at the moment though I just had a screen done monday to see if i need warfrin. Hilariously though my GP just called and said that I need to have it re done as my blood coagulated within an hour so couldnt be tested, he thinks ill need the warfrin lol.
Symprtoms I have had have been horrible. First there was the lost baby which was BAD! Then i moved abroad to Cyprus from the UK (Bad move but I didnt know then) Whilst there it was then I started to get what i could only describe as a bit off colour. Aches and pains and rashes that would come and go though my mum tells me that since I hit 16 I have had the butterfly rash none stop i used to conceal it now i realise theres no point as it just looks daft. 3 layers of make up gives people the wrong impression about the kind of person you are hehe.
But It wasnt til 2003 when i feel v v ill that the tested me. I was just walking to the tube on night when my legs gave way it was sooo embarassing I tried to tell people i wasnt drunk nor did i take drugs (damn my eyes) and they called an ambulance. By the time i got to hospital I was writhing in pain and one of my legs had ballooned so they did a D dimer which was positive. Thats when they tested me for APS and referred my to a rhumie.
By then my whole body was a mess and I was vomiting and my urine was infected all the time I had sores and just wanted to die it was awful they gave me steroids and immuno's and I started to come to. They also gave me kapae and arcoxia fro pain which helped a lot.
Then I moved and never saw anyone again til I had my son silly really but once he was born things got worse but I didnt get treated it was odd. Now though they are sorting things. I would say the worst thing about it all is the fatigue and the tummy issues. It makes more noise than I do!!!! And thats saying something.
I will keep you posted but no one mentioned their eyes, do you have the same huge pupils?