Newly diagnosed

hi

i was diagnosed with SLE lupus about 4 weeks ago and was wondering if anyone could let me know what to expect over the next few months. i am slowly coming off steroids as advised by the doctors but recently ive been feeling a lot worse everyday and have started having really bad headaches that will not go away. is this normal?

also the left side of my abdomen keeps swelling up but i have been for scans and been told there is nothing on the inside that is enlarged or swollen. . . has anyone else had this problem during or after a flare?.

any feedback to this would be great - i have never spoken to anyone who has experiance with lupus before and are hoping to find the answers i need.

6 Replies

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  • hi there,i have had lupus 24 years.. not everyone will experience the same problems,On this site there are alot of things to read with the regards to syptoms,and medication, it might help you to read them....migrane appears to be one of the top problems and skin rash my advise to you would be if your tired rest listen to what your body is telling you, if you have any rashes the sun can be a problem and sun block of at least 50 is advisable to wear 24/7 come rain or sun, discussing with gp about pain relief if you require it ,stomach problems seems to come and go over periods of time, some due to medication and some to the disease itself,

    hope i have been of help you are not alone with this awful disease,

    stay well

    angiex

  • hello march2012

    i too was only diagnosed last january 2012 even though i have been unwell for a couple of years.

    the first thing i found the hardest was getting my head around the fact i had a serious disease,this is still an ongoing battle but as time has gone on and with lots of help and advice i feel better and ready to except what i have and ready to make some lifetime adjustments.theres no doubt that it has been very hard and at times i have had lots of tears with frustration.

    as angie said you do have to listen to your body that is very important because i have found if i ignore the warning signs i suffer for that, like today i woke up with swollen eyes with red sore rash because i went for walk yesterday and the sun came out for the whole time i was out and i never put sun cream on (as i didnt have it with me,never do that again) but in time you learn by your mistakes.

    take care

    debs

    xx

  • Hi, I was diagnosed 6 years ago with Lupus and UCTD. My symptoms came on suddenly and out of nowhere. It took me two years to settle on a medication that suited me and for the past 4 years I have carried on with life as normal, with some adjustments made for fatigue as tiredness seemed to be my only side effect. It is hard to get your head round and I have to say that after my initial diagnosis I looked lupus up on the internet and then went into complete denial and even told the consultant he had it wrong! My state of denial lasted until last September when I started with a 'flare' and I currenty have one lung that will only partially inflate. The symptoms of lupus seem to be many and varied and it can be a scary disease. Good luck with finding your most suited medication, it can make the world of difference.

    Take care, Angela x

  • Hi I was only diagnosed last June and still coming to terms with it and trying to fight it, I feel very frustrated that my own body is basically deciding what I can and cant do on a daily basis, I dont think some days I do to much but the body thinks differently. still trying to get the right combination of medication, and still having quite a high number of severe flare ups, There are so many varients with lupus, but I have not had a swollen abdomen, but have had cramp like ahces, take care, and read as much as you can to try and understand what we have

  • hii ..i have been diagnosed with lupus 6 months before.Initially i had symptoms related to my gastrointestinal function.I never get tired easily even after heavy work.But i should say things will slowly turn otherwise as lupus is a highly progressive,multisystem disease.Swelling in upper side might be just due to gastritis.Swelling in the upper right quadrant with mild pain might be due to some liver or gall bladder issue.I usually develop swelling in my tummy during periods,which is completely normal.See to that there is no tenderness in the stomach with pain or spasms.Plan out for a well balanced diet avoiding fatty foods.

  • thank you everyone, this information has been very helpful :) x

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