Having a really bad flare

Hi guys I'm having a bad time with my lupus etc....Went to see my gp a few weeks ago and he faxed my consultant straight away coz I am quite swollen and have high amounts of protein in my urine.My consultant rang me at 8pm last week saying I am to be seen asap and have blood tests done.I was on 7mg of prednisone and have had to go up to 15mg.I also take methotrexate 20mg weekly.She has also referred me to the renal team in Dorset.I'm so isolated and feeling so ill.Any advice is appreciated if anyone been in the same situation

7 Replies

  • Hi Lisa78, I've suffered with the swelling particularly in the legs, and had kidney failure in the past too. The biggest problem though has been the feeling of isolation because I had to retire early from a great job and give up driving. This week though I've taken delivery of a mobility scooter and sense of freedom is unbelievable!

  • Hi hun thank you for replying to my post.I get what you mean about the isolation.I've been unable to work for 10 years now due to various reasons to do with lupus and mctd.I broke my hip twice a couple of years ago due to damage caused by the steroids.I had done so well since but now feel beaten since I saw doctor.Got my rheumatologist on Thursday

  • Hi

    The same thing happened to me swollen ankles and frothy urine.

    I didn't know I had lupus but eventually went to GP and was called into hospital by consultant soon after. I then had a kidney biopsy and got diagnosed soon after. 60mg pred and immunosuppressants. 2 years on, I'm in remission and only go see renal consultant once every 3 months.

    Scary times but you must get it treated as soon as possible.

    Keep smiling ;-)

  • Thanks for replying to my post.It means alot to know I'm not alone.Not been on here much but need to be.xx

  • Well I was just diagnosed with it about a year ago and I am going through a lot of trouble. I am 26 and I have had 4 strokes and my doctors don't seem to care.

  • Oh hun I'm sorry to hear that.I was diagnosed in 1997 when I was 19.I have had a couple of mini strokes and have high signal lesions on my brain.I am also lucky to have a great rheumatologist.My eyes and bones have been affected by steroids as broke my hip twice.Where abouts do you live?As if I was u I would ask to be seen somewhere else as heard alot of people do that but please don't cope by yourself.Hugs

  • Have you got any Lupus Support Groups that you can attend so that you can talk to people who have the same or similiar illness to you instead of talking over the telephone or internet. Sometimes it helps to actually sit and chat to someone face to face and it is surprising what information you can all get from each other. There is also the Pain Management Programme which your Doctor can refer you to they are usually held at the hospitals. I have had acupuncture at the hospital and it really helped my pain in my neck and whole body. Anyway all the best I hope you get the support you need take care Lillian :)

You may also like...