All very new to me!

I have recently been diagnoised with Lupus & today started on treatment of a 2 year course of MMF, 6 months of steroids, 6 months of antibiotics & 6 months of a vitamin D suppliment! Am finding the whole process quite scarey!

My diagnois came about when i had flu & my hands swelled up after numerous tests to discover why i was loosing protein in my water my consultant was convinced it was lupus & 3 weeks ago i underwent a kidney biopsy which confirmed lupus in my kidneys! I had never heard of this condition until i was told i had it!

Although people say i look well i get very tired & sometimes i feel i could sleep forever, my bones in my feet & fingers ache as do my legs! I will turn 40 in October & have gone from being on the go all day to having to slow right down! Which is not always easy when i have a 7 & 5 year old!

I would really appreciate any advice people have in coping with this illness.

Thank you for taking the time to read this : )

10 Replies

oldestnewest
  • Hi hun,

    I am afriad it does seem scary. The best thing I could say is do your research and dont be to scared about the information you find. Some will be relevant and some things wont. Is is a disabaling as MS and other auto immune disorderes. I was told you have to adjust your life a bit and then overcome your problems by trying to do things a different way. its hard to rest with little ones. I have a 5 year old and she is like a tasmanian devil on go and want to do so much and I cant keep up. I am 43 and have Hughes. Im under more investigation for Lupus and other auto immune disorders. Im struggling with many symptoms like you. Ive bought a walking stick to help me with my balance and because have gyni issues going on in pain most days. I get the being all singing dancing and going to this person who cant even get out of bed with out some pain and stiffness in joints.

    Get all the leaflets from the Lupus. rog site as they are really good. There are others on here might be able to help to.

    Any help I can offer please email me.

    Andrea x

  • Thank you very much for your reply & offer of help it's very much appreciated.

    So sorry to read about your illnesses & wish you the very best in any recovery you can achieve.

    Thanks again Andrea x

  • Education does help you come to terms with your illness but don't expect to accept it all at once. I was very fit and healthy 5 children, divorced and running my own successful business that l had built up over the years. I had never heard of Lupus and by the time l was diagnosed had severe kidney involvement and was fighting for my life. Took me a long time to come to terms with the treatment and complete change of lifestyle. If anything it has made me an even more determined person if in a somewhat different way, it's amazing how we can adapt to circumstances if we stay positive - but takes lot's of practise ! Talking to fellow lupies has been the biggest help for me. I am on lots of medication and with time and good consultants and care things will improve. Life may be different now but still appreciate the small things everyday now much more than l used to. Take your time in trying to adjust and go easy on yourself :)

  • My husband said last night we all have to accept that our lives will have to change & he's right! It's going to be very strange for me as i've always been on the go busy busy busy but recently i & my husband have both noticed that i've slowed down i think my body is telling me i need to!

    Thank you for replying to my post it is comforting to know i'm not so alone with this & i mean that in the nicest possible way : )))

  • What is mmf treatment?

  • MMF is the short name for Mycophenolate Mofetil tablets

  • we never abbreviate the drug name to mmf so its a new one.. we are also brand specific in fillling precriptions as the theory is patients shouldnt switch brands. How are you getting on with this treatment?

  • Only started treatment on Wednesday so it's a little early to say at the moment!

  • hi, all I can say is that your children will adapt with you. Don't knock yourself out trying to do the things you used to or beat yourself up about not being able to do them as that leads to depression and solves nothing. You can still throw a ball sitting down or read, colour, cuddle from your bed. All the best :-):-)

  • Thank you : ))

You may also like...