Lived with an sle diagnosis for a year and the meds,only to be told she doesnt have lupus!

Hi all,just wanted to quickly let you know,and to make you aware. of the fact that you shoyld check out your lupus docs first!

My daughter wad dxd with severe systemic lupus a year ago,she had all the lupus meds,high dose steroids etc then to be told last week,het lupus doc has been suspended,she no longer has lupus,but she has vsdculitis,she saw a vasculitis consulant who said she had vasculitis,but he needed to have a discussion with his team as to which type.

Well four days later ,the nurse told my daughter,the foc says she doesnt have vadculitis maybe is was all just a bad infection she had had for years,and to top it all of,she had to come of all her lupus mefs which have helped her.

All the have said is that they will give her a skin biopsy but thats it.DISGUSTING! Treatment,well she. has told the nurse that she had been seeing every week that she wants her to tell them she is putting in a formal complaint,and she wants to see her heart specialist,and renal consultant and dermy so they can tell her what happens next,so now she is without a dxs and without meds for it.she already has a skin infection,wrll thats what her g.p thinks it is.Thank you for listening sandy.

9 Replies

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  • Sorry about the spelling mistakes! Sorry upset for my daughter ,bless her.sandy

  • BIG HUG to you and to your daughter.

    Glad your daughter still has a fighting spirit. File that complaint.

    No patient should suffer what your daughter has had to endure. File that complaint.

    May your daughter have her good health returned to her as soon as is possible.

    Be well ... both of you. May you both find peace of mind and happy days once again.

    Carry on strong.

  • Thank you Nouska,i really do feel for people who are finding it hard to keep fighting,the system is ridiculous,how can so many people be poor at their job.she is fileing that complaint with the help of a nurse that looked after her until all this rubbish happened.many thanks sandy.

  • Oh my god sandy that is awful. So they have said its been a virus all along? But how can they be sure of this? These diseases are difficult to diagnose, I do understand that, but to be treated like this by the medical profession is just unacceptable. Definitely get the complaint filed. Really hope your daughter is ok. Be strong, lots of love x

  • Very sorry to hear about your daughter.Unfortunately Lupus can be very difficult to diagnose exactly as I expect you may know. Many people have all or just a few, of the classic symptoms and they sometimes have to work on the probability of the illness, and in that case treat it as early as possible.

    I have several positive lupus blood results but not any definitely deciding factors, and only half of the symptoms. My consultant has told me it is a "lupus like illness" at the moment but that it could either stay where it is with no definite diagnosis or it could go on to develop into full blown lupus. No one knows. In the meantime I am being treated medication-wise as lupus, in order to help control the symptoms I do have. My consultants have been very honest and when they do not know have said so, which I really appreciate even though it leaves you unsure. At the last visit another symptom had appeared and I was told that it was looking more and more like it, but not quite...yet.There are so many immune-type illnesses and many cross over each other. but It seems your daughter is really in limbo. On the whole the NHS I find to be excellent, but when it comes to difficult- to- diagnose diseases, sometimes it can feel like they are working in the dark, but most will still be trying their best. I hope that your daughter gets some answers, a complaint will certainly make the hospital look at what has happened to her, investigate fully and hopefully something can be done about helping her to reach a diagnosis. Best wishes to both of you. Good luck.

  • Hi sandy im so to hear this

    Its wrong and it has an affect on your daughters life i know only to well about being diagnosed wrongly i myself was told after fainting i had epilepsy and suffered ten years of seizures taking upto 15 tabs a day and having 20 plus fits daily only to be told in 1990 i hadnt got it it was the drugs causing fits im in the process of writing a book but it will take a long time but like you i want to make people aware i hope your daughter is ok and it hasnt had to much affect on her xx

  • I just wanted to thank you all for replying,the worst part of all this. again is ,shw has been told to come of the meds that have finally helped in,and ud she has any problems she will have to go back to her gp and just go from there,he was never much help in the first place,now she has demanded she see her heart,renal and skin consultants to see where she goes next with them,there job will be made harder now as they were able to use lupus as an excuse for her heart,severe water retention,scarring on her heart and kidneys,severe skin sores from head to toe.here's hoping now she is coming of the meds she stays well,she doesn't hold out much hope ,bless her.

    All they said was it could hsve been a baf infection.

    I shall keep you all posted on her outcome.sandy.

  • I am absolutely staggered about how you and your daughter hav been messed around by the medical profession! To put it metaphorically - it seems as though few of them are able to "join up the dots" and liaise with one another. I was astounded when I last visited my Rheum Consultant, and she admitted that she "never has time" to communicate with GPs or read their letters concerning patients and relied on the patient to give her updates!!!!

    To come off meds that are actually HELPING seems senseless.....

    WHY is it SO important to label a "collective" medical condition? Can they not just treat the symptoms? Maybe this is too simplified an approach......

    I get so annoyed when they are unable to diagnose their patients- and "cover" themselves by saying it was probably a virus or infection!

    Just HAD to get that off my chest..... please keep us posted, and keep on fighting!

  • Hi Looby,just thought i would reply to your message quickly,i couldn't agree with you more,my daughter came of her plaquil,steroids and methotrexate and that wad 10 days ago.Well when i took her twins home yesterday after she finished wotk,i was upset to see,yes you know what i am going to say! Skin sores all over already starting lots of little blisters,big sores as well.If she is like that on the outside what is it like on the inside,bless her.

    She rang the rhumey secretary and she finally after a long conversation manage to sort out an app on thursday to have bloods done and a biopsy ,thats if they don't change their mind by then.I will keep you posted.Thank you again Sandy.

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