Still not controlled,even on meds?

Hi all,

Can you tell me how many of you on the forum are still not under control despite being on lots of meds?

My daughter has blood tests every week and seems to be going from bad to worse,now her nurse is trying to work out who she should see next,she sees a dermy ,cardiologist,kidney and neurologist,now no one knows why she has and has had for some time swelling on the. brain and spinal cord ,scarring on the kidneys and heart,severe water retention severe skin sores,high inflammation markers and many many more problems.

She has never seen a rhumey and has been told that she needs to see someone who can deal with things as a whole.

The nurse she sees every week is trying to get some answers ,as to who she needs to see next as her skin and bloodshed are getting worse not better.

Any idea's would be grateful,Sandy

7 Replies

  • Hi Sandy, it sounds like your daughter is really going through it. In such a situation I myself would ask my GP to refer me to somewhere like the Louise Coote Lupus Unit in London. It may be miles from where you live but reading their web page it looks like they have it all and if I had your daughters complex probems I think I would be down there!

    I've just got myself an appointment with a respiratory consultant at a hospital a couple of hours drive away from where I live as my local consultant was a complete waste of time.

    One point, if your daughter's conditions are due to Lupus then surely she should be seeing a rheumatologist as a matter of course? (Does anyone on this site not see a rheumatologist??) My lungs have recently become affected and it was the rheumatologist that rushed me through appointments, treated me and gave me 4-6 weekly follow up appointments, the respiratory consultant did literally nothing!

    I hope your daughter gets sorted soon and i would definitely push for a rheumatologists appointment in your local hospital if nothing else.

    Take care, Angela x

  • Thank you Angela,I did say to my daughter that I thought she should really see a rhumey,and I also said to her. maybe she should be seen at a lupus unit.

    I only know this from reading q&a's her on the forum.

    Her nurse ringing round to get advice from. her consultants.

    Everything takes so long,and whlie it does,my daughters body is suffering more,bless her.

    Thank you again for your response,i will let my daughter know.


  • Hi ya nanny 4 has she actually been diagnosed with Lupus and if so who diagnosed her. I too think she should be seeing a rhuematologist. I haven't been formally been diagnosed yet it is such a long process but been put on meds and they finally seem to be working. For months I felt so ill constant flares but now apart from feeling constantly fatigued joint pain and swelling I feel so much better than i did. Has your been put on any meds if so what? :-))

  • Hi there,yes she was dxd last year with systemic lupus ,multiple organ damage,cns also.

    She was dxd from bloods an multiple symptoms that she had had for years.she was dxd by a dermy.

    She has just had more bloods as no one can find the results for the lupus blood tests.She has seen many consultants but never a rhumey,it is felt that her case is to complex for our local rhumey. at our hospital.

    She has to have a chest cray tommorrow as she now has a chesy infection ,the nurse she sees told her today that they are going to send copies of her huge notes to three diffetent hospitals,I think in london to see if they have any ideas of who can help next.

    I know she is on upto 50 tablets a day at the moment ,including steroids 12,antibiotics 4000 mg a day,immune suppresants,anti malarials,anti inflammatories,anti histamines and others as well.

    Her dx is being questioned,is it lupus or lupus and a rare disorder that is being missed?

    I feel so sorry for her twin babies,working full time in a stressful job to pay the bills.


  • wow how she manages I do not know, Im finding it so difficult to keep up with Uni and have no children. Its a good she has support from you as that is very important. I hope she has some answers real soon, keep me posted on how she is getting on. x

  • Oh poor love I find it hard to cope when my two grandchildren come to visit never mind having twins and working !!! I can not work due to my lupus, fibromyalgia, back and neck problems !!!!! My heart goes out to her !!! Xx

  • Thank you olibop and collette,

    I do feel for my daughter,bless her,,I look after the twins while she works full time I also clean het house a little some days so that she has a bit of time to herself,she feels bad that I sometimes clean for her but ii really don't mind,her nurse is sending copies of her notes to 3 people she knows in hospitals in London,to see if they feel they could shed any light on her problems,or think they would be prepared to see her ,the nurse she sees deals mainly with m.s but also rhumey patients.

    Hopefully she will get rid of her chest infection and get some answers real soon.

    I will keep you posted, take care,thank you again,Sandy.

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