Anyone have experience of the illness lupus?

[PuffTheMagicDragon]

My sister has been very unwell recently and was rushed back in to hospital today for the second time in a week.

I found out about 7.30pm and have just come back from visiting her. She has been diagnosed with lupus.

I have looked on the web and have a bit more of a grasp eg its a chronic autoimmune disease, but I'm worried because she's my baby sister (age 30!) and I'm not sure what it means for her in the long term. I know no cure has been discovered as yet.

She had a miscarriage recently and I'm just so upset for her - more sh*t to deal with.

Any insight/experience gratefully received.

[Dingle]

Puff, how are you today?

I've had a quick chat with my mum, as I mentioned before, the kidney problems came about before the lupus was diagnosed so they may have been connected. My mum used to take malaria tablet for her rash, but in turn these could cause eyesight problems (!!) she doesn't have to take the tablet anymore but does occasionally have to used the eyedrops!
The condition is so complex and it can effect in so many different ways.
I take it you have looked here
My mum also mentions that she thinks there is a Lupus Association, couldn't find details at the moment though.
Will carry on looking when I have a chance. hugs Dingle.

[MarsLady]

Haven't forgotten you Puff. Just waiting on my sister to call me back. How are you doing today?

[Dingle]

I liked the idea of the online nurse here

[PuffTheMagicDragon]

Hi Dingle, I'm ok - my sister has a phone by her bed and I have talked to her after she saw the specialist.

It's definitely lupus and she has talked through with him a whole raft of symptoms that she has been experiencing for years. 10 years ago, she was gravely ill with something called HELP syndrome, spending a week in intensive care. She made a full recovery, but interestingly, the specialist said this may well have been related to her having lupus.

Yes, I've found that website, and another, lupus.org.uk which is very helpful. I've told her about these and printed off some info for her.

She will be discharged, with an appointment to return to see the specialist soon. In the meantime, she has been advised to be signed off from work and rest as much as possible for the moment. The specialist has said he cannot prescribe any medication until further tests indicate how the illness has affected her body, hence the need to take things very easy until then.

Whilst the news isn't great, she's relieved to have a diagnosis because she began to think she was going mad, having been told twice by A&E she'd had panic attacks and she was not physically ill. It's made her feel very vulnerable as she has collapsed twice in the past week with no "warning signs" whilst out shopping.

Her dh is taking next week off to be around for her which is good and I'm about half an hour away if she needs me. We'll see how things go-I've told her feet up and daytime telly for now!

[PuffTheMagicDragon]

Hi Marslady .

[MarsLady]

Hi Puff. Hey maybe I could introduce your sister to the delights of Sunset Beach on channel 5 at 10.30 am? lol There's an appreciation thread if you don't know what it is.

[prefernot]

Puff, I have a friend with Lupus who I will chat to if that might help? What was happening to your sister immediately prior to her hospital admission? And what other symptoms did she experience beforehand? I think outlining these is useful as Lupus seems to be a disorder that can affect people in a variety of different ways.

[PuffTheMagicDragon]

MarsLady.

[noddy5]

I was diagnosed with an unspecific auto immune condition 20 yrs ago some docs said lupus others disagreed.I have since had bouts on dialysis and have had 2 transplants the current one is still working well after 4 years.I get tired at times and colds etc hit me hard but I live a great life amd couldn't be happier.Your sister will soon learn to manage the lupus and not vice versa any questions just ask.\there are some v good medications now that can put it into remission for months if not years she has probably felt so bad up to now that with treatment she can only feel better.Immunology treatment although complex is advancing all the time according to my consultant.HTH xx

[PuffTheMagicDragon]

Thanks prefernot, all info will be useful to her. Lupus does seem to be an illness with wide ranging and varying symptoms.

In the last 3 months or so, she's been experiencing more and more things; an indication that things were accelerating I suppose.

Some of the things she's talked about include: light sensitivity (sunshine became unbearable), severe sweating, dizziness, hallucinations (at night in bed), extreme fatigue (like there is something wrong with her muscles and bones), a feeling of heavy pressure on her chest (like someone's sitting on it!), very dry mouth, inability to open and close hands and lift things, plus persistently very cold hands and feet, lots of mouth ulcers.

[PuffTheMagicDragon]

Learning how to manage the illness and pace yourself seems to be very important - thanks for that Noddy5, glad you are feeling well now .

[Dingle]

I'm glad the "shock" of it all is slowly sinking in Puff! It's just something else life throws at you and you wonder how much more you can take.
At least now she has been diagnosed it is something that you can all work with. I have heard so often that lupus seems so hard to diagnose-I suppose that's partly because it has so many different symptoms.
It looks like you have quite a bit of reading to do!

[mykidsmum]

Hi Puff, my aunt has had lupus for as long as I can remember, although I am certainly no expert, what I can tell you is, she is a very active woman, travelling all over the world for her job, constantly on the go. She often has 40 winks, but rests when she is tired, so she works with her body. My aunt is in her sixties and I think was diagnosed in early twenties, I don't think it has stopped her in life, just made her more determined. Sending you and your sister lots of love at what must be a difficult time xxx

[PuffTheMagicDragon]

That's really good to hear mykidsmum - someone who has been living with the illness for a long time and doing really well.

[gingernut]

Hi Puff, glad the links were useful. I can understand a little how you've been feeling since you found out your sister has this disease. My dh was diagnosed with Type 2 diabetes when he was 34 and I became quite stressed and depressed about it (he took it much better than I did - he is a much more laid-back person than me!). It is such a shock to be be told the diagnosis is of a chronic and serious condition, but hopefully it's the first step along the road to your sister feeling much better and being able to manage her condition. Take care .

[MarsLady]

CATted you Puff

[PuffTheMagicDragon]

Thanks gingernut and MarsLady .

[Dingle]

How's it all going Puff?
Hope you are all OK. Any more news on your sister?

[PuffTheMagicDragon]

Hi Dingle, my sister is doing reasonably ok - she's resting at home, her dh has taken some time off work to make sure she DOES rest.

She has some more symptoms showing, but she's coping with it all better now she knows what it is, although I don't think its all hit her yet IYKWIM.

Having had a long talk with the specialist, we now have a very strong suspicion that our Mum had lupus and it went undiagnosed. The specialist said that "there's a strong possibility" she may have had it.

We feel pretty devastated about this as if she did have lupus, a diagnosis and appropriate treatment may have saved her from committing suicide. No-one can ever know, it's another "what if".

I do know that the WHITE HOT ANGER I felt about her completely crappy gp (who I begged her to get rid of)is back with a vengeance. Lupus IS very difficult to diagnose, but aside from that his lack of interest in her as a patient was appalling.

Sorry I don't sound more upbeat, but I feel so haunted by all this .

[Dingle]

Oh Puff, of course it's going to hit you hard. It's no good in me saying don't think about the "what ifs!" its too late for you and I cannot imagine how hurt and angry you must be feeling.
It is very much the opion that I have though, it seems so difficult to diagnose. My mum was sent home from her gp several times with her tail between her legs and told to take migrane tablets. A few weeks later she was on dialysis!!!From what I can remember it wasn't until the rash materialised, well after the kidney problems, that lupus was even tested for.
I will attempt to say, try not to dwell on the past, that cannot be changed, no matter how angry you are feeling.
Use your energies on supporting each other. Thinking of you. {{{hug}}}Dingle.

[MarsLady]

I know that it's easy to say Puff, but try not to let it overwhelm you. Talk your feelings out, whether to us or to others.

[PuffTheMagicDragon]

Thank you both .

My sister hasn't "fallen through the net" at least and she will get the help she needs.

I feel even more cynical now though about some of the medical profession's attitude towards older women - if you no longer have dependants ie your children have grown up, I think often, you aren't taken seriously.

[DingleAlltheWay]

Have been thinking of you Puff, how is it going with your sister?
My mum has been really poorly,had blood test taken today, but she suspects it's her kidneys again. It is awful to see her like it. She just has no energy and I feel so useless! At least she is nearby now.
Hope you are all well and have had a good xmas.xx

[PuffTheMagicDragon]

Dingle - so sorry your Mum is poorly, I hope they can sort her out.

My sister is okish - she's had more of the vague symptoms recently - painful,swollen joints, extreme tiredness etc. She's quite down, as the dr will only prescribe paracetamol until the specialist advises specific medication. She needs something stronger for the pain.

She had her appointment with the specialist yesterday who ran more blood tests and said she should not return to work until he sees her again in a month. Seems to be taking ages to sort her out.
All the best for the New Year xxx.

[DingleAlltheWay]

Glad to here that your sister is being cared for. It may take a while to get things sorted but at least thing are hopefully being dealt with now.
My mum has been poorly for a few months now, put it down to flu jabs, colds,etc. The week before xmas I told her to see the doctor,it could be her thyroid,only the blood test will tell, but she wasn't due to see her kidney specialist 'till April- she will have to bring that forward too!
Take care, love Dingle.xx