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Anyone else with lupus?

(15 Posts)
rubytwokids Thu 30-Jul-09 03:17:36

Hi. Anyone else here got Lupus SLE and, if so, how do you cope? I am really suffering with constant arthritic pain at the moment and it is getting me down. It is debilitating and I can do only a fraction of the things I can do when in remission. I'm still waiting for my plaquenil to kick in and have been prescribed some naproxen as pain killers, but they have had no effect at all.

I'm almost out of my mind with it all. DH is responding by being critical, for all the things I cannot do. I think I understand why, as living with me and my pain is probably very hard, but if he moans one more time about me not getting on my hands and knees to clean the floor, so help me...

StealthPolarBear Thu 30-Jul-09 03:49:50

I didn't want this to go unanswered in the middle of the night.
Have no actual experience of lupus, but I know someone who has it. Does your DH realise how serious it is? Can he talk to your GP / other sufferers as it sounds as though he is being incredibly unsupportive!

mankyscotslass Thu 30-Jul-09 08:00:34

My mum has it, and I can really sympathise with you. She was diagnosed 3 1/2 years ago.

Have you got a Lupus nurse who can talk to your DH? My mum's is fanstastic.

I'm sorry you are in pain, mums is managed a bit better now, she is on permanent steroids, wears a morphine patch plus takes other tablets too. She is on the plaquenil, but that can take a few months to kick in. She is still in pain but able to function. It has definetely improved, in the last 9 months she has only had 2 bad flares, and only one of them needed hospitalising until they got the pain under control. You really need to get back in touch with your Rheumatologist and say you can't function with this level of pain. Are you on steroids? They usually work quickly for mum when she has to up the amounts, and although are not ideal are a quick fix. At the moment they can't get her off the low dosage she is on as as soon as they reduce them the pain increases, but they are looking at other things too.

Sorry for the rambling post, if there is anything I can get info on for you I will try, but I may be dipping in and out of MN as the kids are off and I am meant to be packing to go and see mum tomorrow!

rubytwokids Thu 30-Jul-09 21:39:58

Thank you so much, Stealthpolarbear and Mankyscotslass! Stealth, I think dh does realise, which is partly why he is as he is at the moment - it's scary stuff and I can understand him wanting to back off a bit. Just wish he wouldn't! He's not usually like it. Mind you, I am usually much better!

Mankyscotslass, my regards to your mum! I keep hearing about 'lupus nurses' but I don't think there is one around here. Maybe I should keep asking, until they break down and give into my demands. grin I was on steroids, but weaned off them (slowly) and onto plaquenil. With hindsight, I see that I was heading for a flare-up so the timing was bad. I probably can't see my rheumatologist until October, but am back to the GP tomorrow to ask for something else. I can cope, in the short term, with not being able to sew, do the garden, or crawl around on the floor with the dcs, but I'd like, as a minimum, to be able to just get by - you know, cooking meals, looking after the dcs - simple stuff. GP was a bit dismissive last time, but will give it another go.

Thank you for your replies, both of you. I really appreciate it.

mankyscotslass Thu 30-Jul-09 21:58:51

Ruby, get back to the GP! And ask at the hospital about the lupus nurse again.

Roughly what part of the country are you? Mum lives in Scotland and was misdiagnosed for years, only when she had a flare and I had to call an ambulance when she was here to help me with my new LO was she properly diagnosed!

Mum actually just had another flare last week, she never upped the steroids in time and it took hold, she had to have morphine injections to ease it while the steroids took action, even though she was already on morphine patches as daily maintenance. But that is the first one in a long time, so it is improving!

I hope you get some more help soon.

mortica Fri 31-Jul-09 09:51:01

Hi Ruby, my mum has Lupus SLE and I am currently under a Rhemy who is trying to get to the bottom of the problems I am having. At the moment I have been told I have a Connective tissue disoder but as to which one they are unsure as at the moment I have tested negative for Lupus but my mum did for years before she got a positive result. I understand what you are going through both with the pain and DH. Mine is the same sometimes and you feel like just throwing something at them grin.

Have a look a its a good site.

rubytwokids Fri 31-Jul-09 19:38:19

Thanks Mortica. I hope you get a diagnosis soon. I went back to the GP and he suggested I go back on the steroids (hurrah!), but reduce them 3 weeks before I see the rheumatologist, so we can tell if the plaquenil have worked by then.

Mankyscotslass, I forgot to ask about the lupus nurse (d'oh!). I live in Surrey, so a long old way from you. Sorry to hear that your mum has been so poorly.

campion Fri 31-Jul-09 23:16:26

Is your DH for real? Maybe take him along to your next hospital appointment for a bit of a ' discussion'.

Are you being seen at a centre which specialises in Lupus? If not, I would ask for a referral since, as you're in Surrey, you're not too far from London and its centres of excellence. If you're having problems I think you should be advised by an expert not your GP. It can take quite a while for the correct drugs for you to work but you really need regular monitoring and more than a bit of understanding.

I'm lucky in that my lupus symptoms settled down well after diagnosis and treatment ( steroids + naproxen)) and ( some years later!) I get few symptoms, no current drugs and just an annual check. However, it's always impressed on me that the dept has an open door policy and to get in touch if I feel anything's changed. I've had plenty of ups and downs along the way and am pretty sure my severe pre-eclampsia was connected to lupus, but no-one could say for sure.

The pain and weariness of active lupus are hard to convey to other people but I think your DH could try a teensy weensy bit harder. Maybe suggest that he wears a backpack full of stones for a day or two and tapes a couple to the inside of his hands and then does all the housework, including washing the floor on his hands and knees.wink

rubytwokids Sun 02-Aug-09 21:13:32

Gosh, Campion, that is such a good description of lupus! (Only you forgot the bit about being knee-capped first. wink) So glad to hear yours is under control. Did you do anything in particular, or did it just go that way?

I think I will ask to go to a specialist centre - thanks for the advice. My GP is good (mostly) but not that clued-up and my rheumatologist is always in such a tearing hurry that I can never really ask him anything. He'll act affronted if I ask, but sod him - he'll be in such a hurry that the feeling won't last for long. Ha-ha!

The steroids are beginning to make a difference. Yesterday evening I felt almost human. Today it went a bit pear-shaped again, but dh has a virus and I think my immune system was fighting that in the only way it knows how (overkill). I was stuck in bed and unable to move anything other than my head and I could wiggle my arms a bit. That was weirder than weird, but I'm up and feeling more or less OK now.

I really think my worse flare-ups frighten dh. He's great when it's 'mild but still not great', as he can be Mr Fixit and make things better for me, but when I'm in agony it is beyond his powers and I think he goes into denial. I say, 'think,' because he won't talk about it. hmm I think we both need someone to sit us down and explain it all. Chance would be a fine thing, but I will ask the hurried rheumatologist, when next I see him.

campion Thu 06-Aug-09 02:12:10

Yes, ruby, you'll need to be persistent if you feel you're not getting anywhere. Maybe google them yourself so you have a bit of info. Also I found Lupus UK a really helpful source of information and support. They have local branches too and keep up to date on research and treatments.

Yes, I forgot about being knee-capped!! I used to get awful bursitis ( water on the knee) whenever I knelt down and this went on for several years sad, being explained away as this or that. When I finally saw someone who knew what he was looking at (!) he leapt on that straight away and figured out that it was probably Lupus even before the tests confirmed it.

After the steroids had kicked in I was surprised by how normal I started to feel ie not exhausted and not in pain. It creeps up so gradually that you get used to it and , of course, you don't look ill. I think I was lucky in having a 'milder' form - though it didn't feel like it to start with - which has responded well to treatment and become less active as I've got older ( there are compensations smile). I didn't consciously do anything and it's still there so I wouldn't like to get too complacent. I have Raynauds because of it so have to be careful about keeping hands and feet warm. The trouble with Lupus is that the effects can be so diverse that you're often wondering ' is this Lupus?' ... and so are the doctors!

I'm sure your DH finds it all a bit bewildering but he'll have to get over that and inform himself ( with a little bit of help). A chat with a good Lupus specialist would be invaluable if he's up for it. If you're coping with children you really need practical help and moral support. You will feel better but you don't need your present stress.

Sorry to go on a bit - am up far too late, going away tomorrow, too much to do etc (!) but I wanted to reply before I went. Good luck smile

magso Thu 06-Aug-09 11:27:44

Hi Ruby! I do not have a dx of SLE ( yet- it seems I am a mystery but SLE is one suspect!) but can sympathise!! I also can only acheive a fraction of what I would normally do and have disgraceful floors!
Oddly Dh is also finding it very difficult - although he doesn't notice floors fortunately. I think he wants me back to normal!! I often cannot bear to be hugged (back trouble) which upsets my family - I suppose it feels like rejection - as does my need for extra sleep and earlier bedtimes. Oddly ds (sn)copes better than dh - but then kids do! Ds has learnt to run away as I cannot catch him sad. But he also covered me with a blanket when I collasped and calmy watched tv. I get exhausted very quickly and I think because there is nothing obviouse to see it is hard for family to understand! I was in hospital with a lung problem for a couple of weeks, but am still not fully back at my pt work although they have been very understanding.
I think I am annoying to live with - I keep forgetting things and have burnt 2 saucepans in a week!! I wondered about broaching the subject of extra cleaning help - but am nervous of the cost. Would that be a possibility for you?
I hope you find solutions that work and get you comfortable.

rubytwokids Thu 06-Aug-09 21:31:54

Thank you again, Campion and Magso. I am back on 10mg of steroids now and feeling so much better - almost human, in fact! Man, I love those steroids!

Magso, I am very forgetful and also ruined saucepans before diagnosis. And clumsy -there is a chunk of enamel missing from my hob, from when I dropped a jar of pasta sauce onto it. It is my lasting monument to lupus. I also smashed a jar of pasta sauce on the floor of Waitrose and they were very nice about it. It made an awful mess and looked like a crime scene. The dc were very impressed.

Can't afford a cleaner (aforementioned Waitrose-habit to blame, perhaps), but I think we just need to adjust to different levels of expectation, depending on my health. You're right though, Campion, it creeps up on you so that you are really ill before you notice.

magso Fri 07-Aug-09 09:53:56

Glad you are feeling human again!
Have steroids helped with the forgetfulness? I was on 30mg for 4 weeks (for the lungs was very ill so nothing much to remember at the time) but now off it and am very stiff and sort of not with it - forget where I am. Also am a bit wobbly - feel I might fall over and bump into things (and do sometimes).

rubytwokids Sun 09-Aug-09 22:07:23

Hi Magso. I'm not sure they do help with the forgetfulness. That just seems to come in waves - either I'm in vague control, or I haven't a clue!

Sorry to hear you are stiff. The steroids definitely help with that, I find.

No more jars smashed lately, although I did throw a pot of Duchy Originals yogurt across Waitrose yesterday and then had the cheek to hand it to the assistant in the dairy aisle and say, 'I've just dropped that,' before brazenly taking a new one. blush Can I blame that on the forgetfulness too?

magso Wed 12-Aug-09 16:56:27

Thanks ruby I'll just have to live with the dodgy memory then!
Has anyone else developed heart problems? Also can anyone recommend an sle specialist in herts? Also is there anything I can do to help myself while I wait for referrals etc as luck would have it both the washing machine and the printer have broken ( and hand washing with dodgy wrists has made my writting even more unreadable than usual).

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