Lupus- does it get any better?

[mankyscotslass]

Mum was diagnosed 18 mths ago with this horrible condition...she was 61, had been misdiagnosed as rheumatoid arthritis for years. She was here helping out when i had my 3rd dc when she took a really bad attack, got rushed to hospital. Turns out she has lupus, which has left her with heart and breathing problems, as well as unbearable pain. She has been on morphine patches since, was in hospital for 3 months while they stabilised her initially, then has been admitted 4 times since then for severe flares. Everytime they drop her steroids and up her cyclosprin, she is really bad. In fact, she is bad at the moment, they may need to admit her again and administer iv morphine. She is under a leading specialst in this, and is also part of a study being done. But i am so worried about her because she does not seem to be really improving...being on morphine patches all day for the rest of her life is a worrying prospect....It dosen't help i live 250 miles from her,she lives on her own, my brother is overseas, and she wont move and i cant (dh's work, oldest just started school, finances too as a sahm)
What a rant, sorry, just really worried and fed up.

i don't know what to say sorry having no experience of this but i didn't want you to feel as though no one was listening (((((((((((hugs)))))))))))))

I don't know much about it, but I do know a couple of people who have it. I don't believe that there is a cure, but that it does flare up and then subside again and is "managed" with drugs.

Lupus UK may have some useful info for you

Manky i have lupus, not as bad as your mum by a long way, mine is managed with anti malaria meds Plaquinel, I get flares at times mainly if stressed. I was 42 when Diagnoised. I have a arrythmic heart from it, but most days Im fine work full time, but I do get very tired easily but am a CM so can take things at my own pace. Its not stopped me tho, only had 3 days off in 6 years so can be lived with. Hope your mum gets better soon.

Thanks, and thanks for the link.
got a phone call at luchtime from mum to say doc wanted to admit her, but she refused (stubborn) he gave her a morphine injection, and she has no memory of getting home. Her neighbours and friends have been in and out, her swelling and pain has improved a little, but she is still very groggy from the morphine, she has been very sick!
I know we need to learn to live with this illnes, auto immune disorders seem to run in my mums side of the family, her mum & 2 sisters have thyroid conditions...its just so awful that this illness can bring someone who was so full of energy so low...I have in the past had to call an ambulance for her while she was staying with me, against her will..have looked at that lupus uk site, thanks again

Mankylass how is your mum this morning?

Hope she is better a bad flare can get some getting over, I had a mall one on the Monday starting on the Monday of last week, and still feeling the effects of it. Mine seem to go in 5 day cycles my hands start to hurt on Day one by day 3 I hurt all over, find it hard to vocalise my thoughts, and am really tired, by day 5 pain is receding and brain getting back on track, but usually takes at least another week for the tiredness to go away.

Hi manky, i have Lupus i was diagnosed when i was 15! I get flair up's when i am incredably stressed in fact i ma going through one right now! I get excruciating chest and leg pain and reoccuring headaches and generally feel crud. I am not as bad as your mum by a long shot and it doesn't help that it is incurable and dr's don't know alot about it. I survive my flair up's with strong painkillers and they usually last about 2-4 weeks. I hope your mum feel's better soon.

God Charley I must get away with it lightly, I have only had a few flares that last more than a week, although one went on for about 6 weeks. what painkillers do you have, the Dr has switched me to Etodolac and Codine cos the last lot were making me sick, but dont think these are working so well, Have Plaquinel as well which made a Huge differnce, was finding it quite hard to walk far, (My hands and feet are effected the worst) before I started on it, can do fine now.

Hi, Mum seems a little better, the swelling is not so bad. They upped her steroids back up to 40mg, she was down at 15 after a year of slowly reducing the amounts.....the cyclosprin does seem to help a bit, its 3 months since she had to be hospitalized. She cant take the other anitmalarial for some reason.....she is on permanent 50 mg patches of morphine, to be changed every 3rd day. Other than that all they can give is parecetmol and extra morphine injections when required, because of the meds she is on the the heart condition.....she is actually under the care of the specialist where i live, so she travels up and down to see him, he is quite clued up aboput it, he has a really positive attitude and is determioned to help her, but it is such a long road....at least this is the longest she has gone in 18mths btwn bad flares

hi manky hows your mom feeling today? hope she lot better

FM, just saw this, sorry for late reply. Mum is a bit better now, but in her wisdom has decided to stop the cyclosporine as it was making her really ill. She is in some pain still, but able to move around. She is attending MRI next week to take part in a research study on LUPS, and will be seeing her specialist as part of that, so hopefully we will move forward then too. I just get so frustrated being away from her, but us moving is really not an option at the moment...argh....thanks again for asking!