If you could ask a lupus researcher one question what would it be?

I will ask the researchers some questions from here and post the answers later :o)

[marypw]

For many lupies, fatigue and exhaustion seem to be the worst symptoms, even when all blood tests are stable. Do think there will ever be some medications available that help with this symptom and if so, when??

Thank you!

[Hidden in reply to marypw]

Here's your answer straight from the researchers.....:o)

A. Our previous research confirmed that fatigue is one of the most debilitating aspects of lupus that has a major impact on quality of life. Our clinical trials have shown that regular gentle exercise, keeping your weight down (always difficult on steroids), a healthy diet and avoiding sleeping in the day in order to get a good nights sleep all help to reduce the effects of fatigue.

[marypw in reply to Hidden]

Thank you for asking!!!

[marcie in reply to marypw]

OMG I love your avatar, I had a cat just like named Wispurr

(here: i43.tinypic.com/2rr7094.jpg & here: i42.tinypic.com/20kp44o.jpg)

and was told she was an American short hair, like a British short hair and she was beautiful! do you know what your cat breed is? ...sorry to be OT, but I certainly do hope there will be fatigue busting meds available ASAP, though having gone 50 years already with SLE without them... don't know what I would do with them LOL... probably be jumping up and down with boundless energy!

[Krackerrette in reply to marypw]

Does that mean they tell you it's not active?

[Twdibwd Volunteer]

I gave blood every year from 1993 - 2002 approx, to St Thomas' Lupus Clinic, sometimes several phials. What I would like to know is, are the researchers any closer to solving the problems that Lupus creates at the roots of the condition? In other words, research into core solutions rather than treating the symptoms with medications.

[Hidden in reply to Twdibwd]

Here's your answer:

I think we are closer to solving lupus at the root of the condition as a result of our research. Lupus research at Guy’s and St Thomas’ is totally focused on the blood that patients donate and we are very grateful for this. THANK YOU for all of your donations! The benefit to the research is that we can study the patient samples directly and therefore everything we do relates directly to disease.

[Twdibwd Volunteer in reply to Hidden]

Thank you. Count me in for any sample taking.

[Hidden in reply to Twdibwd]

Great - I know the researchers are always after blood - like a little group of vampires lol....I told them they can have mine too!

[Twdibwd Volunteer in reply to Hidden]

Well I reckon with 20 years each under our belt we could be of use? I wonder how they would measure survival instinct? Or maybe it's our sense of humour that keeps us going? My Gran had rheumatoid/osteo arthritis and I'd see her laughing as she rubbed ointment into her knees. I'd ask her what she was laughing at and she replied " If I didn't laugh I'd cry."

I always wanted to be like my Grandma - I didn't know I had to suffer like her too! My cousin also had that wish and she got Grandma's bunions!

[Hidden in reply to Twdibwd]

Strange you should say that, I haven't seen vast groups of patients with other illnesses but amongst the thousands of lupus patients I've seen over the years they do seem to laugh at things a lot. Maybe they should do research into whether lupus patients also have as ens of humour gene that's also triggered when they get lupus so they can cope with it lol.....

[marcie in reply to Hidden]

I agree, and have lived with it for over 50 years now :).. and even my specialists have said that 'it is my overall good 'attitude' that has kept me alive this long' (as I have had serious organ involvement and been very ill several different times) and 'without a positive attitude patients don't do nearly as well, in their opinion' so there you go ;).

[Twdibwd Volunteer in reply to marcie]

Wow, Marcie, power to your elbow. 50 years, I am impressed there is no doubt about that! I thought I was doing pretty well at 20. Is that a record do you think?

[Carcrashgal]

What is the one thing lupus sufferers can do to most help themselves?

[Hidden in reply to Carcrashgal]

I once asked a lupus Consultant a similar question and without hesitation he said 'stop smoking' (if people do). I guess most doctors would say that to most patients, but as lupus patients lungs are at risk already it makes sense not to stress them even further :o)

[Carcrashgal in reply to Hidden]

Yes, good answer . . . so my supplementary question would be . . . if you do not and have never smoked!

[Hidden in reply to Carcrashgal]

Here's the answer:

There is no single change that patients can make. Rather there is a whole list of measures that patients can take to help themselves. Learning about lupus and its treatment will help understand the condition and adapt to its ever changing symptoms. Keeping appointments with GPs and specialists to monitor the condition and treatments is especially important in patients with internal organ involvement such as kidney disease. See also above advice on reducing the impact of fatigue and improving quality of life (MaryPW question above).

[Carcrashgal in reply to Hidden]

Thanks!

[poem]

My question is how soon does a positive ANA usually present itself in SLE for a diagnosis to be made?

Would it be positive in the very early stages/onset or does it only occur when fully fledged and severe?

My daughter (approaching 15, not started period) is showing signs of SLE;

permanent facial rash on one cheek,ear lobes sometimes rashing, heavy tired legs with a 'pulling' feeling in the hips and sometimes short sharp stabbing pain, Burning in knees when crouching. General fatigue, occasional single mouth ulcers. This has been going on for 10 months now, however her ANA has been negative on 2 occasions - ELISA 0.2 (0.03-0.69) negative if less than 0.7.

Her ESR and CRP have both been slightly elevated and her c4 marginally low @ 0.15 (0.18 - 0.55.).

Her DSDNA is 1.9 iu/mL (0.5-9.9).....

Thank you in advance for any help x

[Hidden in reply to poem]

As this is more a question for a doctor or nurse rather than a researcher, I'll see if I can find out the answer from one of them and post here :o)

[nanaber]

The question I would ask is how is it possible for your blood test to be good when you feel awful.

[marcie in reply to nanaber]

Heck yes it happens regularly for most autoimmune patients!!

Your labs don't reflect your feelings, they reflect your functions of your 'system'... like a car motor... which has no feelings; your system doesn't know you have 'feelings' and so only shows function ;)... seriously though, your health is reflected by 'both' feelings and function so when you are feeling well and yet your labs are 'off' in a negative way it is the same as the opposite; you feeling lousy and yet your labs all showing good stuff! doesn't seem quite right and the doctors are all aware of that conundrum and take the whole picture into bearing when making decisions on meds and all the rest of treating you under such a situation. So don't worry about your labs, your doctor will do that. All you need to do is worry about your feelings and let your doc know your symptoms accordingly. That way you will be treated effectively and feel better appropriately Good luck!!

[Lindaloowho]

Just one?  That's tough!

I would like to know the cause.  Of course.

I would like to know why doctors are reluctant to test for autoimmune?

[Krackerrette]

When will they test if it is/can be triggered by Demodex?

[Krackerrette]

Does that mean they tell you only a carrier?