Monday, 16 December 2013

Butterfly




I'm blessed to be surrounded by friends and family who are all incredibly supportive and understanding. From talking with other lupies, I know just how incredibly rare and special it is to have such wonderful people around me.

Little Miss, who lives upstairs from me, made me this lovely orange and purple lupus butterfly for my Christmas tree. (Orange is the lupus awareness colour here in Australia, but in some other countries, they use purple.)

Sunday, 15 December 2013

Lupus: The Cause and Cure

One of the frustrations of lupus is that no-one knows what causes it, and as yet, there's no cure.

I hope and pray there is a cure out there, as do many other lupies. Researchers in universities and other institutions are working on it, and are learning more all the time.  We've even in the last couple of years had the first drug developed specifically to treat lupus.

When the cure is found, we'll know about it.

We'll read about it in the news. Lupus organisations world-wide will be celebrating. Our doctors, particularly our specialists, will read about it in serious peer-reviewed journals. Then, when the cure is available and approved they will be more than happy to use it, provided the benefits are worth the risks.

We won't find the cure in books by non-medical people who claim to have "cured" their own lupus or some such thing.

We won't find it from people who will claim to be up-to-date on the research, and to prove it cite the abstract (not the actual article) of a research article dealing with very, very, preliminary research.

We won't find it from someone who tells us to change our diets, do more exercise, stand on our heads in the corner for half an hour a day, etc, without any evidence that their theories do anything at all.

Hope is important.  I sincerely hope that a cure for lupus is found, and I hope and hope and hope some more that it is found soon.

But I'm not grasping at straws.

Every now and then I hear from people who want me to promote their books about the cure for lupus, or their supplement or whatever other thing they're trying to sell.

I don't generally respond to them.  It saves me from the wasted effort of arguing against someone who's not at all interested in hearing what I have to say anyway. (I save energy where I can.)

I don't generally tell you about them.  I'm not big on promoting false hopes. I'm especially not big on promoting a false hope that might encourage people to give up the life-saving medications their doctors have them taking.

 We're coming up to Christmas - which is about hope and hope fulfilled.  This Christmas, please, let me encourage you to keep hoping. Somewhere out there, there is a cure.  And one day some very clever people will find that cure.  And don't worry - when a cure really is found, you won't miss hearing about it.                



Friday, 6 December 2013

Side Effects Can Be Serious

I want to share with you the story lovely lupie Jamie posted on the Sometimes, it is Lupus Facebook page:

This is just MY story and My story only.... it is just a message from one Lupie to another. I have had lupus since 2003 and tried many drugs to treat it. I was running out of options and when Benlysta was approved I cried tears of Joy! I got on board and I was ready for a new life! In Sept 2012 I had my first infusion, by my 3rd infusion I had gained a lot of weight (like 5 lbs a week and was hardly eating anything). I was active. I didn't feel much different but I had no flares  I started having cramps in my left foot and I thought I had plantar fasciitis then it started up my leg. Well by Halloween I couldn't walk the neighborhood with my family on Halloween, then I ran a small temp and had a flare and decided to go to UNC ER. They told me I had 10+ blood clots in my left leg and a Pulmonary Embolism and that I was lucky to be alive. I was 43 and had a 6 year old daughter and was in the hospital for 6 days and couldn't see my child because I couldn't walk and was in intense pain. There are some Rheumys that are very against Benlysta and some that are very pro Benlysta. sitting in the infusion room I was so happy to hear all the success stories of how it changed their lives!!!! So YES it does work for many!!!!!! Just be very careful and pay attention to the side effects.. if you feel short of breath or have a cramp in your leg or foot.. don't waste precious time, go to the ER and tell them you have lupus and to check for blood clots. I got lucky.... Just wanted to share this not to bash the drug but to share my story to make sure that all of you stay safe!

Note that Jamie wasn't saying that Benlysta isn't a great drug for many people. But like all drugs it has potential side effects.  For her these side effects were life threatening.

There is an important lesson in this for all lupies (and anyone else with any other health conditions). If we have any new symptoms, we should take them seriously. They could be a sign of our basic disease doing something new and bad, or they could be a sign of side effects that could be disastrous.

If you have lupus, you have a double risk - the disease is life-threatening, but the treatment can be, too.

If things don't seem right, they probably aren't. Ask your doctor.

(And remember, this applies to any medication, not just prescription medications, but over-the-counter medicines and alternative medicines, too.)

More information:

Medicines and side-effects - Better Health Channel http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Medicines_can_cause_unwanted_side_effects

NPS Medicine Wise - Patient information on individual medications http://www.nps.org.au/medicines