Thursday, 19 November 2009

Cautious Optimism

Perhaps one of my first pieces of advice to anyone newly diagnosed with lupus is to be highly wary of anything you read on the internet, especially regarding ‘miracle cures’. It is a simple fact that, as yet, a cure does not exist (if there was I’d be straight onto it – wouldn’t you?!) and there is no one natural, chemical or dietary ‘answer’ to SLE, whatever bold claims are irresponsibly made in cyberspace. The sad truth is such claims are usually made to get some money out of you – you have to buy a book or some pills or something - and I think they are designed, intentionally or not, to exploit people when they are feeling vulnerable.

It is with this in mind then that I am always very cautious about trusting new medications that are as yet unproven, but there are two developments on the pharmaceutical front that have been drawn to my attention that I feel may warrant at least keeping a cautious but hopeful eye over. This is because both drugs (‘Lupuzor™ and ‘Benlysta™’) have been developed and tested by what are I believe are well known and reputable pharmaceutical companies and both seem to be reporting very positive results in clinical trials

Check out:

http://www.londonstockexchange.com/exchange/prices-and-news/news/market-news/market-news-detail.html?announcementId=10279990

http://www.lupusresearch.org/about/press-room/press-releases/new-study-findings-represent.html

So, whilst there is still a long way to go and it is worth remembering drugs often fall down at the last hurdle revealing fundamental flaws, I think it is reasonable to keep our eyes open to the progress of both these trials. Anyway, at least let's keep our fingers crossed because it is always nice to feel there is a glimmer of hope, especially on those more challenging days. After all, as my personal favourite ‘dude of the moment’, Thich Nhat Hanh the Vietnamese Buddhist and activist, says:


“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.”

5 comments:

Poodle Soup said...

HI Daisy!
I really liked your last post about change being the only constant....such a true statement isnt it!! Its a good attitude to take, each day at a time :)
Great news and hope for new Lupus drugs, lets hope they work out!
Thinking of you and your bubba and wishing all is going well with you both (and hubby too!) Its aways a pleasure to read your posts :)
All going well here with my little boy and Lupus, chemo is finished and lowering the prednisone every month, looking forward to each day!!
Take care
V
xoxo

Leslie said...

Great post and I love the quote at the end. Thanks for the comment on my blog. I'm going to see the rheumetologist on Monday (finally!--that's the bad thing about living in small town, USA... there's ONE specialist and it takes two months to get an appointment). I'm not really sure what to expect for my first appointment. I don't know if there's any further tests he has to run to officially diagnose me. I'm partly hoping this is all a fluke, and he'll so say, "Nope... no lupus!" although that's wishful thinking. I was recently reduced on the prednisone and I can feel some of my symptoms coming back. Ok... long comment! Maybe I should just write a blog post! LOL

Daisy Seale-Barnes said...

Hi V

Am really glad that you are done with the chemo. Hopefully now you are diagnosed you'll never have to go through it again because you can be sure to 'nip it in the bud' and get help before it gets that bad. Also delighted to hear that all is well with your little boy. It must have been really tough for him too seeing you so poorly?

Got another scan today (28 weeks would you believe!?) which is exciting. Really still can't believe it in spite of the enormous bump!

Daisy x

Daisy Seale-Barnes said...

Thanks Leslie.

Good luck with your appointment. It's about time!

Make sure you tell him ALL your symptoms (even if you do feel like a hypochondriac listing them all!) to make sure he gets the full picture. It's easy to get used to certain symptoms and not realise they have anything to do with lupus when in fact they do.

Keep me posted on how you get on.

Best of luck.

Daisy x

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