The Anticipation… It’s Killing Us!

Posted: October 3, 2011 in Specifically Lupus
Tags: , , , , , , , , , , , , ,

Excuse the pun in the title…

Having read a rather disconcerting article recently I decided to do a little digging through the books to look into the so called advances in Lupus treatment. I guess the best place to start would be at the beginning (a very good place to start).

Have you got any leeches…

Cast yourself back through the folds of history (if you reached the dinosaurs you’ve gone too far…) to somewhere around the high middle ages (12th Century). We’re talking about post-crusades; Italy was becoming, well, Italy; Paris would have had almost 200,000 residents (wow!); some dingbat decided to make everyone’s lives that little harder and invent the deicmal point; and another decided to think up algebra; America didn’t exist (it’s true! it was off the edge of the flat world before it became round!); Rome had already fallen and the Pope now wanted to assert himself and Catholicism across the globe…. …meanwhile, in picturesque south-western Italian commune called Salerno, a surgeon called Rogerius had made observations about a particular type of rash that appeared across the nose and cheeks and had decided to call it Lupus. (Unfortunately he neglected to notate how to cure it…) These days it is referred to as a malar rash.

The Hungry Man…

A Hungarian Dermatologist Kaposi Mór (aka – Móric Kaposi, Moritz Kaposi) in 1872 recognised the clinical manifestations of the systemic form of the disease, presumably in light of multiple persons with the malar rash all presenting with other systemic involvement that could not be dismissed as coincidence. Unfortunately for Lupus patients, he also didn’t make mention of a cure, instead focusing his efforts on idiopathic multiple pigmented sarcoma, a form of skin cancer later called Kaposi’s Sarcoma (but in all fairness, if he hadn’t been recognised for this he probably wouldn’t have been noted for his observations of Lupus…)
And on a side note I’d also like to note that he is also credited for his observations and clinical description of Xeroderma Pigmentosum, a rare group of folks close to my heart.

It was in 1894 when Quinine, an early anti-malaria drug, was noted to be an effective therapy and then a little later in 1898 it was noted that by adding Salicylates (similar to Aspirin) was of greater benefit still. (You don’t want me to go into the details of what you will find Salicylic Acid in or what it can do to you… you would never get washed again!)

Now It’s War…

In 1948 a group of people decided to scrape the insides of “Lupie” bones out and found that when you look at the jelly under the microscope there is a particular type of cell in there the Lupus Erythmatosus cell (LE cell). Don’t let it confuse you though, the LE cell appears in more than just lupus patients (but I guess it’s a real sciency type start!) It was also around this time that steroids (yes, those things make us fat and cranky) were introduced into the Lupus “diet”. You can blame a bloke called Philip Showalter Hench for that one.

What Now…

Just to recap –

1894 Quinine – An anti-malaria drug

1898 Aspirin (or equivalent) – A 5th century pain killer

1952ish Steroids – Originally designed for use in Rheumatoid Arthritis.

So in the 900 years that Lupus has been documented for there has been no (zero, zip, zilch, nada…) drugs developed specifically for the treatment of lupus. Lupus has had the old hand-me-downs of it’s brothers and cousins, you can see it in it’s dad’s old suit at church on Sunday (but the real surprise is Saturday night, when it borrows it’s sister’s dresses and heels!)

But wait! What’s that on yonder rock reclining? Is it a…

Benlysta (belimumab) the first drug specifically for lupus…. EVER! 900 years we’ve been waiting and to be honest, I’m a little dissapointed at what I hear.

The people to whom I’ve spoken with who are in the process of treatment with Benlysta have given some very mixed responses. Some think they are worse, some just the same and some are “marginally” better.

And after getting all excited when the approvals rolled in, insurance companies won’t cover it, medical institutes don’t support it… the UK’s National Institute for Clinical Excellence (NICE) have stated (and I quote)…

The Committee concluded that belimumab could not be considered a cost-effective use of NHS resources

This is the point where that deflated “oh…” comes in.

So What Next…

I have had my eye on something else though. Lupuzor. A drug that has not been rushed out of the stable into the paddock to try and grab the market share but one that is gently maturing like a fine wine…

I just hope we’re not waiting 100 years for it to be a triple distilled nightmare of swill.

  1. Iris Carden says:

    It’s amazing. In my cocktail – there’s still the antimalarial (plaquenil); the aspirin-type drug (meloxicam); a chemotherapy drug designed for cancer (methotrexate); and the ubiquitous steroids. There’s tons of other muck as well – but nothing designed for the lupus I actually have!

    When I see all the fundraising drives for research for Breast Cancer, leukaemia and all the other “popular” diseases – I get very annoyed that even though lupus is a far more common illness, we seem to get the least awareness, the least research effort, and the least chance at a decent treatment.

  2. Avril says:

    And my cocktail is : Plaquenil, Steroids and Cellcept (Mycophenolate) which is an anti rejection drug for transplant patients. I am miles better than when diagnosed 3.5 years ago but can’t seem to get out of the woods completely. At least I have about 70-80% of my life back

  3. Lupus Veteran says:

    I have often thought that lupus isn’t a ‘glamorous’ disease. It doesn’t grab attention like HIV or cancer. How can we ‘glam up’ lupus? Would we even want to? My cocktail has changed over the years and now it’s back to good old reliable steroids (at an unknown long term cost). We all had such high hopes of Belimumab, but now I too have my eye on Lupuzor….maybe it’s slow and steady progress up the back straight will take it to the winning post.

  4. lupusadventurer says:

    After twenty plus years of plaquenil, over 10 years of added methotrexate, imuran and prednisone I could no longer take the methotrexate or imuran, and they were replaced with Rituxan infusions in a clinical trial, because the lupus attacked my liver. 5 years of amazing health followed, then 1 year, of increased flare, no more clinical trial, refusal for Rituxan funding by insurance, and until Benlysta there was only plaquenil and prednisone available for my situation. I have finished 3 infusions so far since starting about 5 weeks ago, and I am beginning to see a glimmer of improvement some mornings. It will take about that long again to see if there will be some real help. The jury is still out on the overall effectiveness of this sole lupus-only drug. I haven’t heard about Lupuzor, but will be watching for more info on it.

  5. […] my previous post, The Anticipation… It’s Killing Us!, I spoke about Benlysta, the only drug specifically designed for Lupus patients in it’s 900 […]

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