More on the Shade Sensor

The Shade ultraviolet light sensor,
which is much tougher than you might
expect a small electronic device to be.

A while ago, I reviewed the Shade ultraviolet light sensor.

I love this device. It helps me track how much ultraviolet light I'm exposed to each day, and lets me know when I should probably call it a day and go inside.

Since my review.  I've learned something more about the Shade. This thing is tough.

If, for example, someone accidentally threw the sensor into the washing machine with a load of clothes, and found it a week later, after several more loads of wash were done,  firmly attached to the inside of the washing machine drum, it surprisingly would still work. (That magnet is really strong, there was no way the device was coming away from the drum without help.)

Please note, I do not recommend, suggest, or in any way encourage, putting the Shade or any other electronic device through the wash.

I'm just saying, stuff happens.  With brain fog and a bit of sore joint clumsiness, more stuff might possibly happen in my house than in a healthy person's house. You might experience something similar, or maybe not. I'm not saying you're exactly the same as me. But if you are like me, you might be reassured to know that the device you're using is tough enough to handle it.




Related post: Review: Shade UV Light Sensor

A Bloody Mess

A lot of lupies, including me, take fish oil as part of our drug cocktail.  I don't take quite as much as my rheumatologist wants, because if I throw up if I take the eight to ten capsules a day he recommends.

But I do take six 1000mg capsules each day.

Fish oil is a blood thinner.

Usually, I don't even think about it.  After all, there are so many side effects of the things I take, I wouldn't be able to think of anything else, if I kept thinking about all the things my drugs could do to me.

This morning, I cut my thumb on a broken glass in the kitchen sink.

I dripped blood as I walked across the kitchen to the drawer with the first-aid kit, and found a sticky dressing to apply. The pad of the dressing soaked up immediately, but didn't leak through the other side, so I was able to do a fair clean up and look a little less like Jack the Ripper.

I have a problem with sticky dressings.  Even though I used the ones for sensitive skin, if they're left on too long, they tend to take chunks of skin with them when they're removed.

So a couple of hours later, when I was in the bathroom washing my hands, I decided I wasn't risking having the, now wet, dressing on any longer, and I took it off.  The tiny cut was still bleeding.

With my non-cut hand cupped under the cut one to catch the blood, I dashed (OK, limped as quickly as I could) back up the hall, tripping on two strategically-placed cats on the way to the first-aid drawer again.

So the moral of the story lovely lupies is this, when a medical-type person with a needle or scalpel or other sharp implement asks you if you're on blood thinners - remember that includes fish oil. (Oh, and take a look at what's in the sink before you put your hands in there.)

Review: Shade UV Light Sensor

The Shade UV light sensor.  It may not be
the most attractive piece of jewellery
you will ever wear, but I'm pretty sure it will
be your favourite - because it can help
prevent lupus flares.

There are lots of different things that can trigger a lupus flare.  For many, probably most, of us ultraviolet light is one of those things.

Sadly, ultraviolet light is one of those things it's almost impossible to avoid all together.

Biophysicist Emmanuel Dumont, PhD has developed a gadget that helps us control the amount of UV light we're exposed to.

(I've told you before my heroes wear lab coats.  Dr Dumont, and his team are definitely heroes for lupus patients.)

The Shade is a sensor which detects and measures the amount of ultraviolet light we're exposed to each day.

You simply download the mobile phone app, pair the device up with your mobile phone, and attach the Shade to your clothes.

It's held on with a magnet, so it won't leave pin damage in your clothes.  And this is a strong magnet, so even when a small grandchild jumped at me for a hug, it stayed firmly in place.

Each day, the phone app asks how you are feeling.  After a while you can look at your history - how much sunlight exposure you've had each day, along with how you felt, to work out your personal limit.  (Everyone's limit is different. Some lupies can handle more UV than others.)

Once your limit is set, the device will alert you when you've received 20% of your daily limit, or 40%, 60%, 80% and 100%.

As lupus changes all the time, you can change your limit if you notice the relationship between daily exposure and how you are feeling changes.

If you tell the device the SPF of your sunblock, it will take that into account in measuring your UV exposure.

The phone app gives you the option to talk to the Shade team when you have questions of problems. But really, the device and phone app are so easy to use, you probably won't need it.

You can find out more about the Shade, and how it was developed (and you can buy one) here https://www.wearshade.com/about.

The Shade won't replace your hat, sunblock and everything else you do to protect yourself from too much sunlight.  But it will give you the freedom to know how much time you can safely spend outside, and a fair warning of when you are approaching your limit.

After a week of using it, I am totally in love with it.  It's not the most attractive piece of jewellery I wear, but it's definitely the most useful. It's a great feeling to know that I can safely enjoy being out in the garden for a while, and know I'm not going to overdo my sun exposure.

If I had a magic wand or multi millions of dollars, I'd provide one for every lupie on the planet. As I don't have the money or the wand, all I can do is encourage you to acquire one for yourself.

Now we just need something to help us control everything else that can trigger a flare....



Disclosure: this is not a paid post, however, I was provided with the device free of charge to enable the review.


Update: More on the Shade Sensor

Methotrexate for Lupus vs Methotrexate for Cancer

I had an unexpected phone call the other day.

Here's the background.  If you go back to this post from 2015, you will know that through the Queensland Government's community care program, I have someone come for an hour and a half each fortnight to help with the major cleaning stuff around the home.

The lovely lady who comes to help out is Karen.  She does the heavy stuff - vacuuming, bathroom cleaning, changing sheets, etc.  She also brings treats for my dog (not in her job description), and is just  a delight to have around. We all look forward to her visit.

My strange phone call was from a nurse who works for the agency that employs Karen.  The nurse had looked over my file and realised I was taking methotrexate.

The nurse was concerned for Karen's safety - whether she should have been taking care with any potential exposure to cytotoxic material.  (Methotrexate is a chemotherapy drug - in hospitals, the drug, and any body fluids of patients treated with it have to be handled with special gloves.)

So I had to explain to a nurse the difference between methotrexate used for cancer treatment in a hospital, and used for lupus treatment at home.

Cancer patients take methotrexate in high doses over short periods of time. Those high doses mean that while they are taking it, their body fluids still carry lots of poison from the drug.

Lupus patients have methotrexate in much lower doses, and we have it only once per week, and take it for years and years.  I take my methotrexate on Sunday night, by Friday when Karen comes to clean, it is well and truly out of my system.  Even on Sunday night, and through Monday, while it is still in my system, the dose is so low, there's really no risk to someone whose only exposure is cleaning my bathroom.

Methotrexate can be dangerous, and I am careful with it.  I'm careful to take exactly the dose prescribed and always on the same night of the week. (People have died from taking methotrexate incorrectly, always take it exactly as your rheumatologist says to.) If I'm having a bad day and my son is sorting out my pills, I still deal with the methotrexate bottle, and don't have him handle the tablets.

The way we take it for lupus, however, is much safer than the way it is used for cancer treatment.

How Do You Know You Have Side Effects from Prednisone?

lupus.cheezburger.com

There's some ways you can tell you have side effects of prednisone.

1. You've become so fat your bra needs to be more highly engineered than the Sydney Harbour Bridge.
2. You're slightly irritable, short of tolerance, and everyone around you has turned into a blithering idiot!
3. Your ankles and feet have swollen to the point where they would look more appropriate being worn by an elephant.
4. The buffalo hump you've developed at the base of the back of your neck makes a convenient pillow for naps when you're out.
5. You alternate between forgetting to eat, and eating enough for the elephant whose feet you're wearing.
6. Your body is getting fatter, but you have to take vitamin D or your bones will get thinner.
7. That agonising headache is your brain screaming for help as it caves in under the pressure of all the fluid your body's retaining.
8. You consider throwing your pills away, but you don't like pain or the likelihood of premature death, so you swallow the wretched things, and determine to keep going.

My Memory's Getting ... What Was I Saying?

lupus.cheezburger.com

I had to go to the GP for a new referral to my gerontologist (not for my age, for my memory.)

I made the appointment, thinking, "I don't really need this, my memory's been getting much better lately."

In fact, I'd been telling myself I had been feeling really good, generally, and that everything was getting better.

I walked the dog every day for a week. I convinced myself that the exercise was good for me, and I was actually feeling better in all ways.

Then I got the phone call from the doctor's office asking why I'd missed my appointment.  I'd forgotten to go.

Suddenly, I realised just how exhausted I actually was.  I looked at my pill sorter, and noticed the number of times during the week I'd forgotten to take my meds.

I went to bed.  I stayed there for most of the week, and and probably not yet quite back to where I was before I decided to exercise every day.

My son's been walking the dog. This has made the dog much happier because he walks further and faster than I do.

The lesson from all this is that yes, I do have limits, and constantly pushing past them isn't going to make them go away, it's just going to make the crash worse when it comes. It seems I had learned that lesson a few times before, but I've kept forgetting it.

The other lesson is that, yes, I do need that appointment for my memory.

It's All In The Jeans

lupus.cheezburger.com

I've gone down a jeans size!

How did this amazing thing happen, when I've been unsuccessfully battling weight for years?

A while ago, I talked my rheumatologist into letting me try a lower dose of prednisone.

He told me that the 5mg dose I was on shouldn't be enough to make me gain weight. However, he was finally persuaded to let me gradually reduce to 3mg per day.

It doesn't seem like a lot, does it?

I knew it would mean extra pain, and I was prepared for that.  I find I'm using more meloxicam (anti-inflammatory tablets) and anti-inflammatory gels and rubs. With that help, I'm managing the pain.

But I stuck to Calorie King, which regular readers know I've been doing for years, and slowly, something is starting to change.

My weight still fluctuates wildly from day to day because of my problem with retaining fluid, so I really can't reliably tell how much I've lost, but my jeans had been getting looser and looser.

About a week ago, I found I could pull them on without undoing them.

Today, I found an older, smaller pair.  They're loose.

So poo to you, prednisone.  For once, I win.

I'm Adapting

lupus.cheezburger.com

Earlier in the month, I posted about an issue I was having with constant vomiting.  My GP added a number of anti-nausea drugs into my cocktail.

Then I started having abdominal pains, and she added a laxative.  It helped.

So now, I've got lots of drugs to keep everything moving in the right direction.

But I still have an issue with nausea.

Yep,  the medication's helped, but the problem hasn't gone away.

It's like morning sickness (and I am definitely not pregnant.)

With my first child, I lost weight in the first few months of pregnancy because of morning sickness, so when I say it feels like morning sickness, I mean it's pretty awful.

For the first few days of this, I lived on Ensure (it's the only meal replacement I could find that appeared from the ingredients list to be free from lactose and gluten.)

After a while, I added some solid food back, in the middle of the day.  A couple of times I tried eating in the evening as well, but found I was really sick while I was trying to sleep.

Today, I tried eating breakfast for the first time since this all started.  It was a big mistake, and I won't do that again.

What's causing the problem?  I have no idea, and my GP doesn't seem to have any idea, except that I have always had gut problems.  This just seems to be my normal reflux and irritable bowel just asserting themselves quite a bit more than usual.

Right now, I'm just trying to be very kind to my gut, being very careful about lactose and gluten, trying not to eat too much when I eat, and being careful to eat plenty of fibre.

One thing that lupies learn to do very well is to adapt to whatever lupus throws at us.

I'm adapting.



Related post: Keeping the Bucket Close

What AUST R and AUST L on your Medicines Mean.

A while ago, I did a post about the Therapeutic Goods Administration, and how it assesses the safety of therapeutic Goods.

Today, I want to talk a little more about the work of the TGA.

Any legally-available medications in Australia, will have somewhere on their packages either AUST R with a number or AUST L with a number.

You can take the number and search the TGA website to get details of the medication, and its makers and suppliers.

So what do these mean?

AUST R means the product is registered with the TGA.  This category includes all prescription medications and a lot of over-the-counter medications, and therapeutic devices.  These are drugs that can be dangerous if used incorrectly, and the manufacturers have had to prove to the TGA that the drugs work for the purpose they're intended for, and that the benefit of using them outweighs the risks involved. Extensive independent studies have to be produced to support the case for having a product registered.

AUST L means the product is listed with the TGA.  Listed products have to be made up of ingredients that have been proven to be basically harmless.  The TGA doesn't require manufacturers to provide evidence of what the drugs do in the particular combination of ingredients.  There is a caveats with AUST L being completely harmless - some things that on their own are safe, can react in bad ways with other things (eg your other medications). It's important to make sure you talk with your doctor or pharmacist about everything you're taking, in case two things really are dangerous together.  AUST L medications are not allowed to claim to be appropriate to treat major health issues (eg lupus, migraine, or anything else you would see a doctor for, unless it's an obvious thing, like a vitamin to treat a vitamin deficiency.)

When your doctor prescribes medication to treat lupus, they will be AUST R medications.

When you get a pain reliever or an antihistamine over the counter from your pharmacist, that will be an AUST R medication.

If your blood tests show you're deficient in a vitamin or mineral, eg B12 or calcium, your doctor might advise you to take those.  They will be AUST L medications.  Vitamins and minerals can be great for treating vitamin and mineral deficiencies.

You will probably find a mix of both AUST R and AUST L medications in your medicine drawer or cupboard.

If you find an AUST L medication that's listed as curing or treating lupus, or cancer, etc, contact the TGA - because that's going way beyond what they're allowed to say and way beyond what they are proven to do.

If you find a "medication" that doesn't have either AUST R or AUST L on it, inform the TGA, and do not under any circumstances use the product. It will be illegal, unproven, and possibly unsafe.



Reference: Therapeutic Goods Administration - Registered and Listed Medicines
Related Post: Assessing the Safety of Therapeutic Goods

But...why?

I've often wondered this.

Why do we need a bottle this size ....

...for this volume of pills?

Stem Cell Treatments

lupus.cheezburger.com

In the news today, a coroner has blamed some dodgy stem cell treatment for a woman's death.

Her treatment, and the treatment being offered for many other conditions currently, was done by a plastic surgeon, removing fat stem cells and re-injecting them.

There can be some confusion caused here.  There is actually legitimate research into stem cell treatments for all kinds of conditions (including lupus) happening now.  This research is at very early stages, and there's no way yet to know if it will prove a viable treatment in the long term.

The research for lupus is looking at stem cell transplants. This would effectively require killing and replacing part of the immune system.

It would not be done by a plastic surgeon.

Once killing the immune system is involved, it becomes a very specialist, and very dangerous medical procedure.


From my years as a hospital chaplain, I can tell you a little about what happens to bone marrow transplant patients (who also need to have a major part of their immune system killed.)  They spend a minimum of a fortnight in an isolation room of a specialist hospital ward, waiting for their immune systems to rebuild following the transplant.  In this time their lives are at serious risk - either from infection (if someone doesn't follow proper handwashing/gown/glove/mask protocol in entering the room, or enters the room if they have a cold or other infection), and from the risk of their bodies rejecting the donor bone marrow (graft verses host) which can be fatal.

That's the kind of thing most likely to happen if stem cell transplants become an actual treatment for lupus.  It would not be something anyone would take lightly, and not something that could be done at a day clinic, or by a surgeon who wasn't a specialist in the field.





References:

ABC Background Briefing: Hallmarks of 'quack medicine' in fatal stem cell treatment, coroner finds http://www.abc.net.au/radionational/programs/backgroundbriefing/hallmarks-of-quack-medicine-in-fatal-stem-cell-treatment/7630288

Lupus Foundation of America: Stem cells and lupus research http://www.lupus.org/research/stem-cells-and-lupus-research

WebMD: Stem cell transplant for lupus topic overview http://www.webmd.com/lupus/tc/stem-cell-transplant-for-lupus-topic-overview

Be Careful with Methotrexate

You might have seen the news today that methotrexate has been linked to eight deaths since 2000.

That's a scary piece of information.

Actually, I remember when I started on methotrexate and read the patient information sheet that came with it.  It's all scary information.

If you read the actual news reports, however, the problem wasn't just that patients were taking methotrexate, but that they were taking it incorrectly.  (For example, taking it every day instead of one day per week.)



So the lesson for the rest of this from these tragic deaths is simple.  The drugs we take for lupus can be very dangerous.  Be careful with medication, and take it exactly as directed by your doctor.

Methotrexate, for example, is usually meant to only be taken once a week, so if you took it daily you would get a much higher dose than you need, and a potentially life-saving medication could end up being a life-threatening poison.

Methotrexate, however is not the only drug that can be dangerous.  Be sure you clearly understand your doctor's instructions on all your medications, even non-prescription ones.  If you have questions or concerns, ask, don't just guess. And don't trust Dr Internet to know.

Be safe lovely lupies.  Too many of us have been dying lately.

Assessing the Safety of Therapeutic Goods

Do you ever wonder who is responsible for making sure medications and other therapeutic goods are safe?

This is a brief video by the Therapeutic Goods Administration on how they assess the therapeutic products they will approve for use in Australia.

Every therapeutic product (including the "natural" ones) is meant to cause changes in the body - which means that they all have risks as well as benefits.



When the TGA approves a product, that does not mean the product is "harmless" or is safe for non-approved uses.  It means that the benefits outweigh the risks for the particular purpose the product's been approved for.

The TGA keeps a register of every product it has approved for use in Australia, you can go to their website and search medications you are taking (both prescription and non-prescription) and find information about the product, including any recalls or other press releases, and often consumer safety information.

The internet's made the world a much smaller place, but beware of where you buy any medicines. If you buy from outside Australia, you may get a product the TGA hasn't approved, or may not be made to the specifications the TGA's approved, and it may even be an illegal import. (So it's possible to buy a medication that can both make you sick and make you party to an illegal activity.)

Oh, and if you do have a problem with a regulated product, make sure you (or your doctor on your behalf) report it to the TGA - that's vital information the TGA needs to keep doing its job properly.

Beware!

The content of this post has been removed, after a check with the Pharmaceutical Goods Administration confirmed that the product is not approved for use.

There are legal implications in anything that could be seen as promoting a non-approved therapeutic product.

Comments have also been removed, and no further comments will be published.

What drugs will we take in the future?

There's always work going on behind the scenes, developing medications, testing, and establishing which get the best results for the amount of money invested.  

Here's some information about recent trials of Acthar Gel, one of the drugs in the pipeline with  Mallinckrodt Pharmaceuticals in America.

New clinical and health economic data from a retrospective analysis of H.P. Acthar^® Gel (repository corticotropin injection; RCI) in patients with systemic lupus erythematosus (SLE) discusses whether the use of Acthar in this patient population was associated with reduced hospitalization costs, lower per patient per month medical costs, a reduced rate of hospitalizations, and a reduction in emergency department visits. The analysis was recently presented in a poster session at the Academy of Managed Care Pharmacy 

The study examined administrative claims data from a commercially insured SLE patient population in the HealthCore Integrated Research Database between Jan. 1, 2006, and Mar. 31, 2015. The analysis provides important data regarding the clinical and real-world use of Acthar as a treatment option for appropriate patients with SLE. The study may offer important insight on possible ways to help provide savings to hospitals and healthcare system through reduced hospitalizations, emergency department visits, and other medical costs associated with treating select patients with SLE.


SLE Retrospective Analysis

“Real-world treatment patterns and demographic, clinical and economic characteristics of systemic lupus erythematosus patients initiating repository corticotropin injection therapy” (Wu B, Deshpande G, Tunceli O, Gu T, Popelar B, Philbin M, Damal K, Schepman P, Wan GJ. ABSTRACT M17, page 109.) described the clinical and health economic profile of SLE patients initiating Acthar in a commercially insured U.S. population using claims data from the HealthCore Integrated Research Database4 between Jan. 1, 2006 and Mar. 31, 2015. Among 29,401 SLE patients identified, 29 (0.1%) initiated Acthar, on average, at 23 months after diagnosis and were followed for an average of 24 months. The average age at diagnosis was 45.1 years and 89.7% of the patients were female. The analysis identified medical costs specific to SLE-related symptoms as well as from all causes.

Findings associated with the use of Acthar in this population of SLE patients included:

• A medical cost offset was observed due to reduced hospitalisation costs, despite an increase in all-cause or SLE-related pharmacy costs after initiation of Acthar, which offset the drug costs by 32%-37%.
• After Acthar initiation, patients incurred significantly lower per patient per month (PPPM) medical costs specific to SLE ($3,011 vs. $893, p=0.02) compared with pre-initiation period, mainly driven by lower PPPM costs for SLE-related hospitalisation ($2,444 vs. $434, p=0.02).
• Further, where those same SLE patients incurred medical costs related to all causes including SLE, there was a 20.2% reduction in the rate of hospitalisations (238 vs. 190 patients per 1,000 patient year, p=0.40), and a 12.6% reduction in the rate of all-causes emergency department visits (238 vs. 208 patients per 1,000 patient year, p=0.59) during the Acthar post-initiation period as compared to the pre-initiation period. These results were not statistically significant, perhaps due to small sample size.

Limitations of the Study
This study estimated costs from a commercial payer’s perspective, which may underestimate the overall cost burden of the disease, and may have limited generalisability to a non-commercially insured population. Additionally, this study found trends of decreased healthcare resource utilization after Acthar initiation, but most, with the exception of hospitalisations, were not statistically significant due to small sample size.

About SLE
SLE is an autoimmune disease in which the immune system produces antibodies to cells within the body leading to widespread inflammation and tissue damage. It is the most common form of lupus, a condition that impacts at least 1.5 million Americans. Ninety percent of those diagnosed with lupus are women, often between the ages of 15-44.6 Lupus is characterised by periods of illness “flares” and remissions and the disease can affect the joints, skin, brain, lungs, kidneys, and blood vessels. Symptoms may include fatigue, pain or swelling in joints, skin rashes, and fevers.

For further information, see the drug company's site http://www.mallinckrodt.com/about/news-and-media/2161169

Hey "Big Pharma"

There's been a movement over relatively recent years, to reject mainstream medicine, and substitute with "alternative medicine."

The alternative's become so popular that much of it is covered by health insurance nowadays.  In fact, the last time the cost of my health insurance went up, I looked at what my cover included, and went in to the storefront.  I asked if there was perhaps a cheaper option that didn't cover all of the "alternative" treatments.  Their answer, such a cover doesn't exist.

I am not going to use:  naturopathy, acupuncture,  reflexology, kinesiology, Chinese & Western herbalism, shiatsu, aromatherapy, homeopathy, Bowen therapy, Alexander technique and Feldenkrais, but I'm covered for all of them. All of those are included in a basic extras cover - the one I need if I want cover for the dentist, optometrist, and physiotherapist.

As all of the "alternative" treatments have become more popular, it has also become quite fashionable to complain about and suspect the motives of "Big Pharma".  (This despite the fact that prescription medication is subject to far more stringent government controls than the "alternative medicines", which can often also be multi-million dollar businesses.)

I understand - "Big Pharma" is a set of  corporations just like "Big Electronics" or "Big Cars" or "Big Airlines" or  "Big Supermarkets" or even "Big Herbal Medicine." Big corporations exist to make money, and don't have any real feeling for ordinary people. But do you know what? All businesses, big or small, exist to make money.

So let me be the person to come out in favour of "Big Pharma" along with the rest of evidence-based medicine.  Thanks to pharmaceutical companies, my doctors, medical researchers and my local pharmacist, I am alive and my symptoms are mostly quite well controlled.

Thank you: thank you pharmaceutical companies, thank you doctors, thank you pharmacists, and thank you medical researchers. May God bless you all, and may you all continue to help keep lupus under control.

As for "Big Health Insurance"?  I'm starting to wonder if maybe I'd be better served by parting ways with them, and just trusting the government won't destroy Medicare and the Pharmaceutical Benefits Scheme.

Do you own a blog, or other resource on the web to support people with lupus?  Want your site shared on Sometimes, it is Lupus on World Lupus Day?  Add your details here: http://www.sometimesitislupus.com/2016/04/lupies-on-net-where-are-you.html

Medical Marijuana

lupus.cheezburger.com

"Medical marijuana" has been the topic for a lot of news reports lately.

The Federal Government has given the green light for it to be produced and the eastern states, at least, have made moves towards doing human trials on the use of marijuana in specific conditions, and the Queensland Government has a bill proposing making it legal on prescription.

I've already seen Facebook posts asking "would you try medical marijuana for lupus?"

Let's start with a basic fact: just because something is natural or even legal doesn't mean it is safe.

For example, natural supplements, that were available over-the-counter or over-the-internet have caused liver failure and even death in some people.  The problem?  Some things that are safe in small amounts are toxic in large amounts. (The water in your tap contains chlorine and is safe - but if you drank straight chlorine, that would be very, very bad.) Another problem, for people with health issues, is that some things have negative interactions with our medication. (Have you noticed that Methotrexate sometimes comes with warnings against eating grapefruit?  Methotrexate can make the usually-harmless vitamin C into something dangerous if you have too much.)

At the moment, I don't think there's been enough scientific research for me to be confident to take it.  (I can't tell you what to do with your own body, so if you disagree with me that's fine.)  I'd like to know more about side effects and drug interactions before I was comfortable to agree to it being added to my drug cocktail.

I do like that, like other narcotics, it will be a prescription-only drug.  That means that not only a patient, but also a doctor who should be keeping up to date on the research would be looking at questions like: is this drug better for this purpose than the other options?  Is this drug safe for this purpose (taking into account the patient's condition, other medications, etc.)

I know there's a lot of anecdotes on the internet about cannabis curing all kinds of diseases.  I feel safer with medicine based on scientific evidence, rather than anecdote, but maybe that's just me.

All in all, increasing treatment options is a good thing.  But a new option is just another new option, and the risks and benefits for each patient need to be weighed up the same as with every other treatment option.


References:

‘Big change’ coming to marijuana laws as Queensland leads the way http://www.news.com.au/lifestyle/health/health-problems/big-change-coming-to-marijuana-laws-as-queensland-leads-the-way/news-story/01c53271fa9a14cd5bec40cc04263f7e

Does cannabis cause mental illness? https://theconversation.com/does-cannabis-cause-mental-illness-54890

Herbal supplements linked to at least six Australian organ transplants since 2011, data shows http://www.abc.net.au/news/2016-03-01/supplements-linked-to-at-least-6-australian-organ-transplants/7207472

Medical Marijuana Trial in Australia: What you need to know http://www.bodyandsoul.com.au/health/health+news/medical+marijuana+trial+in+australia+what+you+need+to+know,40227

NSW medical cannabis trial to treat chemotherapy patients suffering nausea http://www.abc.net.au/news/2016-02-26/medicinal-cannabis-trial-launch-for-chemo-patients/7202058

Synthetic cannabis medical trial to treat Victorian children with severe epilepsy http://www.abc.net.au/news/2016-02-03/severe-epilepsy-children-marijuana-trial/7136768

World first as NSW trials medical cannabis on children with severe epilepsy http://www.smh.com.au/nsw/world-first-as-nsw-trials-medical-cannabis-on-children-with-severe-epilepsy-20151027-gkjntb.html

Bloody Tests!

I had my blood tests today.  It's a normal thing I do quite regularly.

I do it so often, I know which is my best vein.

Hardly anyone has ever found a vein in my left arm, so I always present my right.  (Even though it's my dominant arm, and the one I use to hold the walking stick, so it's guaranteed to bruise.)

It took the phlebotomist a while to find the vein - the good vein.

I looked where she was working, and realised, I can actually see some little pinprick scars from previous needles.

According to the phlebotomist, my "good" vein isn't really very good at all any more.

I still have nightmares about all the years I used to give blood, before anyone worked out that there were better veins in my dominant arm.  It was awful, taking three or four goes and a couple of changes of blood taker before the blood flow actually started, and then often it would stop flowing before the bag was full.

So here we go lupies, give me advice.

How do I get my veins to be more accessible?

Do I drink a couple of litres of water before the test?

Do I put hot or cold packs on my arm before the test?

Do I stand on my head for half an hour? (Actually, forget that, I physically can't do it.)

How do you get big, strong, full veins for tests?

(Or am I the only one who ever has this problem?)

Now That's Scary

www.lupus.cheezburger.com

This coming Saturday is Halloween.  That's not something we traditionally celebrate here, but I know all about it from American movies.

Halloween is a time for little kids to put on fancy dress and eat lots of lollies, and for teenagers to be murdered in extremely gruesome ways by masked serial killers.  And there's something about pumpkins being used as decorations instead of as vegetables. (Clearly American parents don't freak out about wasting food, or teenagers. Perhaps there's an over-supply of both.)

I have to admit, I don't think the whole Halloween thing is all that scary.  (Maybe if we did the teenager-murdering thing here, I would have been scared when my kids were in their teens.)

Here are some things that really are scary (at least for people with lupus):

1. Waking up each day and finding you still have lupus.
2. Reading the information sheets that go with your medications.
3. A new symptom you've never had before, and haven't even heard of.
4. Knowing that someone really is trying to murder you - and it's your own body.
5. Getting the bill for your month's drugs at the pharmacy.
6. Finding you're not well enough to work, and you have to live on a Disability Pension.
7. Comparing what you could do a couple of years ago to what you can do now, and wondering about what you will be able to do in a couple of years' time.
8. When brain fog hits, and you don't know where you are, what you are doing, or even what day it is.
9. When your pain levels are so high, the strongest medication you have doesn't make a difference.
10. Hallucinations.
11. Realising you are out of pain meds.
12. Catching a cold and just knowing it will lead to infections - because everything does.

It Makes No Sense

Sometimes, things that happen make no logical sense.

I read yesterday about an issue medical researchers are having with placebos.  Apparently, the placebo effect is becoming stronger, making it harder to test new drugs properly.

A placebo is an important part of testing any new medication.  People in medical trials are either given the actual drug or a placebo (fake - that shouldn't do anything).  If more people get better using the actual drug than using the placebo, it indicates the drug's doing something worthwhile.

There's always been an issue with the placebo working for some patients, even though it really shouldn't.  Now, at least over in America, the placebo is working for more and more patients, affecting the results of medical trials.

It has me wondering about other things I know work for some people, but probably shouldn't.

For example, there's no reason the Paleo Diet should make people healthier.  It's been criticised by nutritionists and scientists.  But I know someone who has lots heaps of weight using it, and her lupus is far better controlled than it was before she started using the diet.  She feels good. (And this particular lovely lupie had been extremely sick.)  For her, it clearly worked, whether there was any reason it should have or not. That doesn't necessarily mean it will work for everyone else, or even anyone else.  But it works for her, and for her that's fantastic.

Again, I frequently hear from someone who tells me how great low dose naltrexone is.  For that person it apparently worked.  It's not an approved treatment, and there doesn't seem to be any actual clinical studies to back it up.  But there's anecdotal evidence that for some people, it apparently works.

The one I most struggle to believe is the woman I heard of who "cured" lupus by giving up coffee.  I would never, ever try that.  It's a sacrifice I just am not willing to make.

So where does that leave us?

We all constantly hear about alternative treatments, diets, "cures", whatever else.  A lot of it is snake oil.  And much of it none of us would ever want to try.  But if you hear of one that does make sense to you, talk about it with your doctor.  (Remember, sometimes alternative treatments can have bad interactions with the medications you're already taking.)

If it's not got any way of making things worse,  maybe some of it is worth a try.  Who knows? You might be one of those people that something works for, even if there's no known reason why it should.

We're all different.  The medications that work for some lupies don't seem to work for others.

Maybe if the placebo effect keeps getting stronger, none of us will need actual drugs one day.  I suspect that day is a very, very, long way off.

Until then, I'll just stick to what my doctors have told me to do and to take, and not ask about trying anything else.  This is more than enough for me to handle.



Reference: Science Alert, The 'placebo effect' is getting stronger with time. http://www.sciencealert.com/the-placebo-effect-is-somehow-getting-even-better-at-fooling-patients-study-finds

Science-based Medicine: Low Dose Naltrexone: Bogus or Cutting Edge Science? https://www.sciencebasedmedicine.org/low-dose-naltrexone-bogus-or-cutting-edge-science/

ABC Science, Paleolithic diet doesn't weigh up. http://www.abc.net.au/science/articles/2013/09/10/3842158.htm