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Research Round Up

October 30, 2009 Leave a comment

There have been lots of news stories about new treatments for arthritis this week so I thought I’d try and summarise some of the research here.

Apremilast, I haven’t heard of it, but apparently it has been tried on 204 people with psoriatic arthritis and the results were reported at the American College of Rheumatology.

http://www.arc.org.uk/news/article/19419802

You can read the abstract here:

http://acr.confex.com/acr/2009/webprogram/Paper11462.html

If you read the abstract, you will be pleased to note “there were no deaths” !

This also lead me to a link in Nature Drug Discovery, this graph interested me, it is the number of people with mild, moderate and severe psoriasis and the treatments they receive.

http://www.nature.com/nrd/journal/v8/n10/full/nrd2996.html

You can download the pdf here:

http://www.nature.com/nrd/journal/v8/n10/pdf/nrd2996.pdf

Psoriasis market

This is a summary table I’ve drawn up using the information in the article

How does it work? Marketing Name Scientific Name Company that makes the drug Get it by…
Inhibits TNF alpha Humira adalimumab Abbott
Enbrel etanercept Amgen/Wyeth/Takeda
Remicade infliximab Centocor Ortho Biotech/Schering-Plough IV infusion
Simponi golimumab Centecor Ortho Biotech
Target T cells Raptiva (Xanelim) efalizumab Genentech/Roche/Merck-Serono
Amevive alefacept Astellas/Biogen
IL-12/ IL23 Inhibitor Stelera ustekinumab Centecor Ortho Biotech
PDE4 and other interleukins apremilast Celgene Tablet

Withdrawn

There are certainly lots of new drugs out there. But and it’s a big but, they all target general pathways that your cells use to signal (communicate) with each other and long term, no one knows what these drugs are going to do to you.

TNF was discovered because it could kill tumour cells, therefore, it’s possible that if you inhibit TNF you increase your risk of cancer.  So far, after 6 years of follow up, people taking TNF inhibitors are NOT at an increased risk of cancer.

However, cancer takes YEARS to develop and until we have data looking at 20-30 years we’re not going to know if these drugs do increase your cancer risk.  For example, being obese increases your risk of cancer.  About 40 % of cancers could be prevented if people maintained a healthy lifestyle. If you are obese in your 20’s and 30’s you are not going to get cancer (due to obesity). If however you are in your 60’s or 70’s you ARE more likely to develop epithelial cancer because you are obese.  I think the same will be true for the TNF inhibitors.  They won’t give you cancer straight away, but over a lifetime they probably will increase your risk.  Whether the risk of developing cancer is worth being able to live your life in minimal pain and with much greater mobility for 20 years is a decision people who need the TNF inhibitors have to make.

The National Psoriasis Foundation in the US, have a good list of new drugs for psoriasis, whether these will be apporved by NICE/SIGN for use in the UK is a different matter entirely…

http://www.psoriasis.org/NetCommunity/Page.aspx?pid=664

There was also some new research out this week describing how fish oils could help arthritis:

http://www.arc.org.uk//news/pressreleases/18445.asp

http://www.wellcome.ac.uk/News/2009/News/WTX057226.htm

http://www.sciencedaily.com/releases/2009/10/091028142227.htm

The science bit….

http://www.nature.com/nature/journal/v461/n7268/full/nature08541.html

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N=1 Hip and Stuff

October 29, 2009 Leave a comment

Well, my hip is still bothering me off and on, seems to be worst on a saturday for some reason. The doctor thinks it’s more likely to be the tendon than the joint itself as it “only” hurts when I am trying to get my legs into bed or trying to sit down. I can stand up and walk up and down stairs okay, which means the pain probably isn’t coming from the joint.

I have really limited my walking the past couple of weeks (my husband has very kindly been walking the dog at night) and that has really reduced the pain and the swelling, it’s not really a long term fix though.

The trouble with limiting my walking is I haven’t been to Quaker meeting in months. I could probably manage it if I used a walking stick, but I don’t want to. I’m too vain. I don’t really mind if the people at meeting know I have arthritis, but I have no desire for everyone in my town to know. I can hide it from most people, most of the time and if I’m asked why I’m limping I blame it on a nice non specific “bad back”.

At the moment it’s a bit like Russian roulette, I’m just waiting for another joint to go and hoping its not a “major” one. That’s just the way it is.

I’m still hoping for a magic pill to take the fatigue away, its hard not to feel like life is passing you by. Trouble with all the pills (injections and IV’s) is that they all seem to make you more fatigued, not less. Let me just say, THAT SUCKS.

Categories: Psoriatic Arthritis Tags: , , ,

Rheumatoid Arthritis Cartoon

October 18, 2009 Leave a comment

Great link for describing rheumatoid arthritis in 60 seconds

http://www.rheumatoidarthritisguy.com/60-second-guide-to-ra/

I love the cartoons!  They made me smile.  I like the speedometer with the “old/young” and the bit about being able to leap buildings in a single bound one day while not being able to get out of bed on another!

Oh Lord!  Flare Bingo, now that made me laugh out loud 🙂

http://www.rheumatoidarthritisguy.com/2009/06/b-i-n-g-o/

http://www.rheumatoidarthritisguy.com/2009/10/actress-camryn-manheim-ra/

I liked this blog a lot, I like the graphic design, the superhero wall, the RA10 idea. The design is clean and fresh and modern. Just what you need to stop people thinking of arthritis as an “old persons disease”.

Working with RA

October 18, 2009 Leave a comment

From an blogger – Into the Sea of Dreams

Well, the thing of it is. the RA is going to get worse regardless of whether I work or not. That was proven last year when my RA went bat-shit crazy and I started the methotrexate. This was after nine years of relatively good progress and working part time for three of those years. I would average a a major flare two or three times a year. Flares will happen. I have some control over whether or not I have a flare by exercising, eating well, getting enough rest and dealing with stress. But, flares can happen without warning or reason. Shit happens.

http://fumblingthruchaos.blogspot.com/2009/10/excuse-me-while-i-kiss-sky.html

Categories: Psoriatic Arthritis Tags: , , ,

Placebo Effect in Medicine

October 14, 2009 Leave a comment

I want to be able to find this post again, so I’m posting it here.  A long and interesting discussion on accupuncuture, the placebo effect and modern medicine.

http://www.sciencebasedmedicine.org/?p=1518

# # MedsVsTherapyon 17 Sep 2009 at 9:37 am ”Patients want to be listened too.”– Sure. I agree. But let’s be honest, and not fool ourselves and anybody else. In psychotherapy, we would technically, officially call this “supportive therapy,” or informally, amongst colleagues, hire-a-friend.” Empiricism: if it works, and the benefits are not outweighed by harms, and if pt. is informed, then go ahead: let’s listen to patients as an intervention. Studies have been done on this for pts. with “medically unexplained symptoms,” with high utilizers of medical care, etc. In practice, it really doesn’t go well to say: “hey this is all in your head – I am gonna refer you to a counselor.” But you can do this: “hey – along with medical treatment for [fill in the blank with the diagnosis du jour, recognized by its characteristic symptoms of: low energy, fatigue, difficulty concentrating, diffuse aches and pains, dizziness, etc.] – we know that lifestyle has a great impact on how a disease impacts your life – We need a holistic interevntion – I want to refer you to our health psychologist [or whomever] who trains people in how to manage chronic illness — stress management, wellness things like exercise, diet, and sleep, and things like that – I am going to refer you, and follow up to see how this works for you.” Figure out someone somewhere to do this for you. Figure out how to bill for it. Follow an evidence-based chronic illness management program such as Kate Lorig’s, and make sure to let the counselor know that they have liberty to add a healthy dose of “listening” PRN. Along with the empirical evidence, I have done the counseling part myself. One pt had terrible arthritis – you could see the swollen knuckles. Once we started talking, she skipped the pain mgmt agenda I had prepared, and she just went on to talk about: alcoholic boyfriend, lazy irresponsible young adult son, money management problems, etc. Across a couple months, her pain from arthritis disappeared from her agenda — use of pain meds decreased, sleep interference from pain decreased, etc., — pain relief disappeared from her list of “what the patient wants;” she wanted someone to listen, plus she needed to learn basic assertiveness and a few psycho-ed type skills like that. So, if what the pt wants is someone to listen — in a certain salubrious way – let’s do it; and let’s not carry on the charade of ineffective interventions (acupuncture, chakra re-alignment, magnetic therapy, tuning fork therapy, etc.).

OUCH ****

October 11, 2009 Leave a comment

Not a great weekend pain wise.  My left ankle has been bothering me for the past month (swelling up and down), when it’s been bad I’ve been limping.  As a result my left hip has been achy too. Not bad enough to bother the doctor, but certainly making life harder. Until last night, I couldn’t lift my legs into bed, there was a certain point that caused the most intense screaming pain I’ve experienced (worse than labour). 9.5 on my pain scale if you want to be scientific about it.  Once I’d got into bed (20 minutes later) it was alright, as long as I didn’t lie on my left side.  Surprisingly enough I slept alright, unfortunately, in the morning, once I had stood up, I couldn’t sit back down again without the same screaming pain. I will need to make a doctors appointment next week, I really, really hope this isn’t a permanent feature.

Another downside is that I’ve spent most of today sleeping, moving every hour or two to stop myself seizing up, which means my husband has had to entertain the children so now I have bad mother guilt too. Sigh.

Categories: Psoriatic Arthritis

New Quaker Centre

October 10, 2009 Leave a comment

The new quaker centre opened in London this week (3rd october 2009), I’ve not been, but if I get the chance I would love to visit, especially the book shop, I can spend hours in bookshops!

https://bookshop.quaker-secure.org.uk/quakercentre

http://uxbridgequakers.blogspot.com/2009/10/quaker-week-and-quaker-centre.html

It is also Quaker Week, this link tells you a lot more about quakers and you can search for meetings in your area.

http://www.quakerweek.org.uk/intro/

Categories: Quaker Tags: , , ,