ahhh...!

Well I shouldn't have worried about having an injection of methotrexate the day before my uni course starts - my liver has intervened - it is protesting that it has had enough methotrexate for the time being. I went to get my first injection today, only to be told that that I should stop taking methotrexate completely - no tablets, no injection.
Good news in the very short-term - I should be reasonably well on Wednesday, but potentially very bad news longer-term 'cos despite its ill effects it was helping to supress the rheumatoid arthritis. I'm not sure how quickly the pain and stiffness will wear on but it could be quite soon.
Back to hospital next Tuesday to find out how I'm doing... keep your fingers crossed for my liver (now there is a strange request).

Txxx

PS I'll try and post about something else next time

needling myself...

Well.... all those sleep depriving symptoms that I mentioned in my last post, and one or two more problems too personal to mention, turn out to be clear signs that my body is reacting badly to methotrexate. Much more worryingly, blood tests show my liver is struggling. My rheumatologist (a knowledgeable and decent man who I saw earlier this week) says we need to get things sorted quickly because my joints are continuing to deteriorate.
Now, your liver is not an organ to cross - as essential to life as the heart and the brain, the liver is the biochemical powerhouse of the body. However it is pretty sensitive to "alien" chemicals like methotrexate.
I currently take methotrexate (mtx) tablets once a week - it knocks out the immune system for a day, which then takes the rest of the week to recover. Many of the unwanted effects of mtx occur because it passes through the gut. So a possible solution to those unwanted effects is to have methotrexate injected. From next Tuesday therefore, I will trundle up to the Haywood each week to have an injection. Not too much of a problem with that, I'm not phobic about needles, although I still have to look away when they take a blood sample. However, after a couple of visits they will train me to inject myself, and I can't say I'm looking forward to that.
What I'm most concerned about is that, in an attempt to try and stop my misguided immune system attacking my joints, they are going to increase the dose of mtx - so although some of the symptoms should diminish, others may increase.
It's a high risk approach - they will monitor my liver function very closely to make sure it doesn't suffer permanent damage. The potential benefits are that my joints will suffer less damage.
At this point in the consultation, I asked the rheumatologist if we couldn't just leave things as they are - on a tolerable, slightly reduced dose of mtx - he responded, rather darkly "You wouldn't thank me in a few years time if we did".

Oh bugger, and there was me thinking I was doing alright.

On a very positive note - my MA in Community Arts starts next Wednesday - I'm really looking forward to studying again - the discussion, the reading, the learning - unfortunately I will have had the first injection of the increased dose of methotrexate the day before - I hope I feel well enough to attend...

bad day...

I'm lying in bed with thick pyjamas and Pen's fluffy pink bed-socks on 'cos it's so bloody cold - I don't want to put the central heating on to heat one room/one person - me being at home all the time is really caning the gas bill. It's a very bad day today - the worst in months - I have finally phoned the hospital to see if I can have another steroid injection, and I'm waiting for them to phone back - it's a really hard choice to make knowing the seriousness of steroid side-effects.
Good job I've got David Attenborough and Planet Earth in bed with me (it's a king-size bed), otherwise I'd be right bored...

The 39 Steps

1. wake - any time from 4:30am to 8:30am
2. fidget - three aims: 1) get shoulders, knees, ankles, elbows and wrists comfortable; 2) don't wake Pen (who needs more sleep than me); 3) try to stop worries crowding into my head - optional activity: incubate idea for blog post
3. cuddle Pen
4. get out of bed - having given up on above three aims
5. pee
6. put on jim-jams
7. get socks - grope in dark drawer for a pair of large, soft socks (not tight, crisp ones - I can't get those on with sausage fingers)
8. wrestle with djellabah - an almost impossible garment to get on at the best of times, but particularly challenging first thing in the morning with stiff, painful joints, however, well worth the effort because it is warm and comfy - the occasion of the first of many bouts of (silent) cursing
9. open and close bedroom door very quietly - which is next to impossible as the latch has needed oiling for the last four years
10. brush toothy-pegs in other bath-room cos that's where the electric toothbrush is (I can't manage a manual one first thing), and also, so as not to wake the Sleeping Beauty aka Pen
11. go down stairs - a slow, "one-step at a time" process
12. shuffle to kitchen
13. switch on kettle - hoping it has some water in - if no water - fart about with water filter thingy and the stupid eco-kettle's knobs and doo-dads
14. turn on lovely digital radio
15. turn down radio cos it is inevitably too loud, threatening to wake Pen and Rich (aka The Sleeping Beauties)
16. feed cats - a cause of much cursing if there is no catfood open, or one of our two cats is missing
17. get today's pill box
18. prepare breakfast - toast or weetabix + a cup of tea - got to have this even if I don't fancy it, 'cos pills must be taken with food (otherwise dire consequences)
19. turn off radio
20. lurch into lounge - with tea, toast/weetabix, pills and socks (note- mode of locomotion has shifted from shuffle to lurch, my joints are loosening)
21. arrange cockpit
22. sit down and wrestle with socks
23. turn on laptop
24. turn on TV - tune to Radio 4
25. return to kitchen to get things I have forgotten
26. stagger back to turn down tele cos it is inevitably too loud, threatening to wake Pen and Rich (aka The Sleeping Beauties) - note- mode of locomotion has shifted from lurch to stagger, cos I'm hurrying
27. slurp tea/eat fodder
28. check email while doing above, trying (unsuccessfully) not to get crumbs in keyboard
29. take pills
30. browse Guardian and Wikipedia front pages - opening articles that interest me as background pages
31. read some of above articles - cursing as necessary at Bush, Blair, Cameron, "state of world in general"
32. get cold (especially if it's after 8:30 when heating goes off)
33. either -
    - put blanket over knees
    - go to utility room to turn central heating back on - optional activities: step in cat sick, curse, clear up cat sick whilst cursing (who said men can't multi-task)
34. settle on sofa again
35. get annoyed with radio especially if it is "Midweek" with bloody smug Libby Purves
36. turn sound down
37. open "bloghawk" - snigger at enormously witty posts
38. sign in to blogger - optional activity: curse at inability to type password accurately with sausage fingers
39. settle to write new blog post

Those are the 39 necessary steps preliminary to writing this post - I just hope you are grateful for all the effort

there's drugs and "drugs" and non-drugs....

drugs
are all the things that you and I take to help cure or alleviate a medically recognised condition - most are harmful if used wrongly, and most are sufficiently dangerous to have to be prescribed by a doctor. Despite the potentially ruinous effects, these drugs are generally regarded as good.
"drugs"
Then there are "drugs" - these are things that are judged as bad, perhaps because they are often used in the pursuit of fun. "drugs" also have very dangerous effects - often exaggerated by the media, they are in many cases no more dangerous than some things you can buy over the counter in any chemist's. Many of the most dangerous effects of "drugs" depend on the context in which they are taken.
Cannabis is a "drug" - and there is some evidence that long-term, heavy use can trigger schizophrenia in pre-disposed people. However it's benefits in treating conditions like multiple schlerosis, Parkinson's disease and arthritis are at least as well proven as it's ill effects. Which makes the decision of Carlisle Crown Court to prosecute and convict Lezley and Mark Gibson for supplying small quantites of cannabis to MS sufferers, utterly bizzare. Lezley herself suffers from MS and gets relief by taking cannabis, so she and her partner Mark, being kind and helpful folks supplied small amounts of cannabis to other accredited MS sufferers. They didn't charge for this service, but accepted donations to cover costs. Following their conviction they will have to stop doing this. Cannabis, in the form of Sativex spray, is available to people with MS, on prescription - but due to a cowardly government fudge, it isn't properly licenced, so the legal basis for doctor's supplying it is uncertain.
I would stake my life on cannabis being no more dangerous than at least four of the drugs I am currently taking - but because it is a "drug" it cannot be a drug - my GP cannot, for example, prescribe cannabis to relieve my arthritis.

non drugs
...I won't even mention alcohol and nicotine, which are still most peoples non-drugs of choice.

Our society has some pretty strange, inconsistent and hypocritical attitudes towards drugs/"drugs"/non-drugs ... and it's to the detriment of just about everybody except landlords, drink and fag manufacturers and dealers.

becalmed....

...is what you are when you get the wind taken out of your sails - and I have had the wind taken out of my sails today.
I visit the Haywood hospital rheumatology department regularly so that I can see Sarah (the truly excellent monitoring nurse consultant), who checks how I am getting on with taking methotrexate (mtx) - she reviews my most recent blood test and we have a chat about how I am.
I said I'd been feeling pretty good, and that the mtx must be having a significant effect. She clearly didn't want to dent my positivity, but she sounded several words of caution -

• The improvement in my joints could in part be due to mtx, but the steroid injection I had 6 weeks ago would still be controlling the inflammation (I'd understood that it would have worn off by now, but apparently it remains active for up to ten weeks). It's simply too early to tell if the mtx is being really effective.
• Just because I had virtually no ill-effects from taking mtx last week didn't mean it would always be like that - this week it might be bad again (oh joy!)
• I can't have another steroid injection now, until I've seen the rheumatologist at the end of January. I thought I could, but it turns out that if I do, they won't be able to tell if the mtx is working - it makes sense now they tell me - but even still it comes as a bit of a blow 'cos they've been a bit of a lifeline. If things become unbearable they will bring forward my appointment with the rheumatologist.
• The 15mg/week of mtx will not be increased until I see the rheumatologist - I thought I would be going up to 20mg and then 25mg straightaway, but apparently this is not inevitable. This is in some ways good news, 'cos it is less likely I will feel lousy over Christmas/New Year.
• I must be careful not to overdo things just because I have some good days

I had clearly misunderstood a lot of things about my treatment - or perhaps had placed too positive a gloss on what I had been told? Whatever, I had built up rather too rosy a view of my condition....

I work for an advice agency that very often gives people lots of very complex information about their circumstances and what they need to do. We recognised some years back that often this was too much for even the most able and calm people to take in without misunderstanding, so we nearly always provide written confirmation of our advice, and sometimes also send a follow-up letter.
It seems to me that health professionals and the people they are treating, are in the same position, and that some sort of written confirmation of what has been said would save lots of misunderstanding and potentially, mistakes in treatment.

So today you find me feeling a little deflated, perhaps becalmed, but probably rather more realistic about my current condition.

Wednesday update - as if to confirm what Sarah told me yesterday, my joints today are as bad as they've been in a month, and if I'm truthful with myself they've been getting worse for a few days.... ho-hum

a "no show"

.... after a load of werriting and maundering last week , I experienced virtually no ill effects after taking methotrexate. For the last few weeks Thursdays in particular have been really horrible, and I assumed that something similar would happen again - but it didn't, so I think we'll call that a "no show".... whoopee!

Back in the days when Thursday was Friday,
I only worked four days a week. So, on Thursday, whilst others were toiling away, barely halfway through their working week, I had that "Friday" glow. I'd sometimes celebrate with my own personal dress-down Thursday. Everyone else clad in sober dark suiting, I would sparkle like a star in a pair of pink patent sling-backs and a lilac tutu. (For students of the English language - the previous sentence contains examples of hyperbole.)
By now you are probably getting the idea - Thursday was a good day, a day to be savoured, an eagerly anticipated belle jour. If I were asked what colour Thursdays were, I would have said a bright lustrous green full of promise for a long leisurely weekend.

But now, flippin 'eck now - Thursdays are a doom-laden shitty brown. Thursdays are the day after the day in which I swallow the devil's droppings. Yes folks, Wednesday is the day I take methotrexate (see below); so Thursday is now the day when I try to hang on to the contents of my digestive system - a task not unlike carrying a bowl of carrot and tomato soup across the deck of a tramp steamer in a force nine gale - it's difficult to get to the other side without some spillage.

So now, in a move that all right-thinking people will welcome, I declare Wednesday to be the new Friday. So whilst you slave away at your soul-destoying, backbreaking labours, the boss breathing down your neck eager to find fault, and less than half way through the working week - I will be found engaged an enviable variety of delightful and engaging sofa-based activities* - and trying to forget that tomorrow is Thursday.


* - listening to the radio, watching videos, pratting about on the computer, munching Mars bars, reading, and maybe, just maybe, a little light dusting

Poisoning myself...

... my joints are getting better - I think I can now descend from the fence, and admit it in writing. I've been superstitious about acknowledging the improvement, lest, pride coming before a fall, I found I was just having a few good days in a row. But the improvement is sustained. I'm not pain free, and I'm often very tired still, but the stiffness and swelling have lessened and I don't feel as ill....

but, and it's a big BUT....
the main drug I am taking - methotrexate (mtx) - is making me feel pretty awful. This is no great surprise as mtx is highly toxic.
The hope is that in taking it, the benefits significantly outweigh the "costs". This would be more acceptable if mtx cured rheumatoid arthritis (RA), but it doesn't, it only slows the disease down; and unless your RA goes into remission, taking mtx is a life sentence.
When you start taking mtx you take a small dose for a while, in my case 7.5mg a week, and gradually build up until your symptoms all but disappear, or until the toxic effects become intolerable. This process has taken two months so far and last Wednesday, 7pm, I took my first dose of 15mg. By bedtime I felt sick, I was up half the night, and the next day I spent in bed - I was very nauseous, had diarrhoea, stomach cramps, dizziness/motion sickness and felt completely knackered - all in all an hilarious package of symptoms. And I'm still feeling queasy on Sunday morning.
Longer term, other effects have also been building up - irritability, motion sickness, depression, loss of appetite - for those who know me well this is a big-y - horrible taste in mouth and a couple other things too personal to mention here.

These things are all to be expected - this page shows what people taking mtx experience - both good and bad.

What I have to decide now is if I can tolerate the bad effects, set against the good the drug is doing....

polonium 210

...I worked as an industrial chemist many years ago (how I ended up working at a CAB is a long and complicated story) so when it became known that polonium 210 (210Po) had been used to kill Alexander Litvinenko, the chemistry nerd in me needed to know more about this material - and what I learned astounded me -
- 210Po is an extremely rare material - only about 100 grams in total are produce each year - that is roughly a one inch cube
- 210Po is 400,000 times more toxic than cyanide
- one gram of 210Po is enough (if effectively delivered) to poison 100 million people (nearly twice the population of Britain)
- a particle weighing only 6.8 picograms or 0.000 000 000 0068 grams is enough to seriously damage the health of a single person
- 210Po is extraordinarily radioactive, however the radiation it produces cannot penetrate a piece of paper - it is only dangerous (broadly) if some gets inside you
- 210Po is hot in more ways than one - one gram of it gives of as much heat as 150 watt light bulb
- 210Po is so radioactive that the air around a piece of it glows blue

All of these facts make it extraordinary that is was chosen by Alexander Litvinenko's killers - it is a truly sadistic way to kill anyone; it leaves a clear trail of where it has been (both before the poisoning and after) and it is possible (by using a kind of chemical finger-printing) to track down where it came from; the risk to the person administering it is extremely high, as are the risks to other people who come into contact with the victim, the killers, or those who are unfortunate enough to simply go to the places where the victim has been.

the drugs do work....

...well sort of.... I think.... I hope...
I swallow 90 tablets a week, and take seven different drugs to control rheumatoid arthritis (RA)-

• methotrexate (mtx) - a disease modifying drug (DMARD) that works (probably) by suppressing my "over-active" immune system - RA is caused by the body's immune system attacking the joints (and sometimes lungs, eyes and heart). Unwanted effects of mtx include nausea, diarrhoea, hair loss & liver damage. It is highly toxic, and because it's so toxic, the dose of mtx is built up gradually over a period of six months - this means it doesn't start to work until you've been taking it 3-4 months


• diclofenac - an non-steroidal anti-inflammatory (NSAID) - reduces inflammation in my joints - unwanted effects include drowsiness, stomach irritation and increased risk of heart attack. Known in our house as "dic" - as in "Have you taken your dic yet?"


• depo-medrone - a steroid that has powerful anti-inflammatory effects - but very serious unwanted effects, including muscle wasting and osteoporosis, mean I can't have much. I currently get a long-acting steroid injection every 6 weeks, but I can only have a few each year.


• omeprazole - helps prevent the stomach irritation/bleeding caused by diclofenac


• folic acid - helps suppress some of the side effects of taking methotrexate


• codeine - opiate pain control - 'cos RA is a very painful disease. Unwanted effects of codeine include constipation and drowsiness, and withdrawal when you stop taking it


• paracetamol - non-opiate pain control - unwanted effects include liver and kidney damage


• I also have available, fentanyl patches - powerful opiate pain control in the form of a slow release patch.

I'm taking it on faith that all these drugs are doing something. Although I still feel lousy a lot of the time, I assume I would feel lousier still if I stopped, but I'm certainly not going to stop just to find out.... it's a bit like - does the light go out when you close the fridge door?

take four times a day with food....

.... I've just counted out my drugs for the week - 90 odd tablets - 7 different drugs - and on top of that I have a long-term, slow-release injection of steroid. Keeping up with all these pills became so challenging - how many of which, when - and which ones need to be taken with food - that I gave in, and started using one of those pill organisers. It was a hard decision - they are in my mind so associated with being old and disabled - and those are two things which no-one wants to be, or feel.

So every Wednesday morning, first thing, you will find me popping pills out of bubble packs (a challenge when your fingers feel like sore sausages) and counting them into the pill organiser....

marooned...

... stuck on the sofa again (or is it a settee?) with pain in my limb joints, and feeling lousy - I could feel more comfortable if I took one of the various tablets I have - all of which are the kind of pain relievers fingered in a number of recent studies for greatly increasing risk of heart attack - which for a fifty five year old plump man is something of an invidious choice.
On the plus side - I did get a good nights sleep last night which always makes the world seem like a better place - especially when it breaks a run of bad nights...



...onward and upward