Stable... Not great

I've been quiet recently. I guess this means that things are stable. I'm not sure stable is necessarily a good thing though. I definitely have a lot of room for improvement.

I've now been taking methotrexate for a couple of months. This is a real mixed blessing. I'm pretty sure that I'm getting some positive effects but for the first few weeks the pills made me feel terrible; they would wipe me out much harder than the arthritis ever have. I think I'm now coping with the side effects but the dose isn't strong enough to cope with all my psoriasis symptoms. I should be having regular reviews but it seems like they've made a mess of this a bit.
I guess I could be chasing the hospital harder. To be honest the last couple of appointments I've had to wait over an hour after the scheduled time. What should be a quick late lunchtime appointment turns into a whole afternoon off work. This isn't making me that keen to go back, especially when you're seeing a doctor that has barely skimmed your notes and provides no useful insight.

Dactylitis Again

Thursday morning saw me being squeezed in with an unscheduled rheumatologist appointment. It turns out that when you do cancel a 6 week appointment and turn it into a 20 week appointment then things are liable to deteriorate. Currently it's dactylitis of the index finger on my left hand.

In my pre NHS days I would have had to pay about £200 to get the finger injected with steroids. I would definitely be sorted pretty quickly but I could never afford to have any more investigation done. With the NHS I've had to wait a bit longer but not only will I get my inflammation sites injected but they are also going to investigate with ultrasound (would costs thousands to do privately) and speed up my change of medication.

I definitely couldn't afford the treatment I need privately but there appear to be a big caveat with NHS care. They will only treat you once it's become the last option. I just can't believe that it's cost effective. Had they changed my treatment earlier I wouldn't need thousands of pounds worth of investigations.

See you in 6 weeks... er... make that 5 months

When you leave a hospital appointment with them requesting to see you again in 6 weeks you somehow imagine that is what will happen. Apparently not if somebody goes on holiday/resigns/gets fired. They are seemingly incapable of redistributing the workload amongst the remaining staff or hiring a replacement.

My original appointment was for July 18^th. The rescheduled appointment is for October 24^th and apparently there isn't anything free at all between those dates. My only alternative is to ring up once a week to see if there are any cancellations; they don't have a standby system at all.

I'm not that fussed that I can't have an appointment in 6 weeks. That's not a long period of time and as long as my medication is vaguely stable I've got no concerns about stretching that a bit. 20 weeks, however, was more than enough time for me to develop the condition, have to give up my career and start a new career. My hope is that this medical trial is going to start soon as that's the only way of getting timely treatment.

Inhibiting COX

They've got me on a great new medication now. It's called Etoricoxib and is another anti-inflammatory drug. I had to switch medication because I developed some pretty crippling inflammatory back pain and Diclofenac is pretty rubbish at tackling that.

Etoricoxib / Arcoxia

Etoricoxib, better known as Arcoxia, is a COX-2 inhibitor. Most standard anti-inflammatories inhibit both COX-1 and COX-2. This is a bad thing. COX-2 is the cause of inflammation around the body but COX-1 is responsible for the proper functioning of the stomach. In fact, stopping COX-1 from doing it's job makes you pretty much dependent on pills to protect your stomach and prevent ulcers. Etoricoxib is in theory much safer as your stomach is left pretty intact.

Why in theory?


Arcoxia is a pretty new drug and the evidence behind it isn't perhaps as good as it should be. Because of this it's not licensed for use in America at all. Here in the UK you can get it prescribed on the NHS but it's not as easy as it could be. Only certain hospitals stock it due to the cost. It is possible to get though.

Magic!!!!


The Arcoxia has really transformed me again. Just as I was starting to get angry and miserable it's cleared up a lot of the pain again. It also means that I only have to take pills once a day, which I can normally remember, rather than twice a day, which I frequently screw up.

From The Pharmacy

How long?

Yep. Average waiting time at Guys Hospital Pharmacy is apparently 144 hours. Luckily, with a bit of charm I managed to get my pills in just 1 hour.

From the waiting room

I'm sitting here waiting for my appointment. Apparently Holocaust documentaries are where it's at. I guess most of the patients here remember it the first time.

Sleep Does Good

I've been trying to cut down the medication that I've been taking. I'm convinced it's not doing me much good. I think it's pretty much turned me into a burping and farting machine. I'm still stiff most days that I don't take it but there is a definite pattern. Rather than being particularly stiff in the mornings, which I am a little bit, I am now most stiff when I am tired. If, however, I stay in bed for 15 hours in a day, most of it asleep, I can pretty much enjoy the rest of the day with no signs of inflammation. If only I could schedule my life around sleeping 15 hours.

Still no new on the trial. I'm starting to doubt whether it is the right thing to do. My symptoms seem to be largely manageable with enormous periods of rest. I just have to sacrifice my weekends to sleeping.