Monthly Archives: July 2012

An interesting piece of research

This morning, Arthritis Research UK tweeted a link to a report about some research, which found that “doctors and patients ‘differ on perception of rheumatoid arthritis disease activity’”. The research, done in Austria, looked at RA patients who had started to take methotrexate for their condition and assessed how differently they perceived their disease activity. Analysis found that while patients cited joint pain as the reason for their perceived change in disease activity, rheumatologists focused on joint swelling.

I find this research both interesting and reassuring. While my rheumatologist seems solely concerned with whether or not there is visible swelling and inflammation, I’m more concerned with the fact that I have some kind of joint pain for more than a third of the time. Of course, visible joint swelling is more likely to result in permanent joint damage and obviously, I don’t want that. However, as well as being concerned about my future, I’m also focused on the present and my quality of life.  While I’m glad that I don’t often get visible swelling when I’ve got a flare up, the fact is, I’m still in pain, my mobility or dexterity is still affected and often limited and my disease is still active. The fact that I do not (often) get visible swelling (though I do sometimes), was the reason cited by my consultant to postpone trying the methotrexate.

Naturally, both my rheumatologist and I are concerned with stopping the disease from progressing and from causing permanent damage. However, I often have the feeling that this emphasis has meant that the quality of life aspect of NOW is being forgotten. Even though I’ve had this condition for over eight years now, it’s only last year when I actually managed to get a referral to the pain clinic. I would have thought that someone in pain for over a third of the time should get a referral as routine within at least a year of diagnosis. If my GP and rheumatologist had giving joint pain equal weight with joint swelling, perhaps I would have done.

The article on the website quotes the research as saying that “many times there is a discrepancy between patients’ and doctors’ views of disease activity, with doctors providing a better rating than the patients”.  This somewhat also reinforces my perception that the lack of physical evidence diminishes the severity of my condition in the eyes of the professionals. Just because my flare-ups don’t come with visible swelling, does not make them any less difficult to deal with, or any less debilitating.

Most of the doctors and consultants have a thorough theoretical understanding of the diseases they deal with.  I wonder whether their attitudes and understanding would change if they were actually able to experience flare-ups for themselves. Of course, this isn’t practically possible.  In the meantime, I’m welcoming the news that Arthritis Research UK is “funding a study that aims to develop a new tool for measuring disease severity which takes into account the personal impact of the disease and factors that patients – not just those with medics – consider important.”

More about the Arthritis Research UK research can be found here:

Daunted by new drug regime

I saw my consultant two weeks ago and he decided to follow the pain management clinic’s advice, which is to recommend that I try taking a drug called Gabapentin instead of moving onto Methotrexate. Gabapentin is not a ‘disease modifier’ drug, but one which is supposed to specifically target the pain and flare ups (rather than the causes of them). Right after seeing the consultant, I came down with a virus so I wanted to wait til I was completely over it before starting on a new drug regime.

So, today is day 1 of taking Gabapentin. As always, when I am taking new drugs, I’m pretty nervous about the potential side effects. As ever, I’ve made the mistake of reading the list on the leaflet. Feeling drowsy and tired are the most common – as if I need drugs to make me feel any more tired! Other side effects include anger towards others, confusion, mood changes, depression, anxiety, nervousness and difficulty with thinking.  Hmmmm. Not particularly appealing given my history of depression. Joint pains are another ‘common’ side effect to look for!

What if I’m one of the unlucky few who get these side effects? Does that’ll mean I have those symptoms TWICE as much as before?!

I have to gradually build up the dose of this drug, so I think it’ll take about a week to know if I’m getting any side effects, perhaps a little longer. I’ve have had a few flare ups in the last couple of weeks, so I guess if I’m pain free for a while, then it might be working – but we still have the usual “is it working or is it just a mild period” question.  I am also enlisting the help of my boyfriend so that he can judge whether I’m any more dopey and fatigued than usual!

On another tack, I discovered that the NHS is now no longer approving prescriptions of three months at a time. Which means that I have to get a new prescription for my hydroxychloraquine every two months instead of three (and this drug too, if it works). Which therefore means that having Palindromic Rheumatism just got more expensive.