Category Archives: Rheumatology appointment

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.

An inconclusive letter

It’s not  been a great few days as far as my PR goes. I’ve had two quite painful flare ups. Sunday night’s came on at about 8 and got worse and worse til bedtime. I managed to sleep okay, with the aid of codeine, but felt really groggy and foggy on Monday. Not sure if that was down to the codeine or just the attack itself. By tea time on Monday the pain had all gone from my hands and was mild in my shoulder. Tuesday was a good day in terms of both energy and pain – in that I had lots of the former and none of the latter. Unfortunately, though, I started to get another flare up in the evening. It came on quite quickly. 9.30pm. No pain. 10pm: creeping pain in the fingers of my right hand and sharp pains in my shoulder. By 10.30, my hand was stiff and very painful while the shoulder was so bad that it was really agony every time I moved in bed. A heat patch, two hot water bottles and some more co-codamol meant that I got some sleep but it was by no means enough, as I dropped off sometime after 12 and woke at 6.

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A positive consultation

I woke up to a multiple joint flare up this morning, and was sort of relieved that I would have something ‘physical’ to show the consultant at my appointment today!

It’s been just over three weeks since my disastrous consultation with Dr ‘Y’, and I still feel fragile about it. So, even though I was looking forward to trying to make progress about changing my disease modifying drugs, I was also really nervous about how today’s consultation might go. On arrival, I was relieved to find that I was actually going to get to see Dr S. Even so, I was pretty nervous while waiting, especially as Dr Y was also working the clinic.

The consultation itself went pretty well. Why all doctors can’t be this sympathetic and reasonable? It didn’t start too well though. Dr S had already received my official complaint about my treatment at the clinic over the years, and the particular consultation three weeks ago. He pointed out to me that it would take a considerable amount of his time to investigate fully and deal with the complaint properly and even then, I probably would not get the outcomes that I desired.  Thankfully we didn’t dwell on this too much, and we managed to move on to actually discuss both pain management and a new course of treatment for me.

I’d brought a couple of abstracts of articles detailing the use of antibiotics in the treatment of people with rheumatoid arthritis. Thankfully, unlike Dr ‘Y’, he was not threatened by me bringing in what I’d found, though he did point out (reasonably) that he could not make a decision there and then just on a quick reading of two abstracts. We did discuss it a bit though, and he did recall that on my return from working overseas, I did report fewer flare-ups while abroad and agreed that it was interesting that I had been taking antibiotics at the time. He explained that initially, rheumatoid arthritis was thought to have been caused by an infection and that antibiotic treatment for it was not actually new. Apparently, people with rheumatoid arthritis used to have their teeth removed and their appendixes taken out as a way of treating it!!  Thankfully things have moved on from then, even though it’s not really understood all that much more I think!

Anyway, so antibiotic treatment isn’t a new thing at all, but it has never been shown to have a high enough success rate to be a regular treatment. However, it does show greater success with reactive arthritis apparently. Thankfully, he agreed that my case was ‘unusual’ because Palindromic Rheumatism is so little understood and that he could understand my reluctance to move up to Methatraxate if there was another possible route to go down first.

I told him that I was probably in some sort of pain or flare-up about a third of the time and that it was really affecting my quality of life. I know preventing joint-damage is generally the priority for a rheumatologist, but with PR, that’s less likely to happen because of the nature of the condition. So as far as I am concerned, my priorities are just about not being in pain (or exhausted) as much of the time as I am at the moment. Thankfully he listened to this sympathetically. We finished the appointment with him agreeing to go away and read the full papers that I had brought abstracts of, and possibly do a little more research to see what else he could dig up.  He promised to get back to me with a decision in a few days.

I finally feel as if I’ve been taken seriously, and almost have a glimmer of hope that there could be something worth trying that could reduce my flare ups. Watch this space.