Drawing conclusions is never easy

My experiment with antibiotic therapy will soon come to a close. I’m due to see my consultant at the end of next week, and the new GP the following Monday. Things had improved quite a lot in March and April with fewer flare-ups than I would otherwise expect. Energy levels were still pants, but I don’t know that the antibiotics would have improved that aspect of the condition or not.

Things took a turn for the worse in May. I had some kind of pain or flare up for half of the month. Most flare ups weren’t particularly BAD or debilitating, but it did lead me to wonder that perhaps my arthritis was just mild in March and April rather than it being due of the antibiotics working any magic. So far in June, I’ve had pain almost every day. Again, nothing too debilitating, although annoyingly it’s been in my knees more times than I would like. Nothing’s been so bad in the past week that I’d need to take any time off work, but it is still pain and I’d rather not have it!

So, I’m forced to wonder that if it is working, is it working enough? Should I take it for another three months to see if it’s stopping all the really BAD attacks, or should I just give up? Should I see if I get worse if I stop taking it? Or should I move straight onto methotrexate?

I’m not that disappointed – after all, at least I haven’t had any really debilitating flare ups in the past three or four months. But I’m just weary of all the questions and decision-making. Not for the first time, I wish that the medical profession understood my condition better. I wish there weren’t so many uncertain choices to make. And I wish that the drugs on offer didn’t have so many scary-sounding side effects.

On the positive side, my energy levels have also been inconsistent – which is a positive thing, because it’s meant that some days, I’ve had lots of energy reserves! On some days, I’m still waking up feeling as if I’ve had no sleep at all. On others, meanwhile, I’ve had an excess of energy! I even managed to find enough energy at the end of a working day to dance on stage with Angelique Kidjo when she played Manchester, (along with around 15 other people). It was a totally exhilarating experience and I was so proud of feeling brave enough to do it! I’ve managed to be relatively consistent with going to zumba and am still cycling most of the time. Some days, I’ve even had enough energy to cook a proper meal at the end of the day. It happens so sporadically during the working week that it seems like a major achievement whenever I do manage it!

I’ve also been assessed for Access to Work benefit, which is something that I only recently found that I was eligible for. I was surprised to find that the in-work assessment was actually useful than I expected with a number of suggestions and recommendations that I might follow up, whether or not I get funding for them. I’ll write in more detail about it in another blog – probably when I get the assessment back in writing.  I’ve actually got quite a lot of work on at the moment – hence the scarcity of blog posts – but I haven’t forgotten that the blog exists and will do my best to update on both the assessment and in the consultant appointment as soon as I can.

A doozy of a flare-up

So, it seems that I spoke too soon last week, as pretty much, the afternoon after writing that blog, a nice old flare up started to creep up on me. It wasn’t too bad at that point – creeping into my hands for most of the weekend, making them stiff and sore. However, on Sunday my knee got pretty bad. I wondered if I’d done something during a home pilates workout the day before – perhaps I’d pulled something when I was doing a stretch? By Sunday night, going up and down stairs was getting too difficult  and so once I’d gone up to bed early evening, I stayed there.

By Monday morning the knee pain was all gone. So not an injury then but part of the flare up. No pain for the rest of that day until…. until I got home late that night. I’d gone over to Leeds to see one of my favourite bands of the moment with a few friends. We’d got back into Manchester at 11.30 and by 12, I was already in bed, having shelled out for a taxi home from the station. The knee pain was creeping back on, but I stupidly thought that it would be fine as I’d sleep it off as I had done on Sunday.

It was not to be. The pain creeped up and up on me in the knee, my hip and in my hands and fingers until it was louder than my urge to sleep. I lay in bed, dozing off and on and listening to my audio book of the moment (Bill Bryson’s Notes from a Small Island) and praying for sleep. By 5am, I realised that I was no longer half awake but properly awake and I made myself hobble out of bed and get a heat patch to put onto my pyjama bottoms to try and bring some relief to the poor knee. By the morning, the pain was still pretty severe. Walking was pretty difficult and some of my fingers were swollen too. There was no way I was going to get downstairs, so I was particularly thankful that my partner (recovering from a heavy cold) was well enough to bring my breakfast up for me.

I was supposed to go back to my expert patient programme but there was no way I was physically or emotionally up to it. I’m always a little emotionally fragile during a bad attack, even more so when I’m also hormonal AND haven’t slept. So when I realised that I was not mobile enough to go to zumba, I just burst into tears!

I spent the morning in bed, feeling a little sorry for myself, but mainly being pissed off at missing my dose of happy through Zumba. The attack started to ease off at around lunchtime and by the afternoon I was able to cycle (it was easier on my knees than walking) and visit a friend, bringing along copious amounts of cake with me. By the evening, the pain was all gone, and all I was left with was exhaustion from not having slept the night before.

As I write, it’s now Thursday and I’m pain free again. Seven years into this condition and I still get surprised at how rapidly a flare can come on, and how rapidly (relatively) it can completely disappear again. The other thing this flare highlighted is how useless most of the painkillers are. I have been prescribed Naproxen, but you’re supposed to take it with food. Pretty useless if an attack starts in the middle of the night. Mind you, when I have tried taking them with food, they didn’t do much anyway.

I’m not too disheartened by this week’s flare. It only really left me incapacitated for one day, which on the scale of things isn’t too bad. I just wish it hadn’t been my zumba day! Next time it strikes, I hope that its timing will be better!

Stabilising?

I can’t believe it’s been two weeks since I last wrote my blog. The time has zipped by. Happily, I’ve not written because I’ve been really busy with work, rather than because I’ve been in too much pain or too tired to. In fact, I’ve had another relatively calm and stable two weeks, with good energy and only mild pain on a few days. Could it be that the antibiotic medication is finally working? I guess if I don’t have any major flare ups for a few more weeks, we could maybe conclude that. Though you never really know for sure.

Expert patient programme
I didn’t make it to the Expert Patient programme this week as I was down in London for work, but I did make it last week. Unfortunately again, I didn’t find it all that useful. This is partly because I have been living with my PR for so long that I already am quite an ‘expert patient’; I am already doing most of the things they suggest. It’s also partly because I don’t really like the way that the course is being delivered. Being a professional facilitator/trainer, it’s hard not to sit there and see improvements that could make it more interesting, more imaginative, more interactive and… more fun! During an exercise to talk about our negative emotions, I didn’t like that we were told WHICH emotions to talk about (rather than letting us choose for ourselves). It was also quite a negative exercise as it really brought me and the woman I was talking to down. Although there was a brainstorm (now called a freethink) on how to deal with those emotions, we didn’t actually practice anything and I was left having remembered lots of negative feelings (which I wasn’t feeling before we started to talk about it!) without actually being given the space to do something about it there and then.

I’m now an experiment … of one!

It’s been a pretty good few days since my last post. I have had minimal pain with some days being completely pain free altogether (like today). And then today, following last week’s letter from the consultant telling me that he didn’t have any objections to me starting Doxycycline for my PR, I saw my GP. She was pretty sympathetic, and questioned the small dose that he’d suggested I take.  We agreed that we have no way of knowing that the doxy was behind an improvement in symptoms while I was overseas, – it could have been a whole host of other things, including the change in diet (lots of fish) and weather (very sunny, not much rain). However, she said that she was willing to stick her neck out and prescribe me three months of the doxy at the same dose I had been on. She said that as this is not the regular treatment for PR, she really is sticking her neck out and that, after she retires in March, there are no guarantees that her colleagues will do the same for me. However, by then, I will hopefully have a good idea of whether my attacks are less frequent (or, fingers crossed, gone altogether?), and she did say that if there is good evidence that it is helping, that will be in my favour. She is writing to Dr S. to let him know what is going on and to ask whether I’m to continue on the Hydroxychloraquine as he did not mention that at all in her letter.

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.

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.