A quieter time

I stopped taking methotrexate back in December, so I thought I’d report back on how things have been since then. First of all, I noticed the difference in my energy, mood and anxiety almost immediately after stopping. The rheumatology nurse said it would take two weeks to  completely be out of my system, but I started to feel more ‘me’ before that. It was a real relief to get some energy back, and lose some of the dark moods and anxiety that had plagued me for about four months. I hadn’t really expressed to many people the severity of the anxiety that I’d been living with whilst on the methotrexate. The fearful thoughts weren’t taking over and thanks to my mindfulness training, I was able to basically live with them without believing them, but it was hard work, constantly living with a level of mental anxiety that just is not me.

Having the energy to enjoy life – especially around Christmas – meant that I was certain coming off methotrexate was the right decision, even though I did have a few painful flares around the Christmas period. And then, amazingly, I had over a month of being free of flares, fatigue and pain. Towards the end of my time taking methotrexate, I’d been overdoing the sugar, and also cheese – two food groups that I can very easily overeat. So in the New Year, I decided to massively cut down on sugar, and to totally give up dairy. At the same time, I went days without pain, flares or fatigue.

The longer I went without a flare, the more I wondered whether cutting out cheese was a factor. After the first week or so, I thought that it could just be a co-incidence. After two weeks, I was a little hopeful, though I still conceded that it could be a coincidence. After three weeks, I marvelled that this was the longest pain-free period in at least 3 1/2 years. After a month, I wondered if I’d finally cracked it – perhaps dairy is one of my PR triggers and if I just stayed off it, I’d be ‘normal’ again?

Five weeks of no pain is enough to let the hope really slide in. The hope that you’ve maybe entered remission. The hope that perhaps you can live a normal life again. The hope that you’ve found your trigger and that if you just avoided that trigger, you’d be free of flares. That wasn’t to last. Last week I had one night of pain and stiffness that reminded me that with PR, it’s never as straightforward as you’d like it to be. Then yesterday, I had night flares and woke not being able to move the fingers in my left hand, and a sharp and persistent pain in my right wrist.

The pain wasn’t as bad as the disappointment. I managed not to give in to a spiral of thoughts saying things like “you should have known it wouldn’t be as easy as that” and “serve you right for getting hopeful”, but they were there nonetheless. So I had a bit of a cry, and reminded myself that I’d had a long period without pain and that, in and of itself was still worth celebrating. And so I got up, massaged my hands and dragged myself to yoga, which I know helps both mind and body, even though I had to spend a lot of the class in child’s pose resting and feeling sad.

Today I’m pain free again. I’m still going to stay off cheese for another month or so. Just to see. And I’ve been keeping a food diary since the new year, so perhaps that might shed some more light on things in a couple of months when it’s had time to build up some decent data.

In the meantime, the most recent flare has reminded me (once again!) that hopes about a pain free future are all very well, but living a day at a time is the only way to live with PR, because you just never know what’s around the corner. And five weeks without pain, really IS still something worth celebrating.  I won’t totally let go of the hope that one day that might extend to longer, but I’m not going to cling onto it either. I’ve lived with this for long enough to know that spending all my energy just putting hopes or fears into a future that may never  happen just stops you from really living here and now. And here and now really is all there is.

 

end of the methotrexate experiment

I have taken my last dose of methotrexate. I gave it 4 1/2 months in the end, and still have no idea of whether it was actually working. I do know, however, that the side effects just became too intolerable. I felt way more fatigued whilst on methotrexate than I ever did before taking it. That, coupled with some pretty unpleasant mood swings, meant that I felt that it just wasn’t worth it to keep on with it. I ended up not feeling quite myself more often than not, and just felt an inexplicable sadness all too often that didn’t seem to tally up with hormones, or what’s actually happening in my life.  Sure, I get down sometimes, and sometimes this can turn into depression, but this has been more erratic than that, feeling fine one day, and in the depths of despair the next. It left me feeling quite unstable some days, where I’d burst into tears at the smallest thing. While I can be super sensitive sometimes, this has happened way more than ‘normal’ for me. Given that, even while this was going on, I was still flaring off and on, it just hasn’t felt worth continuing with this powerful drug.

I have another appointment at the rheumatology clinic in mid January, so I guess I’ll start exploring next steps then. Until then, I hope that having stopped taking the methotrexate a week ago, I’ll start to feel back to my normal self very soon. Hopefully I’ll regain some of my energy and motivation and feel at least a little more stable in my mood and emotions.

While I’m here, I’d also like to thank everyone for keeping reading my blog posts, and sharing my PR journey. Thanks also to everyone who has commented or contacted me personally. I feel very grateful to be part of a community of people who can often feel neglected and not heard by medical professionals. It’s good to know that by sharing our stories online, we don’t have to feel so alone. I hope everyone reading this has enough ‘spoons’ to enjoy the festive season and is as pain free as it’s possible to be.

Happy holidays!

Advice I wish I’d received

I’ve been contacted by a few people over the years about how helpful my blog has been, and how good it is to connect with others with the same condition. I have been thinking about how frightening it was when I was first diagnosed, and how much I would like to have had some advice about how to get taken seriously, and how to handle appointments with health professionals – whether it’s the GP or rheumatologist. So I thought I’d put a page together with some hints and tips for people which will sit on the site permanently. Please feel free to add comments and your advice to the page.

three months in

According to the literature, methotrexate is supposed to kick in after about three months after your first dose. I’ve now been on the medication for 13 weeks, so I should be starting to see an improvement in frequency or/and severity of flare ups sometime soon – if it is going to work, that is.

People keep asking me if it’s working and seem to find it difficult when my reply is “it’s still too early to tell”. I guess, three months is a long time to people, and there is an expectation in our culture of wanting things to happen immediately. After all, when you take a pill for a headache, you would expect your headache to go pretty soon afterwards. Unfortunately, the drugs for arthritis don’t work that way. Three to six months is what I’ve been told, so I’ve still got a way to go before I know for sure what difference it’s going to make.

One thing I know for sure is it definitely hasn’t started working yet – or if it is, it’s not doing a good enough job. I’ve been in pain most days for the last two or three weeks. It’s mainly been in fingers, wrists, hands and shoulders – though thankfully not all at the same time. It’s been flitting from joint to joint in its mysterious way and it hasn’t been much fun.

I’ve also noticed some unwanted side effects from the medication. My mood has been quite erratic (more so than usual), with me feeling quite down and tearful some days, and fine the next. My fatigue has also definitely been a lot worse than it was before I was taking the drug, with more frequent very fatiguey and foggy days, and feeling pretty tired more days than not. I’ve also noticed it has affected my ability to exercise  – I am getting out of breath a LOT quicker than I would expect – and my legs feel heavy and tired when I cycle or do zumba, in a way that they didn’t used to do quite so quickly.

I’ve been tested for folate, iron and B12 deficiency, but that’s all fine, and so it’s likely just to be a side effect of the methotrexate. A pharmacist explained that the drug could be impacting on the body’s uptake of oxygen, so things are fine when I’m at rest, but when my body needs oxygen – when it’s cycling, walking upstairs or zumba-ing – it’s just not getting it quickly enough, hence getting out of breath. He didn’t say whether my body would get used to it. It’s quite demoralising.

It’s also quite demoralising having these side effects but no improvement yet. I’ve decided to give it to Christmas before making a firm decision – but I’ve been a little low about the choice that I might be faced with if it DOES work: Do I plump for a) no pain but fatigue,  tiredness and really depressed/low days, or b) having flare ups as before, but increased energy levels. It’s not really a great choice is it?

I guess I’ve also been a little low because there was always this slim hope at the back of my mind that methotrexate would somehow be the ‘fix-it’ cure that I was looking for. So if this doesn’t work, then I have to accept (once again!) that I’m probably stuck with this disease, with the pain, fatigue and all the other things that go alongside it. Of course, there might be other drugs to try, but as PR doesn’t cause joint damage, I’m unsure whether I will be prescribed them.

On the plus side (because there is always a bright side), I’ve had a fantastic yoga holiday in Iceland where, despite flare ups nearly daily, I managed to get through some amazing yoga classes with my body doing things I honestly thought it would never be able to do. The experience of doing daily intensive yoga classes has left me feeling much more IN my body than it was before, and also feeling quite positive about my body, despite its limitations. I know that yoga and meditation is good for my mood and my physical body and it’s made me want to try and prioritise these practices even more.

Yes, that’s me! Despite frequent wrist flares (and with a lot of help getting up there) I managed to do a handstand. It did not cause any pain or flaring and it felt amazing knowing I have the strength to hold myself upside-down

Methotrexate update

Just a quick post update on the methotrexate. Obviously it’s way too early to know if it’s doing anything at all for the underlying illness. I’m only three weeks in after all. But so far, it does not seem to be disagreeing with me – in that the most common symptom that people have reported (nausea and sickness) isn’t something that I’ve had too badly at all. I’m surprised by this as I’d almost expected it to be terrible, as lots of people I know have said it was for them, but in fact, it has been quite mild, and definitely bearable. The rheumatology nurse said that if I hadn’t experienced it by now (that I’m on the full dose), then I would be unlikely to. So hoorah!

I also learned from the rheumatology nurse that echinacea is not recommended for people with auto-immune disorders, and she advised against taking it. It’s a herbal remedy used to strengthen the immune system and I usually take it at the first sign of a cold or virus, particularly during the winter. I guess that the reason is that if it works, it may provoke a flare up or something. I hadn’t particularly noticed whether it did or not, as actually when I am ill, I often am flare free (body’s too busy fighting virus to fight itself?). It’s worth knowing though, so I will see how I go this winter without taking it.

If that’s the advice, then it must mean that someone somewhere believes that echinacea DOES work to strengthen the immune system, so perhaps that’s good to know for everyone without an auto-immune condition!

 

Trying something new

After 12 years of living with palindromic rheumatism and experimenting with various lifestyle and dietary changes I’ve made the decision to start taking new medication in addition to the hydroxychloraquine that I already take.

Doing yoga and avoiding gluten and eating healthily has served me pretty well. But it has not cured me. I am still flaring. I am still fatigued. And I am still none the wiser as to what triggers a flare, or what will make it go away once it’s there.

I’ve resisted taking methotrexate for a long time. The side effects looked too scary, and I kept reasoning that as I was generally coping with my arthritis, there was little point in putting these scary drugs into my body.

But sometime over the last twelve months, my perspective has shifted a little. I experienced a three month wrist flare in the winter which led to a lot of stress and worry that permanent damage was likely. I’ve had scans and x-rays and luckily, that’s not the case. But even so, living with that constant flare for three months really did interfere with my quality of life and ability to do some of the simplest tasks. My yoga practise suffered too.

On top of that, the unpredictability of flares, and an extremely severe shoulder flare a couple of months ago made me think “You know what – you don’t have to live like this” and decide that it was time to try something new. I felt like a failure at first and had to work through a few feelings around that, and the fear that comes with starting something new and potentially as damaging to my health as the arthritis itself. But I reasoned – if there’s a problem, I come off it. If the side effects are horrible, I come off it. If there’s no change. I come off it. I’ll be no worse off than I am now.

As well as the fear, there’s positive emotions as well. The fact that methotrexate DOES work for a lot of people gives me some hope. I know people taking it with no side effects at all. And the idea of being pain and flare free, even if it only works for twelve months, is extremely appealing.

I started my first dose on Sunday, and will be taking folic acid four days later. I will be closely monitored at first (blood tests every two weeks) and will be careful to stay away from people with horrible infectious diseases as I will be more likely to catch infections and illnesses as a result of the drug.

I’ve been told that it will take around three months to know if it’s working, so for now, it’s a waiting game. I wait to see if there’ll be side effects and I wait to see if it’s going to work. In the meantime, I continue with the lifestyle changes that I know help me, even if they don’t cure me.

10 things you may not know about living with arthritis

It’s National Arthritis Week from 12th – 18th October and I’ve been asked by Arthritis Research UK  to ‘donate’ a blog post to raise awareness about the week. One of the suggestions was to do a Q&A – 10 things you might not know. The thing about arthritis is it isn’t really a universal condition, and affects us all differently, even though there will be things that we share (pain mainly!), so I thought the Q&A was a really good way to highlight this and how it impacts on my own life.

The condition I live with is called: Palindromic Rheumatism. Most people have never heard of it. Some medical professionals haven’t even heard of it. Palindromic means a word that is the same when you read it backwards and forwards. In the case of this type of arthritis, it means that the joint flares come and go. They can be in one joint at a time or many. They can be there for hours, days or even weeks. They can flit from joint to joint with no warning, and sometimes I can wake up with a pain in one joint, and go to bed with a pain in a completely different joint. There is no rhyme or reason to my particular PR. I can’t predict when I’ll flare or when the flare will go.

I was diagnosed aged: 34

How my arthritis most affects my day to day life: Because PR causes pain and fatigue, I have to be careful that when I don’t have any pain or fatigue that I don’t overdo it. Its unpredictability means that I sometimes have to cancel things at the last minute. It’s hard to plan when I don’t know how I’m going to feel. I can have loads of energy and do lots of physical things and brain taxing things. I can also have days when I can’t get out of bed and even formulating a sentence is too taxing on my brain. The one predictable thing about my PR is that it is not predictable. Even when I am not flaring or fatigued, I don’t forget that I have PR because I have to plan and manage my energy carefully. I also have quite a strict regime to help me live better with PR. I eat healthily (no meat, minimum dairy, no gluten at all, not much refined sugar), exercise often (most days of the week I will do SOMETHING), and meditate most days. I probably spend a lot of energy and time looking after my mental and physical health. I was already prone to depression before developing PR. Since developing PR, I am even more likely to sink into depression so the exercise and meditation is as important in keeping me mentally healthy, as physically healthy.

A new hobby / interest I’ve taken up since my diagnosis: The most significant thing I’ve learned or taken up since my diagnosis is learning about mindfulness and meditation. It has helped my mental and physical health enormously, and I use it in my work (teaching it to others), as well as in my daily life. I may not have decided to attend a course about meditation if I had not been trying to learn ways of managing my pain.

What living with arthritis has taught me: Living with arthritis has taught me many things. One of the lessons I’ve learned is to be grateful for the things that I have, and the parts of me that work, and not to spend too much energy on the things I don’t have and the parts of me that don’t work. I’ve also learned to live more in the present, than to spend too much time worrying about the future.

My advice for other people living with arthritis: Arthritis is one word to describe lots of different illnesses and everyone’s experience of it will be different. So my advice would be to spend time finding YOUR best way of living with it, rather than to think there is a ‘one size fits all’ way of staying healthy. Don’t give up trying new things – even if you’ve had it for years – and instead of fighting your arthritis (you probably aren’t going to beat it!), learn to accept and live with it. This isn’t the same as giving up. It’s simply recognising what your limitations are at the time, and making the best of it.

My biggest challenge/triumph has been: I was always so frightened of pain when I was younger. So my biggest challenge has been to learn to live with pain. There are lots of triumphs over the years, but my most recent biggest challenge has been to do a ‘crow’ pose in yoga. I can’t do it every time, and mostly I can only stay there for a few seconds, but this is a huge triumph for me, given that my wrists have been very weak due to the PR and flare a lot. Interestingly, they have flared less often since my yoga practice has intensified.

What gets me through a tough day: Some days are just tough! Recognising that some days are tougher than others and sometimes you just have to be EVEN KINDER to yourself and do whatever it takes to make that day bearable – even if that’s going to bed and crying!

How my friends and family help me: My friends and family help me  ENORMOUSLY by trying to understand, by offering to help when I need it, but not smothering me with help when I don’t.

This National Arthritis Week I’d like to say thank you to: everyone who’s been with me on this journey! That’s too long a list to type up now, but it includes all my friends, my family, my consultant, and my employer! Also, my yoga, zumba and pilates teachers for keeping my mind and body as healthy as they can be.

Arthritis is not just a physical condition

I haven’t blogged since December 2014! How did that happen?!

Mostly, it’s because I’ve been too busy, rather than too ill. I’ve been loving my work at Manchester Mind, though it does keep me pretty occupied and sometimes a bit stressed too. However, the fatigue and flares have been manageable, and I’ve not had to take any time off because of my arthritis so far. I’ve continued to stick to the gluten free diet, though I’m finding staying off the sugar slightly harder to stick to these days. Overall, however, I think I’m doing okay.

I’ve even managed to start trying vigorous and athletic styles of yoga and been shocked and amazed by what my body is actually able to do. I’m building up my upper body strength and even managed a headstand unaided at last week’s class.

So overall, life with PR is pretty positive at the moment.

But what I did want to write a bit about is a new development in my work which I’m pretty excited about.

Living with palindromic rheumatism – or any type of chronic condition – isn’t just as simple as living with the physical symptoms. The flares, the pain, the restrictions and the fatigue also have a psychological and emotional impact and this isn’t often taken as seriously by medical professionals. When the consultant asks how I am, he is interested in how bad my flares are, and whether there’s any joint damage. He’s not generally asking how I am coping with my PR. Coping with the unpredictability, with the chronic pain, the lack of sleep, and the fatigue isn’t always that easy. I think that sometimes the psychological and emotional impact of the condition can be even harder to deal with than just the physical symptoms. A friend with rheumatoid arthritis told me that she wished she was told when she was diagnosed that it wasn’t just a physical illness she had, but a mental illness too, its psychological impact has been so profound at times.

More than once, I’ve phoned the rheumatology nurse, or Arthritis Care Helpline  in tears. It might have been after a disastrous appointment with a consultant who hasn’t taken my symptoms seriously or just during a long flare when I’m at the end of my tether from lack of sleep and constant pain. The early days were particularly stressful and upsetting – when I didn’t know what I had, what to do about it, or what was going to happen to me. I didn’t have any coping skills, and it felt as though no one really ‘got’ what I was going through. It took 8 years before I was even referred to a pain management clinic – by which point I’d already learned the most useful tool I was ever going to learn – meditation and mindfulness.

Life can be stressful enough without a chronic condition, but throw in an unpredictable and little understood invisible illness which causes chronic pain, disability and fatigue, and stress increases massively. I can point to plenty of different stressors. There’s the frustration of not having any effective pain relief when I’m flaring. The stress of the pain and lack of sleep. The disappointment and frustration of having to cancel on friends, or having to take to bed from fatigue. Even people trying to help by offering ‘helpful’ suggestions or commenting “but you don’t look ill” can be a frustration and a stress. There’s also the stress of the financial cost of living with a long-term illness, and in the current economic climate with a whole raft of disability benefits being cut, this is a huge stress for a lot of people.

In the early days, I was often very low, worrying about the future or giving up on certain dreams. Sometimes I still spend a lot of time just wishing I didn’t have this stupid darn condition. Of course, wishing things were different uses up and wastes a lot of energy, and it’s something that happens much less since I discovered mindfulness. But it’s still something that I have to revisit time and time again and work on – the transition from resistance to acceptance. After all, why wouldn’t you wish you didn’t have a lifelong condition that probably wasn’t going to be cured?

One thing that’s been really rewarding for me over the past year is my job for Manchester Mind, which is running a ‘resilience’ course for people with diabetes or heart disease. The course teaches people cognitive behavioural and positive psychology techniques and introduces meditation and relaxation and stress management techniques too. It has really helped some people and I’m really excited because now we’re going to be offering the course to people with arthritis too.

I think this is hugely important. We don’t get taught these skills at school, and unless we are referred to a therapist or counsellor by our GPs, or gone of our own accord (not always affordable for many people), we don’t learn them as adults either. We don’t get taught the importance of relaxing and of deep breathing, and we don’t learn that we don’t have to believe the negative self-talk that can often drag us down into a pit of depression. We don’t learn that accepting pain and illness can be more beneficial to our mental health than trying to resist it. (This doesn’t mean giving up – a longer post is needed to explain this more fully!)

Teaching people these techniques and seeing them learn from each other, and integrate relaxation and meditation into their lives hasn’t just helped them cope with their conditions – it’s helped me with mine. And it’s not a case of such courses or techniques only appealing to a certain, narrow age range. The youngest person I’ve had on the course so far, is 20, the oldest 89. They’ve pretty much all said that they’ve learned something and it’s helped them in one way or another.

Thanks to some additional support from Arthritis Research UK, from July Birmingham Mind, and Manchester Mind will be extending the Building a Healthy Future course to anyone with arthritis. It’s completely free. It won’t make your pain or your fatigue disappear, but it will help you cope with all the extra mind stuff that comes along with a diagnosis of arthritis.I’m so happy to be involved and know that my work can help people with diabetes, heart disease and now arthritis too.

2014 – a Summary

It’s the penultimate day of 2014, which seems as good a day as any to look back over 2014.

I’ve been using the Rheumatrack App on my phone since October 2013, which means that, for the first time ever, I can look back on the year and have a realistic idea of how much PR has affected me.

The good thing about using an app like this is that you can export all the data – within a specified time frame – as a file, so it means I can get a good overview and even do a little bit of analysis.

On the app, I record my pain on a scale of 0 – 100. I also record where in the body I’m in pain and sometimes I add notes too. Most days, I enter the data in the early evening, but sometimes, if the pain changes (dramatically increases or decreases) there will be multiple entries on the same day.  I record something even if there is so flaring at all.

The year in Numbers

So, time for some geekery as I look at 2014 in numbers. There were 355 entries in total.

• 173 records out of 355 were COMPLETELY PAIN FREE! That’s almost half!  (48%). I’m pretty sure that is higher than it would have been in previous years.
• 89 of the records were values of 30 or less. That means that for a quarter of the time, I am not in much pain at all.

Adding them both up, this means, that ¾ of the time, I’ve been in no or neglible pain. I’d say that was a pretty good result.

• I had NO flare ups where the pain was higher than 85 (it’s at about 80 and above that I am crying in pain and can’t really function well at all) and only 24 days where the pain was higher than 65/100. this is only 6% of the time.
• Which leaves 21% of the time – (1/5^th) I was in some sort of uncomfortable pain, but could still function.

I had the longest run of pain in the early part of the year while there was a lot of stress going on in the house due to building work: 42 entries over February 14^th til the 25^th March. I had a long run again in the summer – 27 entries 19^th July – 14^th August. I wasn’t particularly stressed and can’t pinpoint anything to that particular run.

I had quite a few nice spells with no pain at all, with the longest being 17 completely pain free days in a row in May (4^th til 22^nd). This was also during and straight after my detox retreat in Spain. This may or may not be a coincidence.

Where do you flare?

Most of the flares in the early part of the year were persistent in my elbow and shoulder. Most common areas for flares continue to be somewhere on the hand – wrist, base of the thumb, or any of the finger joints. My toes are rarely afflicted, but they have flared once or twice. I had a jaw flare twice. My knees have been troubling me off and on, but it seems that this may be down to tendonitis. I’m waiting for a physio appointment to assess this further

What I have not recorded in the app much is my fatigue or energy levels. I have three days of note where I was completely incapacited with fatigue.

Diet stuff

Overall, I do feel healthier at the moment, despite flaring from time to time. My energy seems more manageable, my mood more stable and my ability to cope with my PR much higher than it has ever been. I’ve been gluten-free since April and have been sticking to a fairly ‘clean’ alkaline type diet about 80% of the time. I notice that when I eat more sugary things, my mood and energy levels are both affected. I’m pretty committed to this new way of eating – which is just a stricter and healthier version of the mostly vegetarian diet I had already been following. But now, I eat less dairy, no gluten, and cook a lot more from scratch than ever before.

What about exercise?

I have done very very well when it comes to exercise this past year. I have definitely found that a daily morning yoga practice with my energy levels, as well as alleviating the morning muscular aches and pains I have, possibly from the fibromyalgia. I did an amazing fitness bootcamp in March and completely surprised myself with what my body could handle. And I have continued to fit in various exercise classes into my working week. In May, I got a new job working for Manchester Mind, and I enjoy it a lot. What’s also great is that I am able to fit in my lifestyle around it – continuing with my twice weekly zumba classes and working my hours over 3 days instead of 2 1/2. As part of the job, I had to visit a lot of people around Manchester and so over the summer, cycled about 70 miles a month JUST FOR WORK!  I also did a 26- mile sponsored cycle ride and raised over £400 for Refugee Action.

Since I decided to prioritise my yoga practice first thing, my meditation practice has taken a bit of a back seat. There isn’t enough time to fit in both yoga and meditation every day in the morning, so in the days when I’ve not been able to do both, I tend to meditate right before sleeping.

Looking after my Mind is important too

During 2014, I also learned to lead others in meditation on the Breathworks course learning to teach Mindfulness for Health. I felt hugely self-conscious the first time I led a meditation. Previously I’d just read it off a script or played something on the Ipad when I’d led meditations before. I still feel a little self-conscious, but I’m getting more confident simultaneously meditating and leading. I also got such great feedback on the last course I ran (I run 6-week long stress management and emotional wellbeing courses for people with diabetes and heart disease) that my confidence has really been boosted in that area. My meditation practice has really been life changing and it really does help me cope when things are tough.

Looking ahead

I’ve got a bunch of goals and hopes for 2015, but my main one is to continue with everything I’ve been doing that helps my health – so that means sticking with the alkaline diet, keeping exercising and doing yoga as well as meditating too. I have two yoga retreats booked – a weekend one in March, and a week-long retreat in Morocco in May, which I’m very much looking forward to.

Of course, one of my hopes is that there will be many pain-free days ahead, and fewer ones full of pain, but at the end of the day, that is something that I’m not completely in control of. I really hope that sticking with my healthy lifestyle over a long period of time might mean fewer and fewer flares. I can live in hope. But I also know that my healthy lifestyle helps me cope better with pain and fatigue so even if it doesn’t ‘cure’ me, it certainly helps me live better and be happier.

Happy 2015! Thank you for reading.

 

Research into PR finally!

I have just returned from Chapel Allerton Hospital in Leeds where I was able to sit in on a presentation to the Patient and Public Involvement group about Palindromic Rheumatism and the research there into PR (funded by Arthritis Research UK) and also early arthritis.

There were three presentations in total, two specifically on PR. I think I need a little time to digest it all as there was a LOT of information given in a very short space of time (half an hour for each presentation). However, I thought I’d blog now about some of my initial impressions.

Firstly, it’s great to know that there is finally some research specifically into Palindromic Rheumatism. As anyone who has read my blog for a while will know, there is precious little research into PR itself. So, I was really pleased to hear Prof Emery say that PR was particularly interesting to study, NOT just for getting a better understanding of PR, but also for possibly improving our understanding of rheumatoid arthritis too – after all, some of us with PR will go on to develop RA. But not all.

Another thing he said –though not in his presentation – is something that I think is pretty important, but not something I have considered before. We were talking afterwards, and he said that there was something going RIGHT about my auto immune response in that it was able to switch itself OFF. I hadn’t thought about it in that way before. I mean, yes, I’ve often felt grateful that in ten years, I’ve got no obvious joint damage and have not apparently progressed to RA (though this does not mean I won’t in the future), but I’ve always thought about my inflammation and flares as something going wrong in my immune system, rather than thinking about the fact that I have days and sometimes weeks of no inflammation and pain as something going RIGHT! As Prof Emery said – there is something going right in that the inflammatory response switches itself off and I go back to ‘normal’, whereas for someone with RA, the switch is almost permanently set to ON (as I understand it)….

It leads me to think that it’s probably equally important to look at what’s going RIGHT with people with PR as well as what’s going WRONG in order to understand it better and possibly help prevent progression to RA – and maybe even prevent flare ups altogether? I had truly never thought of it like this before.

The second presentation was about the results of research into people who had a diagnosis of PR. The numbers were small – only 58, but the results were still interesting. Of the 58 people, 48% did not (during the time of the study) progress to RA, and 52% of them did. One of the most interesting thing about the findings was that there seemed to be three things that seemed to make it more likely for someone to develop RA (any one of them increases the risk of developing RA, but if someone has all three, that will increase the risks even more).

• Smoking. I find this particularly interesting. I had never known about a link between RA and smoking, and I can’t give up something I don’t currently do but it could be useful information to PR patients who do smoke as an extra incentive to give up.
• The intervals between flare ups were smaller in those who progressed than those who did not. Sadly (for me), the intervals between my flare ups can be really short – though they seem to be getting longer since I’ve been following my new regime.
• Anti-CCP (ti-cyclic citrullinated peptide antibody) – was a big indicator and seemed to be very significant. I can’t remember the figures here, but high levels of Anti-CCP seemed to indicate that people were more likely to progress to RA than those who did not have any or had lower levels.

As Prof Emery said – if we can understand better who is more likely to develop RA, then we can intervene early with treatment in order to perhaps prevent RA developing and joint damage happening in those people.

As soon as I got home, I went to look at my last lot of blood tests to see what mine showed. I couldn’t see whether or not they had tested for Anti-CCP, but on the letter to my GP after my appointment, it said under diagnosis that my CCP antibodies were negative, so they must have tested me for it at some point. I’m not sure how recently that was.

All the presentations were very interesting, but it is a passing comment that Prof Emery made that also piqued my interest from a personal perspective. Just towards the end of the session, one woman in the audience told us how starting to exercise – first by doing swimming and then tai chi – had made a huge difference to her life. Prof Emery responded to this by saying that the immunology of exercise was very interesting and that exercise could make a difference to your immune system, and that further research was needed, but that he believed that it could be an important therapy for RA, possibly improving the immune response.

It made me remember my own experience earlier this year at the bootcamp – how six days of intensive exercise did not exacerbate any pain or flares, but actually made my flare disappear altogether (after a six month almost permanent flare). And it also reinforces my belief that my regular yoga practice and exercise regime (almost daily cycling, plus zumba classes twice a week, sporadic pilates classes and daily home yoga practice) is probably as crucial to my current and future health as any drugs I might be taking.

So, what conclusions can I draw from what I heard today? Well, I’m definitely incredibly happy to know that at least someone finds PR interesting enough to study. However, it’s not likely to make an immediate impact on me or other PR sufferers.

I truly do believe, however, that taking care of my health holistically could be the key (in my case) to managing my symptoms and helping my immune response right itself. In me, this means following my current diet regime, doing lots of stress management (yoga, meditation, exercise), continuing to exercise (not just for the happy and stress-busting impact, but also for the immune system too, as well as helping keep me mobile, supple and build up strength), and managing my energy – resting BEFORE I need to and not overdoing it. Since I have been stricter about this holistic approach to my health, I have had more energy (I am even able to work a full 7 hour day, which would have been unheard of this time last year), fewer severe flares, and more pain-free days. Long may it continue.

Thanks for reading and thanks to the Leeds Musculoskeletal Biomedical Research Unit for having me along today. I apologise if there are any inaccuracies in the blog – I was writing as quickly as I could during the presentations, and so it’s highly possibly that I misunderstood or misinterpreted something!