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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!

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.

handstand

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!

 

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!

Reporting back on my gluten free experiment

Reporting Back

The last time I blogged back in April, I was about to give up gluten, cautiously optimistic that it might improve the severity or duration of my flares. For about two months, I was practically pain free. I had continuous runs of days with no pain or flares or fatigue at all. I even had a full 18 day pain free run – the longest that I can remember for quite a while. I had good energy and when I did flare, it was short lived and generally mild.

I was strict with the no-gluten thing, and gleefully filled out my pain record app with 0 pain and 0 joints flaring more times than I had done since I’d started keeping records in September last year. I thought I had it cracked. Finally, after 10 years of not knowing what causes my flare ups, I thought I might have worked out a cause. And so that’s what I cautiously told people, that I may have cracked it. It felt like a major achievement. A eureka moment. A miracle. If only I’d known this years ago, I said.

And then… the flares resumed. Sometime, around mid June, my joints started complaining again. As before, there appeared to be no pattern. It felt as though my body was playing games with me. Flaring in a toe one day, my elbow the next, hopping from joint to joint, varying in its severity and length of time in each joint. I woke up every day, trying to guess where it would land today, and wondering how bad it was going to be. It felt like the arthritis was taunting me. “You thought I’d gone away” it seemed to say “but really, I was just sleeping for a while. Taking a rest. Now, where shall I hang out today? Shoulder? Maybe. Little Finger. No. Too insignificant. Wrist? Yes, why not? Not been there in a few days.” 

Still, there were pain-free days – sometimes as many as three in a row. But over the last month, there have only been four of those, and again the balance is tipped again, with pain and flares being the norm, rather than no-pain. 

Yet, I’ve continued to the no gluten diet. And it’s been a pretty healthy way to live overall. I’ve eaten way more fresh fruit and vegetables than I ever did when I did eat gluten, and avoided lots of sugary treats. I’ve got pretty inventive and imaginative in the kitchen, and have enjoyed making sugar-free, gluten free and vegan treats such as courgette and apple muffins, or brazil nut cookies from my Honestly Healthy cookbook.

So, here’s what I’ve concluded of my gluten free experiment.

  • My energy and fatigue has certainly still been better OFF the gluten than on it, even once the flares returned.
  • Eating out as a non-meat eating, dairy avoiding gluten free person is a nightmare and minefield.
  • I am using a lot of almond flour and dates in home-made treats
  • I’m eating WAY more salads, vegetables and fruit than I ever used to, and this is probably a Good Thing
  • I’m eating a much more varied diet too – eating lots of different salads for lunch instead of resorting to cheese on toast, or a cheese sandwich
  • Store-bought gluten free bread is rubbish and not really a real replacement for a decent healthy wholemeal, granary loaf.
  • Eating on the go is almost impossible. I’ve had to be prepared and bring lunches with me whenever I can, and things to snack on.
  • I’ve enjoyed being prepared – making gluten free pancakes on a Sunday to last the week, or sugar-free snacks to take to work (I have a new job).
  • I have NO idea whether my two pain free months which coincided with giving up gluten were a complete co-incidence or directly related to the giving up of gluten

So, I’ve decided to keep up the gluten free diet for a while longer. I think it’s better for me, I think it’s good for my energy, and if it isn’t the only cause of my flare ups, it could well still be a contributory factor. As long as I can eat a healthy, varied and balanced diet without gluten, I think I’ll continue.

I am going back to the rheumatologist at the end of the week. The last blood tests were clear, indicating that I’ve not yet progressed to rheumatoid arthritis. Not sure whether to try a different lot of ‘disease-modifying drugs’ (I’m still on hydroxychloraquine) in the hope that they will silence the flare ups more permanently. The trouble is, these drugs come with so many side effects (plus regular blood tests) that I am scared to try them. I spend so much time and energy not putting chemicals and horrible stuff into my body by eating healthily, do I really want to take a rather toxic drug? If it ‘cures’ the flare ups, will it be worth it? I can’t even be sure it’ll definitely work. So, I’ll probably put it off for yet another year, or until I can’t bear the flares any longer.

And the truth is, while the pain is a pain, I’m still functioning. I’m still working. I’m still pretty happy. I feel mostly good. I’ve faced the disappointment of the returning flares, and grieved for the pain-free days. I’ve had to re-realise that I can’t control my flares or my arthritis – no matter how hard I might try or how much I want to. And so if I have to live with it, I’d rather do all I can to stay well and healthy with it. 

Going gluten free

On the palindromic rheumatism facebook group, there are often posts from people wondering whether there is any link between diet and their symptoms. I’ve written about this before, and have never really been convinced that my flare ups relate to any particular food or food groups. I tried keeping a food diary, but there was no conclusive results in two months and so I just stopped doing it as it got really tedious! Eighteen months ago I drastically cut down on sugar, in the hope that it could be a culprit. It sort of helped my energy levels a little, but I didn’t think that it was a cause of any flares.

Yet on the facebook group, a number of people DO seem to feel that some foods do trigger their symptoms, though the foods themselves are not the same for everyone. Variously, they single out gluten, sugar, MSG, artificial sweeteners, tomatoes, and processed foods. Meanwhile, plenty of well-meaning people continue to advise me to give up various different foods, convinced that they are the cause of arthritic symptoms.  There also seem to be lots of people online talking about following an alkaline diet or the ‘paleo’ diet. I’m not so sure myself. The paleo diet seems to be very meat-based and as I haven’t eaten meat since 1990, it’s not something that appeals!

One of the things that comes up a LOT when people talk about diet and arthritis is avoiding gluten. But I’ve been quite resistant to giving it up. After all, gluten is in lots of foods, and I do really love bread and toast and so I’ve never really given it a go. I already avoid sugar, meat, various dairy products and follow a low-GI diet as much as I can. Do I really want to cut out another food group?

And yet…

When I was at the Apples & Pears fitness bootcamp, my symptoms completely disappeared. Even the flares that had been ‘stuck’ in joints for weeks and months went away. Part of me is convinced that this is down to the exercise getting rid of all the stress that had built up in my body after a bereavement and having builders in the house. But another part of me also wonders – could it be down to the fact that my gluten intake during that week was very low? Or could it be a combination of the two?

Even more confusingly, when I got home, I flared up within 24 hours of getting back. It could have be the stress of being back in a builder-infested house. Or, it could have been the slices of toast that I had the evening I arrived home.  So, I decided to cut out gluten and see what happens.

It’s been ten days now since those slices of toast. The returning home flare-up disappeared soon afterwards, and I have had quite a few more pain-free days with only very mild flare ups in my fingers after a very long day at work. It’s too early to draw any real conclusions. I’m going to have to stick with it for a couple of months and monitor symptoms during that time. If I haven’t flared by then, I’ll try reintroducing gluten and see whether it triggers anything.

Justin, my partner, reflected that this whole process was a win/win situation. Either gluten triggers my symptoms – in which case, I can control (to some extent) my condition by avoiding it. OR it doesn’t. In which case I can have toast and bread again! 🙂 Either way I win.

I am using rheumatrack, an app, to monitor my symptoms, so I will have something concrete to refer to at the end of the experiment.

So far, I haven’t found it too tricky, but I imagine it will get harder as time goes on. I know I’m going to have to be more prepared with my lunches and bringing food to events with me. Any suggestions, advice or good gluten free recipes welcome!

I promise to report back.

 

 

How far I’ve come

I’m flaring at the moment quite badly. In fact, it’s probably the worst overall flare I’ve had for quite a considerable length of time. Years I think. I’m in some sort of pain constantly. The elbow flare which has been in my elbow since September, is limiting my arm mobility a little (I suspect it’s now in the tendons), and the shoulder of the same arm is restricting other movements (pulling up my trousers being the most painful action). They’ve been pretty bad for a couple of weeks now, but in the past week, my wrists, all my fingers, and the rest of my hands all decided to join the party. This has meant that restful sleep is becoming harder and harder as the cramping in the hands during the night wakes me or causes painful pins and needles. My knees occasionally give me twinges too, just to let me know that things could still get worse!

It’s a pain – quite literally – and yet, I’ve also felt quite happy too. It’s strange, but this flare has been a good opportunity to assess how far I’ve come since I was diagnosed and how different I am at dealing with this illness, the pain, as well as the restrictions and unpredictability.

I now meditate daily. I have been doing this for nearly a year. Among other things, it is giving me an opportunity to listen to my thoughts and to tackle some of the unhelpful ones. I realise that talking about ‘fighting’ this flare is not helpful. It’s combative and aggressive, and the arthritis is aggressive enough without getting into a fight! Instead, I’ve reframed this to thinking about ‘riding it out’ instead. Bearing with it, and accepting it. Going with the flow or surfing it even.

My meditation practice and work around compassion and self-compassion that I’ve been doing has meant that I’ve been kinder to myself. I used to get frustrated by what I couldn’t do, and angry and maybe even try and do too much or overdo it. Now, I am able to recognise the signs of overdoing it, and I’ve been ‘indulging’ in plenty of different pleasant activities to help me feel better psychologically. I am suffering enough, why make myself suffer more by feeling angry at myself, frustrated or punishing myself by trying to do things that will cause me more pain? I have nothing to prove to myself.

I’ve been much more objective about my pain and my flares. My partner says that I am less emotional about it. Which I suppose is the same thing. I’m not identifying with it too much. It has an identity, my disease, but it’s almost as if it is a separate entity to me. It has its own timetable, it will do what it does, I can only live alongside it. Again, my meditation practice has been essential for helping me to develop this way of thinking and to put it into practice.

I’ve not only been able to accept help from friends, (and ask for it), but I’ve actually felt pleased about saying yes. In times past, I would have resented the fact that I needed help, and either refused it, or accepted it and felt very guilty and like a failure. Now I realise that if someone offers to help it’s because they want to, and therefore by accepting it, I’m allowing them to do something positive – which is good for us both!

I am still exercising. Doing what I can, and staying within my limits. If I’m going to be in pain ANYWAY, then why not be in pain doing something that I love! Just so long as it isn’t going to make me worse. So I have been going to zumba (but just not using my arms!), cycling (I’m still safe to do this), and doing yoga or pilates almost daily. The low impact exercises are great because there is a lot of muscle tension around the joints and the flares, so these practices allow me to relax and stretch out. When there are things I can’t do because I’m restricted or they hurt too much, I just don’t do it. But the rest of my body is definitely benefiting from being allowed to do some sort of activity. And these activities continue to give me spoons, rather than using up spoons I don’t have.

I don’t know how long I’ll be flaring for. I assume it’ll be a while. I have builders in my house. They’re not going any time soon. I assume the flares will leave sometime after they do. But I do not worry or feel anxious about the timetable of it. I have been relatively pain-free before. I will be again. That’s enough for me.

But I want to make one thing clear. Accepting my flares and my pain is not the same as giving up! I’m throwing everything I can to try and help ease the pain and shorten the flare. I’ve bought some castor oil to try, some Epsom salts to bathe in, some devil’s claw gel to rub in. I’m upping my daily medication dose. I’m using hot water bottles and icepacks. Sometimes simultaneously on different parts of the body! I don’t have expectations about whether anything will work. But some things give me at least a little relief and I think it’s worth a try anyway. I’m vaguely considering having my friend who has got a cold sneeze on me, because if my immune system has to start fighting that, then perhaps it’ll stop attacking itself! Vaguely considering it. Not seriously! But when you’re in pain and have restricted mobility, sometimes you’ll try almost anything!!!!

So yes, this flare is a pain. But it’s a world away from my experiences before my meditation practice. And a good reminder to keep it up, no matter what life decides to throw at me.