Monthly Archives: November 2016

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.

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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