Methotrexate Update – Rachel’s Blog

Rachel - The Hibbs Lupus Trust

I am writing this after a very tough few months. I said I’d keep everyone updated how I was getting on with my treatment but my blog has been lacking and I am sorry for that. I’ve not had a proper flare in a long time and it seems that lupus just wanted to let me know who was boss again for a while. Perhaps it was my body’s way of saying ‘chill the hell out woman and rest’ or maybe it would have happened anyway but I can’t really remember anything about those six weeks. They’re shrouded in the biggest brain fog and I wasn’t able to think straight let alone write in coherent sentences.

But the best thing is that it is over and I’m feeling pretty good about things.

I have just done my 15th methotrexate injection. I was told to wait for 8-12 weeks before I started to see any effects and I’m so pleased that things are looking up. I’m a bit faster, a bit sparkier and a bit less fuzzy around the edges!

Methotrexate was my kryptonite but I am now having to admit that perhaps my doctors were right all along. I hate that!

While they may have been right, they’re not magic and I still get tired, I still struggle with mobility and I still feel pain but it’s more manageable. And manageable is far better than where it has been.

Over the next few months we’ll need to be making a decision whether to change my dose or if I can keep pootling along. But I’m not a planner and, right now, I’m just enjoying being able to go with the flow a bit, spend time with my family, go back to work, lose some of the pesky steroid weight and just be me.

I listened to a presentation about lupus by my doctor a few months ago and he discussed how ‘remission’ means different things to different people. For many, it’s feeling well without any medication. For me, it’s feeling better despite being on medication. Perhaps one day I’ll be brave enough to hope for the former.

Rachel is taking over our social media accounts to share her lupus journey as she starts methotrexate injections. Posts will be signed -RW.

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2 Comments

  1. Kim Seal on February 6, 2017 at 16:42

    I’m on methotrexate, been on this a few years and it’s been helpful. I’ve used both injection and tablet form.. I used injection when my stomach got too sore from the tablets, and it really helped. Eventually going back to tablet form after a year or so. I currently have big issues with sjogrens, a paralysed vocal cord and throat , neck muscle weakness along with acid reflux and a hiatus hernia. My voice is severely affected as a result as is food swallowing. Despite a severe diet cutting all acids, speech therapy and sleeping raised upright and pantoprazole, the acid continues to cause damage. I therefore requested to return to methotrexate injections to bipass my stomach in order to help with my issues. At least I could take one drug away from my stomach. However I have been told that the hospital is no longer allowed to issue methotrexate via injection, in any circumstances. . I did not know if this was a nationwide issue. Yours is the first post I’ve seen where someone is still using injections. Resorting back to injections would have made a massive difference to me, Do some areas do this and others refuse to fund it? I’m not sure why they stopped using it. P.S. Methotrexate didn’t cause this please don’t worry. Lupus is a fickle thing.

  2. Leanne howis on February 10, 2017 at 16:44

    I have recently started methotrexate and agree that I was not expecting to see a difference yet but have noticed changes already. I am still not my old self but am definitely not as bad as I have been so although I had reservations about the medication I am so glad I gave it a try. Good luck xoxo

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