Dreading night time

Hi I have just started treatment and am taking methotrexate 15mg (second week) along with hydroxychloroquine and Buprenorphine 5mg patch. I am getting pain in my knees shoulders etc. I am coping during the day. However night time is a different story the pain in my knees is unbearable waking me throughout the night and walking in particular is getting very difficult yet the next day i can walk fairly well. I am so tired and finding it hard to cope because of lack of sleep. I only had the patches last week but they have made no difference. I am praying the tablets will work eventually but how do you cope in the meantime?

12 Replies

  • It's a difficult time waiting for the meds to do their work isn't it? They will be of course, hopefully anyway, but you're not feeling the benefit just yet. If you're not sleeping well your body won't be able to rest & so with the pain you'll be tensing which will exacerbate the situation but I'm teaching my "grandfather" to suck eggs here aren't I lol?!!! I'd see if your GP could prescribe something to see you over this period of the meds not relieving the pain. I have amitriptylene to hand when having a flare as just 1 10mg tablet relieves the problem of tensing through pain & so helps me sleep. Used this way as a muscle relaxant seems to work for me but your GP may have other options for you.

  • Thank you for your reply which has reminded me that I have some diazepam which I used to take before the methotrexate which helped me sleep but I am not sure if these are ok to take with my other meds so I might check this out and take some tonight to at least get one nights sleep. I have read it can take around 6 weeks for meds to work is this right?

  • Sorry for saying this but if I was you I wouldn't self med. I don't know if they would mix so best think to put up with it for tonight & seek help tomorrow from a professional. I take mine with the ok of my GP who prescribed them & in no way would consider taking them for sleep otherwise & only when having a flare. I've had RD 6 years now & have a good idea of the signs & what my body's telling me.

    The general consensus seems to be it can take up to 12 weeks for MTX to work, HCQ didn't take as long for me but it was my first DMARD so guess that was why though didn't know as much about how I reacted to my meds then, or simply don't remember which is more likely!!

    Hope this all helps & sorry if it's not what you wanted to hear. :(

  • Hi again and thanks it is sound advice and it has helped. I did Google it and found a warning about mixing some of the drugs I had without GP advice so I had decided not to take it. 12 weeks seems ages but in fact 2 have already gone so I am getting there and if I am lucky it might be before. I will have some warm milk and honey tonight instead! Hope you have a good night and thank you x

  • Good, good, think that's the safest thing & more yummy too!!! Yes, hopefully you'll react quicker to your meds, it is completely possible but the drug companies have to give an idea of expected reaction periods for their drugs & this is the one for MTX.

    Thank you for your kind wishes but fear I won't as it's my MTX day today & fell deeply asleep after a spot of lunch so will probably now be awake til silly o'clock, damn!! :{

  • I remember that bit, with joints throbbing all night and hardly being able to cope with the pressure of a sheet. It was 9 weeks for me before the MTX really kicked in, and a very long nine weeks it was. Use warm wheat pillows to help support your knees and sooth them, and any other comforting things that will help you feel as relaxed as possible. I also found that a body pillow behind my back can help as stopped me moving around as much and waking myself up. And during the day try to do things like calf stretches so that you don't cramp up at night. It's horrid, so much sympathy.

  • Thank you, I will try your suggestions and it is good to hear from other people who have experienced it and it has got better as I was starting to think it would be with me forever.

  • I had the same problem. I only had to slightly move my knees and the pain was excruciating. I did a bit of research on leg raising pillows and found one on Amazon. After reading all the reviews, there was one that stood out because the it mentioned the same problem and more. So I bought one and slept through every night since. It is a large blue covered memory foam pillow and costs around £60 - but for me it was worth every penny, as I hadn't had a good nights sleep in months, plus also solved my swollen ankles. Hope you get some relief soon.

  • Thanks I am happy to hear this helped you, I just looked does the Contour Memory Foam Leg Raise Cushion ring a bell it is 59.99 on Amazon and has a royal blue cover on it?

  • Yes, that is the one. I take mine everywhere I stay. I did try lots of alternative ideas like pillow between the legs, pads and knee sleep strapping but none of these helped. As long as you are happy sleeping on your back it's fine. I also found a blow up version with one side that has like a towelling finish so that I can take abroad - amazon again around £17 + del? White but a little discoloured , but hey, if it does the job does it matter!

    You can also turn the blue one round and hang you legs over he other way if you want it higher, but may need a cushion on it for more comfort. Do read the reviews on amazon. I just know it works for me. Hope you get some relief soon as I know it is so draining when you are sleep deprived through pain.

  • Hi iainee

    I too remember those awful nights, awake most of the night and just waiting till I could take some painkiller. Think we notice the pain a lot more at night cos we can distract ourselves better in the daytime.

    After a month of that and feeling dreadful, rheumy gave me a steroid injection. That night I had my first blissful nights sleep! Have you had any steroid to help you through this bit?

    Apart from heat pads / ice packs etc, my best buy has been my memory foam mattress topper......it is just heaven.

    Try and stay positive, it will get better x

  • Thanks everyone I will look at your suggestions and get buying. I had one steroid injection in my shoulder when I was first diagnosed but seeing the doctor week tomorrow so if no better will ask again. I did smile to myself today though as once upon a time I was shopping online for lovely shoes etc here I am now trawling the sites for things to make me comfortable with such a great interest!!

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