methotrexate advice

[Lioness12267]

hi, Im 22 and have SLE and I am currently taking hydroxychloroquine and prednisone. I just got started on methotrexate injections on Friday and I am struggling with it. I used to be on the tablet version and my body just wouldn’t tolerate it so my rheumatologist is trying me with the injections. But I am feeling so exhausted and run down, it’s like I have no energy what so ever since getting the injection. I also noticed a couple of hours after getting it, my eyesight went all blurry and I lost my peripheral vision for a while. Has anyone else experienced this? I am going through a flare currently and have a lot of pain and swelling in my joints, I’m struggling to just move around. I’ve been advised I can’t take anti-inflammatories and I can only take paracetamol which isn’t touching the edge of my pain. Can anyone recommend anything I can try to help with the joint pain and swelling? I’m just struggling without the use of anti-inflammatories such as naproxen. Thank you for any advice

[dg70]

Hi. Talk to your gp re. Joint pain. I cannot take ibuprofen or naproxen because of kidney issues. I agree paracetamol is useless with our kind of joint pain. If its day time and the pain is bad I have codeine which is prescribed. At night I hardly slept at all with pain but I am prescribed gabapentin, which is an epileptic drug, it's works so well for joint pain on me. It makes you drowsy so I only take at night and now I sleep well. There are a couple of epileptic drugs and a couple of anti depressants you can get prescribed for pain. I think there's details of them on the fibromyalgia page on nhs uk. I did start with an anti depressant for pain but it gave me awful vivid dreams so I changed to an epileptic drug. It may be a case of trying different tablets and a few gp visits. Also I have found joint cream with added hemp is brilliant, rub it on and it's great for me. Not so smelly or hot like deep heat. Heat pads are good but they don't touch my pain when it's bad. For me it's a combi of tablets, creams and rest until the worst passes. It's really tough when you have joint flare ups. Hopefully your gp can help you soon.

[Sus2372 in reply to dg70]

Hi, I found taking the methotrexate at night time really helped with any side effects.

We’re you given folic acid too? If yes make sure u take it everyday except on the day you have your methotrexate unless the GP or consultant says otherwise . Do NOT take it on the same day.

I have found that although the methotrexate doesn’t stop my flare ups it does make the length of the flare a lot shorter, which is a great think in my opinion. It also means I don’t have to take antibiotics very often now too. Just remember the good it will do when you are used to it and it’s fully working will outweigh the side effects in the early days.

I’ve been taking it over 2 years but still feel exhausted the day after I have it! It may also be worth asking your GP to do a full set of bloods including vitamins as you may be lacking vitamin D , Iron and B12 as low levels of these can also make you feel exhausted.

I really hope you feel better soon. Good luck with your treatment.

[Lioness12267 in reply to Sus2372]

I’ll need to try take it a night time to see if that helps, it’s more so the complete exhaustion that I experience the next day. I can only describe it like a really bad hangover sort of thing. Which I have a little one at home so I don’t really have the opportunity to spend the day just sleeping or sitting down which I am struggling with. I think it will be really beneficial once it gets into my system fully, because even with being on hydroxychloroquine, I was experiencing flare ups constantly. I’ve been in a flare up for about a week now with just constant pains.

I got prescribed the folic acid which I have taking alongside vitamin D everyday too. I will be getting bloods done every couple of weeks just now because of the methotrexate but I’m not sure if they are checking my iron and B12 levels but I may mention this to the GP. Thank you for your reply