lupus & methotrexate injections: Hi I was diagnosed... - LUPUS UK

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lupus & methotrexate injections

Pea_m profile image
10 Replies

Hi I was diagnosed with lupus around 2 years ago I’ve been on plaquenil 200mg morning and night since and prednisone when I have flares but I’ve been in pain since October so my rhumatologist has decided to start me on methotrexate injections so I’m now on plaquenil 200mg in morning and night 20mg prednisone and 15mg methotrexate injections… is anyone on the same combination? I started the injections today and literally within half hour I felt extremely tired and this evening I’ve got all pains in my arms and legs I feel like I have the flu, has anyone experienced this ? Thanks so much for reading and if anyone could help.

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MADDIE73 profile image
MADDIE73

HI, it's the first time I have heard of injections do they help?

Pea_m profile image
Pea_m in reply toMADDIE73

Hello, I’ve only just started the injections yesterday so I can’t really say as they take a while to start being effective. I’ll get back to you in a few weeks and let you know 🙂

Hiya yes I find a big difference with the injections methotrexate 15mg, I have just increased it to 20mg. I do mine in the evening about 8pm and relaxing watching TV. I do get the tiredness and pain going through and down my legs once I have done the injection but then I go to bed and that is the only real side affect. I did have slight abdominal pain and dodgy tummy the first time but it's worth the benefits. I hope that they really help you. Cx 💜

Pea_m profile image
Pea_m in reply toRiselikeaphoenix_123

Hello,

Thank you for your reply. How long have you been taking the injections for ? How long did they take to work for you? Doctor told me around 8 weeks ? A few people have said they take it in the night time as it’s easy to sleep after and not feel the side effects as much… but as yesterday it was my first injection the nurse came out to do it, until I learn to inject myself in the next few weeks.. and then I think I will take them on the evening. But I literally felt like I’d been hit by a bus last night all flu like pains in my arms and legs I felt dreadful a bit of nauseas too but mostly tiredness and the pain. Thank you for your reply 💛 xx

MADDIE73 profile image
MADDIE73 in reply toRiselikeaphoenix_123

Thanks for your reply, I am not on them yet and not been offered them , however I am still under the investigation stage so might be in the future 😉

Mimi1900 profile image
Mimi1900

The 20mg prednisone is really high and more dangerous in the long run than methotrexate. I think you should talk with your doctor about increasing the methotrexate (it increased by 2.5 mg with blood work to check for issue in a month). The top dose is 25mg as long as there are no liver or blood problems. You should be taking a daily folic acid is vitamin prescribed by the doctor to offset any side effects from the methotrexate.

The SLE recommendations in the USA are to eliminated the prednisone if at all possible otherwise it should be less than 5mg a day.

Pea_m profile image
Pea_m in reply toMimi1900

I just looked the doctor prescribed me 10mg of folic acid once a week 48hours after injection

Riselikeaphoenix_123 profile image
Riselikeaphoenix_123 in reply toMimi1900

Hiya, I was only prescribed one folic acid tablet a week! But not on the day of the injection. Do you think that I should take more and question it? Any thoughts would be helpful. Cxx 😊💜

Pea_m profile image
Pea_m in reply toRiselikeaphoenix_123

Hi, how much were you prescribed ? I’m not sure as I’ve only just started the injections, I was told 10mg once a week 48hours after the injection so …. But maybe the lady who replied may know.. xxx good luck

Pea_m profile image
Pea_m

hi, thanks for your reply. Well I’m currently taking 200mg of plaquenil and 200mg in morning and 200 at night plus the 15mg of methotrexate every Thursday, 20mg of prednisone daily for one month then 15mg the second month and then 10 on month three. And the folic acid the doctor told me to only take once 48hours after injection. I felt pretty rough after the injection yesterday flu like pains and general tiredness. I have really bad left arm pain today but I guess it’s the side effects… I will definitely talk to the doctor about the prednisone levels I didn’t know it was dangerous I trusted she knew what she was doing …, thank you !

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