I am currently taking methotrexate but have found... - LUPUS UK

LUPUS UK

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I am currently taking methotrexate but have found the only drug that actually works for my symptoms is 25mg of prednisone

Deary profile image
9 Replies

Has anyone took this long term and what side affects have you experienced?

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Deary profile image
Deary
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9 Replies
cathie profile image
cathie

Pred isn't great, and it can be difficult to come off it. 10 mg daily over 3 months has caused my blood sugar levels to more than double. I have type 2 diabetes, but assume it'd have a similar impact even if you haven't. It can cause thinning of skin and easier bruising.

My GP described it as a sticking plaster. Maybe you can take it short term but after a month or so it does become harder to come off it and sudden withdrawal can make you feel very I'll. Hope this helps.

misty14 profile image
misty14

Hi Deary

Sadly for you 25mg steroids is too high a dose to take long term hence you being on Methotrexate. How long have you been on the Metho?. It can take 2-3 months to start to work. I'm stuck on 20 mg steroids at the mo and worrying about them thinning my bones and side effects like diabetes, etc. trouble is they are so effective!. It's a constant juggle!

Hope I've helped?.X

Deary profile image
Deary in reply to misty14

Hi Misty 14,

I've been on Methotreate for four weeks. I was led to believe that I should start to notice some improvement after a few weeks but symptoms are getting worse.

misty14 profile image
misty14 in reply to Deary

Hi Deary

4 weeks is too early for Metho to be working. Could you contact your Consultant to explain how your symptoms are worsening?. They can give a steroid injection to tide you over before the Metho kicks in .I've asked for an appt with mine as I'm stuck on 20 mg steroids trying to recover from a big flare, it's hard!.This forum is brill as we all understand these difficulties!. Good luckX

candyellie profile image
candyellie

Hi Deary,

I am in the same boat with 15mg pred the only time my symptoms ease to a reasonable level. I tapered off a week ago and have been on methotrexate for six weeks. I'm feeling pretty yuck but for all the side affects of pred mentioned above, i am sticking with it. I keep telling myself that I have enough problems without thining bones and diabetes and so far its got me through. I just keep telling myself that its early days with the methotrexate. I hope things improve for you soon. Have you been on the methotrxate for long?

gladtobeme profile image
gladtobeme

Hi im just starting methotrexate and dont feel great about it as it says no alcohol so looks like my weekends will cum to a stop with family and friend. But been on all different meds over years and well they havent worked for me. Apart from predisolone but been told carnt stay on that forever.

sylviaweller_79 profile image
sylviaweller_79

Ive been on pred since I was diagnosed 18 years ago. The dosage has gone up and down. At one time for 2 weeks I was taking 100mg a day. Not now tho, I'm on 2.5mg daily. My weight has gone up and down with the dosage too. It's not a great drug although it does help. I don't think it should be a long term solution but most doctors disagree with me. Its a personal choice I think. If your doctors say stay on taking it and you don't think its right ask about other meds.

jad12345 profile image
jad12345

I put on loads of weight with this steroid not great but if it works that's all that matters

Deary profile image
Deary

Thank you for all your replies, it is great to hear from people who know what it is like and no just a Dr opinion.

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