Methotrexate for lupus

[Flows]

Hi all has anyone had experience with methotrexate for lupus as current medication not great at the moment. Did it help? Any side affects any info would be great. Thank you x

[Tiggywoos]

hey lovely

I’ve been given choice of MTX or mycophenolate so I’ll be interested to hear whar replies you get . I bet you’ll get a good response as MTX widely used 👍

I’m guessing mepacrin didn’t do anything for you either ? So sorry to hear your symptoms aren’t under control . Sending a gentle squeeze xx

[Flows in reply to Tiggywoos]

Ahhh thank you Tiggywoods. Same back to you. I've been on mycophenolate for quite a few years no side affects at all but hasn't help at all with joint pain or swelling and was originally prescribed to stop my body attacking my liver. Mepcarine did work for joints and swelling but went really yellow and really bad itchy skin so dose was lowered but now not effective at a lower dose. So trying something new possibly. Hope you are okay and meds help you.

[Tiggywoos in reply to Flows]

Ah you’re so kind to reply and interesting as my liver function is always above range so I’m leaning more towards myco. Keep us posted on how you get on with MTx as very good for joints I think . xxx

[Flows in reply to Tiggywoos]

Will do and vise versa. Takecare x

[Teanau22]

Hi I was on methotrexate injections, unfortunately my liver levels would not stabilise and my lupus flares kept happening. I was then put on mycophenolate where liver is now fine, but flares persisted, so now on belinumab infusions, mycophenolate , hydrcloxiquerine, steriods. And flares seem to be under control. Hope the change of medication works for you, good luck.

[Flows in reply to Teanau22]

Thank you for replying it's good to know

[Murp17]

Hi

I take methotrexate and have done for almost 2 years it has helped me a lot and thankfully the only side effects I’ve had is mouth ulcers now and again nothing too major too be honest. I hope this helps and you feel better soon

[Flows in reply to Murp17]

Thank you glad it's helped you. Fingers crossed

[Kath1]

Hi I'm on methotrexate, it hasn't stopped my symptoms/flares altogether but it has reduced the frequency and severity significantly. Gone are the flares when I can't get out of bed. Side affects can vary with each person, you could have none at all. I feel a little off the next day so I take it on a Tue as I work 1/2 day on Wednesday so I can rest if I need to. You will probably start with tablets so my advice is to have a nice dinner, take the tablets and go to bed. You will have regular blood tests to keep an eye on you. And folic acid can be prescribed to help with any side affects. It can take a few weeks to kick in and my dosage was adjusted many times before settling on 15mg. I get mouth ulcers occasionally and it does make you more susceptable to viruses. It can take a few tries to get balanced out so give it time. It is worth a try. I hope it goes well for you!

[Flows in reply to Kath1]

Thank you for replying

[Bakbre]

I was struggling really badly and my medication at the time wasn’t working so my consultant decided to try me on Methotrexate. I was put on tablets and for the next 2/3 weeks I spent all my time in the bathroom, usually with a bowl on my knee with extreme sickness/diarrhoea. It was then decided to put me on the epi pen injections but unfortunately I reacted just the same. My symptoms were really bad and after 2 months they reluctantly took me off it.

I have spoken to other people who said it had worked for them but unfortunately it didn’t work for me.

I wish you good luck and hope you feel better soon.

[Flows in reply to Bakbre]

Thank you so much and for replying x

[HazelW]

I was on methotrexate for years, had no side effects and it controlled my Lupus really well. However, in May this year I was diagnosed with Breast Cancer and, after a mastectomy was taken off the methotrexate so I could start chemo. Sadly I had a bad reaction to the chemo and ended up in ICU for a couple of weeks. So it was decided chemo wasn't for me and I'm starting radiotherapy today. The trouble is, having stopped the methotrexate my RA is giving me serious pain. My GP has suggested I contact rheumatology and see if I can go back on methotrexate as I'm not having chemo. Fingers crossed 🤞 As you can tell, I'm a big fan of methotrexate!!

[Flows in reply to HazelW]

I'm so sorry to hear. I hope u are okay. Thank you for taking the time to reply. Take care x

[HazelW in reply to Flows]

No probs. It's good to have something to distract me from the RT for a while 😍

[Jerg]

I have been on this for a number of years now and found it very helpful no obvious side effects.

[Flows in reply to Jerg]

That's good to hear

[Guatmom]

I tried methotrexate, but the side effects were too much for me to continue. I had major nausea and vomiting the two days following the pills and just not feeling great for another day or two. It did help my joint pain some, but wasn’t worth the two or three days I needed to stay home a week. For some people it definitely helps. My doctor didn’t offer me taking the injectable instead of the oral.

[Flows in reply to Guatmom]

Thank you 4 replying