Methotrexate

[Ophelia1]

Hello all - I received a lupus diagnosis two years ago. I've tried various meds, including hydroxychloroquine, but experienced side effects which caused me to stop taking them. I'm very fatigued at the moment and am experiencing other symptoms, including headaches, mouth ulcers, raynauds and joint pain. Today I saw my rheumatologist and she suggested that I try methotrexate. Has anyone benefitted from this drug? I'd welcome input from others who have taken this medication.

[HazelW]

Yes Ophelia1. I started on hydroxy but it didn't help me at all. I have now been on Methotrexate for several years and I swear by it. It has really helped to control my symptoms. Obviously it doesn't work for everybody but it's definitely worth a try and I wish you luck !

[Ophelia1 in reply to HazelW]

Hi HazelW - Many thanks for your response. I'm really hoping that it helps me as it has helped you.

[Sara_A]

Hi, I have tried several others and have not got on with them for other reasons. I am on hydroxychloroquine have been for many yrs. I take methotrexate 25mg injection weekly and this has definitely helped with my joints as b4 that I used to have to wear splints on my wrists daily and since increasing to this dose I've hardly had to wear them at all. I am also on 10mgs steroids daily so I'm not sure if this is a big factor as I know if I drop to 5mgs my joints start to flare instantly.But I'd definitely say I've improved with the methotrexate and I'd say its worth a try for you. I know it's scary each time we try any of these drugs but we have to think about our quality of life too.

Good luck and I hope it goes well for you too 🤞

[Ophelia1 in reply to Sara_A]

Many thanks Sara_A - I do hope it works for me as it has worked for you.

[Krazykat26]

Yes Ophelia 🤗I've been on Methotrexate since 2019. It's been life changing for me as I now have some control over my many skin rashes..I have more energy too!! I'm on 17.5mgs now..beauty of it is that u take it once a week!! I would suggest that u take it on a day of the week where u don't have much to do..I take mine on Sunday. I did have side effect on the first couple of doses..mild headache n a bit of visual disturbance n mild numbness n tingling in my left hand. Only lasted a couple of hours though n I've been fine on it since.

Your rheumy will prescribe folic acid to take every day EXCEPT the day u take the mtx.

Some people have reported gastric problems n been changed from oral to injectable form of the drug.

You will have to have regular blood tests..might be every two weeks at first n then once they know you're ok on it it will be monthly blood test.

Best of luck 🍀I hope it helps you 💜🌈😽😽xx

[Ophelia1 in reply to Krazykat26]

Hi Krazykat 26 - Thanks so much for your reply. This is very encouraging. Best wishes.

[marypw]

Hi Ophelia, methotrexate seems to be the fashion amongst rheumies. I'm in the same place as you - supposed to be starting it in a few weeks time, just at 7.5mg.I'm not wildly enthusiastic, but hydroxychloroquine really doesn't do much for my symptoms, although my antibody levels are now normal.

Hope it helps you xx

[Ophelia1 in reply to marypw]

Hi Marypw - Hydroxychloroquine did nothing for me. I am finding the exhaustion really difficult to cope with and hope that the methotrexate helps to alleviate it. Work is impossible for me right now due to the symptoms and fatigue. I hope it works for you too.

[JenniferW]

Hi OpheliaI started which Hydroxy and they added methotrexate a little while after, it stopped me from pulling tendons any more. I get side effects, mainly around my stomach, but I would recommend you give it a go.

[Ophelia1 in reply to JenniferW]

Hi jenniferW - Many thanks for your reply. I'm definitely keen to give this a go. all the best.

[BK47 in reply to JenniferW]

Can I ask you about tendon damage. I’m really upset at the moment as I have partially torn a calf muscle and am in agony. The rheumy didn’t seem to think it was anything to do with my lupus. But I am really struggling with muscle pain and walking is getting so painful and difficult. How did your tendon problems get sorted?

[JenniferW in reply to BK47]

I kept pulling tendons and mentioned it when I went for a review of the thyroid medication I had started taking about four months earlier, also complaining about fatigue despite the good thyroid tests. That's how I got diagnosed.

I started on hydroxy and was still straining tendons/ligaments, shoulder, wrist, back, knees. Then they diagnosed me with rheumatoid arthritis as well as lupus and added methotrexate. That's when I stopped pulling things. I still occasionally strain something when I am in flare up but naproxen for a few days along with heat fixes it.

I don't know if a torn muscle is directly related to the lupus, but if the tendons/ligaments are involved (which is a lot of the calf) then it is.

[BK47 in reply to JenniferW]

Thank you for replying. I’ve begged my dr to review my medication because I’m convinced one of them is causing my muscle/tendon problems. They just seem to seize up or worse still, snap, without any accidental cause. It takes ages to heal and my mobility is suffering.