Alternative to methotrexate

[Ophelia1]

Hello all - I have lupus and was prescribed methotrexate by my rheumatologist last year. I took it for 6 months, but it really disagreed with me, so I stopped taking it . however, I am now feeling really unwell. I'm horribly fatigued, finding it difficult to force myself to exercise, though I know I should. Brain fog, mouth issues, joint pain, freezing all of the time (I'm sitting in a sleeping bag as I type this) , raynauds, headaches etc etc etc. I feel that I really need some sort of pharmacological assistance because everything is impacted now, both work and home life. Does anyone know of any good alternative to methotrexate?

[Mifford]

The rheumatology team where I am have a lupus helpline to discuss issues with the nurses. If you have the same I would be inclined to give them a call and advise how you are feeling at the moment - sometimes mine check my bloods but not always. They usually discuss it with the consultant and get me in for a steroid injection as in my case it usually indicates a flare. If they then think you need to discuss ongoing meds with your consultant they can book you an early appointment to go over the options. If this isn’t available then I’d be inclined to give your consultants secretary a call and ask what you should do - it could be they will book you a phone consult or ask you to email with your current symptoms.

Outside of that there are a number of immunosuppressant treatments that they can try depending on which you have already tried. I’ve had so many that I can’t take I can’t remember which order they came in but I think I was tried on micophenalate after methotrexate. It had very different side effects for me and I had to stop but I know lots of people who have got on really well with it.

I hope that helps and that you start to feel some improvement soon x

[Ophelia1 in reply to Mifford]

Hi Mifford - Many thanks for your advice. I'll definitely ask about micophenalate. i have a face to face appointment with my rheumatologist in May, so I'll ask her then. Take care.

[Butt3rf1y]

Maybe hydroxichlorquine with vitamins but ask doctor for a better idea

[ShannonB]

It doesn’t suit everyone but I had ten years of help from mycophenolate—it was my miracle drug for such a long time. Like many of these drugs it eventually stopped helping me. But it may be worth a try. Thinking of you.

[Tonk]

Hello Ophelia1

It is very hit and miss in the early post diagnosis period.

Everybody who has lupus has a different journey although, there are often reoccurring themes.

I am sorry that you're still going through the more difficult stages of your journey. Only those of us with Lupus can understand how you feel having experienced it ourselves.

I took methotrexate for about a year and had to give it up due to side effects and a lack of symptom relief. I also had my hair fall out in large clumps.

A couple of years on steroids just put weight on me which added to the aches and pains of the Lupus.

Eventually, a combination of Hydroxy chloroquine and Azathiropine kept the majority of the symptoms at a tolerable level but, these medications do have their own risks at the levels I'm taking them.

I agree that the Rheumatology Nurses Helpline at our local hospital are often a useful resource and if you have one at your hospital where you are treated, I would recommend you contact them.

Lupus UK have a wealth of information so they too are worth a call.

I hope you find a treatment that suits you soon so that you can start to have your life back.

Take care because we all care.

[purple1995]

I’m on methotrexate and am one of the few lucky ones who has had no problems, but I know someone who gets it intravenously as they had horrible side effects from the tablets so could be worth discussing with your rheumatologist. Also did you take folic acid with your methotrexate, as this is supposed to help with side effects? I am also on hydroxychloriquine and have had no problems!

[Maddymay65]

Hi Ophelia 1

I was on methotrexate for a while and I have also taken azothiaprine. I have had lupus for 18 years in Summer 2021 I was moved onto Mycophenolate 500mg three times a day and apart from an initial upset stomach I now find it really helps . Maybe it would help you .

Does your Rheumatologist know how ill you are feeling now you have stopped taking it? Might be worth hitting down all these symptoms and seeing if you can get a telephone consult if not with them do you have a nurse specialist at your clinic ? asap.

Do hope this is of some help. Please feel free to message again . Rest up and hope you feel better M x

[Autolupus]

I was on methotrexate for scleritis and it really didn't agree with me - my liver function results were rising and I just felt rubbish all the time. I was switched to mycophenalate and am tolerating it much better. We all respond differently to the various drugs so there will be one that will be right for you but you need to discuss with your consultant. Hope things get better for you.