Ianrussell69

Hi the pill are evil I started to inject myself and almost all the side effects went

SilentWillow in reply to Ianrussell69

Thanks! I’ll see how long I’ll have to wait before they suggest I switch

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Ianrussell69 in reply to SilentWillow

I waited 12 month but was told that if I had told them how bad it was making me they would have changed it a lot sooner

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AgedCrone in reply to SilentWillow

Don't wait.....talk to your medics now.....they can't help if they don't know you are having a hard time.

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polymy

Hi Silent willow,

I had terrible side effects from methotrexate. Gastric problems, feeling weak, fast heartbeat and generally feeling miserable. Tried the epipen variety but that was no better. Worst of all, it was doing nothing to help.

Liz.

SilentWillow in reply to polymy

Hi polymy,

I am on day three after taking and the side effects seem to have lessened a little. It would seem the results are all over the place with this medication. :/

Thank you for your reply!

Take care!

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HazelW

After trying hydroxy , which did absolutely nothing for me, I was put on to Methotrexate & it has been my lifeline. I have been taking it for 7/8 years & my GP is now hinting that I may have to come off it , albeit temporarily, & I am dreading it. I'm convinced that it has controlled my Lupus very effectively.

SilentWillow in reply to HazelW

Thanks for your reply! I’m happy it worked for you for all these years! I am hoping for the same results. This disease is so unpredictable and very frustrating.

I wish you the best!

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HazelW

Same to you. I am struggling at the moment - my husband died suddenly last year & he was an excellent carer so I really really miss him & help. I do have a very good support network in family & friends - and Lupus UK. If you are not already a member I strongly recommend that you join. The team at Head Office in Romfird are an axing group of people & always happy to help with advice & information.

Good luck. Hope all goes well for you.

FlowerdownAnnC

Hi - i so feel for you the whole lupus journey is scary but hang on in there there’s light & hope at the end of the tunnel.

I was diagnosed with lupus the day before my 33rd Birthday & at that point I saw no future that I wanted to live with. Excruciating pain, immobility, fatigue that was devastating...the list goes on & im sure you can all add to it.

That was 20 years ago & in that time have been on azathiaprine, cyclosporine, tacrolimus however the medication that really turned me round was methotrexate. I would say for about 12 -18 months I would feel unwell for a day or two after taking it but have been on it now 10 years & I would say am now under control. I also take plaquenil ( & the stuff that is aiming to prevent more comorbidities, anti hypertensives, statins)

I now have a full time job, social life, swim & walk - all far more than I ever expected.

I do pace myself- have help at home ( forfeiting little luxuries to pay for that) some weeks I may spend a weekend day in bed but no very often.

I know I’m lucky that I was able to persevere with the methotrexate- I can only speak from my own experience but it was the drug that did it for me!

Good luck & I hope you symptoms are soon under control.

SilentWillow in reply to FlowerdownAnnC

Thank you!

You def give me hope. I was diagnosed when I was 22 right after giving birth to my first lo. At first it was controlled with the plaquenil fairly well but gradually wore on me. I had to phase out of the military and cut my hours to pt in my civilian job. 6 years later when we thought babies were out of the picture, I got pregnant haha life is funny that way. I couldn’t work while pregs and haven’t been able to get back since. Lo is almost three. I hope to return to the workforce ASAP but that’s so hard to do when you can’t guarantee dependability.

I am so happy you are living a fulfilling life! That gives hope to so many of us struggling right now.

Take care

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Sin123

I have been on it for just two weeks and so far, so good. Perhaps just give it a little longer as your body may still be adjusting. Don’t gurget it’s a powerful drug. Best wishes.

Togonoski

I have been on Methotrexate for about a year. At first it was hard on my stomach and made me very tired, but within using it for about 3 months, my body is used to it. I find it helps with my muscle pain. I use it for Scleroderma, My sister has Lupus. Like all medications it works differently on different people, what is great for one person is terrible for another.

Sarahd1609

I’ve been off and on methotrexate for years. The tablets really affected my mouth and stomach but the injection was fine. The only problem I had was my white blood and neutrophil counts kept going through the floor xxx

Joy_1

Hi

I am on MTX, HCQ and low dose Pred.

MTX gave me my life back 2 years ago. BUT it did come with a few side effects. Some of the side effects faded away after a few months.

Firstly I started on 10mg for 2 weeks, then 12.5mg for 2 weeks then stayed on 15mg for about a year I think. I'm no expert but perhaps introducing your body to 15mg is a bit of a shock to the system.

17.5mg is my 'sweet spot' but my gut could not handle it so I switched to a jab and that helped with the gut issues. Also splitting my HCQ dose then solved it completely - this was thanks to the lovely folk on this forum. I take 200mg HCQ with my breakfast and 200mg with my dinner.

As for the headache - I solved that completely by upping my water intake on MTX day and the day after. I usually drink 3 pints of water a day and upping it to 4 pints did the trick. It's quite a common trick that works for the 'MTX headache'. There's a utube video which talks about it - sorry cannot find it at the mo - but the increased water intake helps to flush the excess out of your system.

Joy

SilentWillow in reply to Joy_1

Hi joy!

That’s amazing. It sounds like you have really got it down! Those are great tips! I noticed by drinking more water has helped. My mouth feels strange.. dry and tingly but no sores...

I’m going to test the rest of your suggestions to see if they work for me! I’m so ready to feel “normal” again and I’m sure my family is too haha.

My doc says he wanted to start higher and adjust if need because he has noticed better results that way.... I know it’s only been a few days and I appreciate all the feedback!

Take care and thank you

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FlowerdownAnnC

Hang on in there! I know I’m lucky that lupus has allowed me to live my life. I wasn’t lucky enough to have children & also lost my marriage along the way.

But the point of what I wanted to say was it’s since taking methotrexate that things improved but it took a while to tolerate it. I had to figure out which was the best day of the week to take it so that the impact effected my work the least. Friday night for me so any groggy feeling hit whilst I wasn’t working. Obviously you’ll have Lo to consider every day of the week so think about days when you’re doing least with her and are at home. Methotrexate used to make me feel really nauseated so I used to take an antiemetic over the 24 / 48 hours after taking it so consider that if you’re effected that way.

I know I’m one of the lucky ones & it’d be wrong to let you think I’m no longer effected in any way by this but my life is so much fuller than predicted at diagnosis.

I hope that the methotrexate starts working for you soon. Meanwhile do what you have to to get through with a 3 year old I appreciate the challenge. ( power naps were my saviour & still are in many ways!)

I read a lot of posts on here but don’t usually reply but I wanted to offer you a positive spin. Good luck & til the time you’re feeling better enjoy Lo, love yourself & be kind to yourself. Pamper yourself & allow others to do the same. 😘

SilentWillow in reply to FlowerdownAnnC

I know we all have our own life struggles and dealing with this ugly disease is just the cherry on top

Thank you for your honesty and stories like yours do give hope so thank you.

And yes a nap a day with the little monster 😉 is definitely a must haha day by day right?!

Take care ❤️

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FlowerdownAnnC

Day by day! 💕x