methotrexate

[JLAR01]

hi all

I have been on hydrochloraquine twice daily for a while now which I have seen no benefits. If anything I am way more fatigued and my pain is worse.

My consultant wants to start me on methotrexate- a medication I’m not too happy to be taking as a 27 year old.

Has anyone got any advice/guidance regarding this medication?

I have a meeting with my boss at work today to discuss also…..

thank you

j xx

[Tiggywoos]

Hi JLAR

I just wanted to say my best friend was on MTX from the age of 14 for severe psoriasis and she never had any bad effects from it . She stopped the MTX at age 40 to have her daughter - ironically her daughter is just about to start it too as skin is so bad .

Don’t forget you will get regular blood tests so they will pick up if it’s affecting your liver and from what I can gather you can stop it at anytime (unlike some of the other drugs) . I tend to get the impression it either works really well or not at all if that makes sense . Good luck and take care x

Ps you’ll get loads more advice

[RosieA]

Perhaps another way to look at this is to ask yourself what the alternative to taking the methotrexate would be. Do you want to try to carry on as you are? Is there a risk that you will accrue further damage if you do? What reasons did the consultant give for wanting to increase your medication?

Sadly, methotrexate didn't work for me but I know that it can be very successful for others. I have had good results with Hydroxycholoroquine and we know when a med works - the diary stops being full of symptoms and you just start getting on with life - not quite the good old days but much better than before.

I don't say any of this flippantly as I am having to go onto stronger drugs- probably azathrioprine (sp) and like yourself, am a bit anxious but I know that there is no choice. The disease is not well controlled at present and damage is being done.

I hope your boss is understanding. It is worth chatting through that there might be an adjustment time but your aim is to get your disease under control. I took MTX in injection form - avoids upsetting the tummy. My side effect was feeling wiped out but as I said, others tolerate it very well. I hope this helps a little and I'm sure others will offer more advice.

[Djlr]

What do you mean by “awhile”?

It takes “4-6 MONTHS” for most people before you feel the joint PAIN to ease up - using HYDROXYCHLOROQUINE.

Some doctors say it might take one to three months, but most people that I know living with Lupus, it’s every bit of 4 to 6 months before we can really tell the ‘joint pain is beginning to subside’. Noticed that I said ‘subside’, not go away.

It never really goes away, it just gets better & more bearable when acting up at different times during FLARES.

If after six months, you are not feeling better, I would definitely talk to your rheumatologist about adding a biologic, possibly to your regime to get your lupus under control – Benlysta or Saphnelo.

Both of these last two Biologics have been getting good results for many people living with Lupus.

[Murp17]

I have also been on hydrochloraquine for a number of years and have found the methotrexate helps with fatigue

Hope this helps

[heatherose]

Hi there, I was diagnosed with lupus, aged 24. I kept getting flair ups and put on steroids. This patern of flair up- steroids lasted a number of years. I resisted methotrexate for a long time.

I cannot remember for how many years ago i began taking methotrexate, well over 10 yeras ago, but i can honestly say it has been a miracle drug for me. I never have flair ups. My joint pain is hardly noticeable and I am rarely fatigued. It did take a good few months to see the benefits of it.

I know everyone is different, but I would love to think methotrexate could be as beneficial to you as it was to me. Iam very reluctant to take any medication ...but wish I had started this medication when it was first suggested to me by my consultant.

Wishing you all the best.