Question for ex-MTXers

[Mimz]

If you've ever been on methotrexate but no longer take it, why did you come off it? And what happened when you did? I've been on MTX (10mg) since June 2011 and it's generally working very well for me, although my P is coming back on my leg so my derm might increase my dose next month when I see her. But I'm wondering how long I'll be able to stay on it so I'm interested to know why other people stopped it, and also what happened to them when they did.

Mimz

[Freya1]

Hi Mimz

I was on MTX 3 Times, the first it was fab but I got cocky with my clear skin and came off it ,the second time it didn't work too well and I had the side effects so I felt it wasn't really worth it.  The 3rd time it worked reasonably well but the side effects were impacting on my life - I felt like I was living in a fog and I was disconnected from everything.  I was permanently tired and MTX didn't seem to work too well (I was on 20mg so there wasn't much wiggle room left) which didn't seem to make it worth keeping going on it.

My skin did flare a bit when I came off the MTX but not horrendously but I moved on to Fumaderm pretty quickly so it didn't get time to take hold.

Good luck with the MTX, I hope that increasing the dosage helps keep your p under control

Freya

[nells]

Hi all,
I have tried it, couldnt really do with the monthly blood tests but suffered them but it made no difference to my skin, had ps for over 25 yrs now ,been there tried it, nothing helps, its always bad, just sometimes worse, lost everything down to this dreaded plague, including my long term partner..thats life for me as always depressingly, c**p !!!
sorry its not better news, I expect it works for some.

[Mimz]

Thank you for your replies. Freya, it's really interesting that it didn't work as well the 2nd and 3rd times; do you think that had something to do with having taken it before?

The side effects aren't affecting me too much now I have the nausea under control. I'm tired all the time, but learning to live with that, and still managing to do my degree and get top grades. And I've had to have regular blood tests since I was 6, so they don't bother me at all. So I'd love to stay on MTX forever, but I know that's not possible.

Mimz

[Freya1]

Hi Mimz

I think it probably was because I'd used it before as I do find that I grow used to treatments quite quickly and they stop working quite so well for me.  For any of the creams I've used over the years I have to swap them about week on week to continue to get some relief.

In terms of MTX if you can cope with the side effects it does work and you can keep it on for quite a while and if you're only currently on 10mg you have plenty of room to move up if necessary.  The idea is that you move up and get 100% clearance and then start to decrease to a management dose - as (I think) there is a finite amount of MTX you can take the extends the time you can take it for. 

When I was first on it and had got 100% clearance I went on holiday to Greece and wore a bikini for the first time in.  Not something I could have done in the preceding years - it was bliss (although scary for the others on the beach 

Good luck with the MTX and I hope it continues to work for you

Freya

[TJB]

I was on MTX for approx 15 months. Started at 7.5mg and rose to 25mg after about a year.  at first i had nausea and extreme tiredness, but this seem to ease(or maybe i just got used to it) after 6 months or so, i also had a period of about two months where i lost quite a bit more hair than usual,  .after i had taken 25mg for about 2 weeks i had the most excruciating headaches, sickness and i just couldnt move without making it worse, so thats why i was taked off, as a lower dose wasn't making any difference to my pain, inflammation etc.
Tracey 

[Mimz]

Freya, it's great that you were able to get out in a bikini! I don't think I'd actually fit in a bikini, irrelevant of how my skin looks! Interesting that your body gets used to treatments so quickly, you have my sympathy with that, it must make things very difficult.

Tracey, this is very useful to know, thank you. Sounds awful though, must have been horrible for you. I've been losing a fair bit of hair, but I have trichotillomania, so have bald patches anyway. I'm sort of hoping my derm puts my dose up, but am worried about the side effects, so will bear this in mind.

Thank you both. 

Mimz