Advice

[JayneN]

Hi I wanted to ask if anyone knows .... I’m currently taking 150mg secukinumab biologics . I’ve now gone to monthly injections. I only take 10mg MTX. I’m thinking of booking a holiday abroad in a few weeks and obviously I don’t want to be stuck under a parasol with 50 factor on like last year unable to enjoy my holiday . So I wanted to know would it be ok to stop my MTX a cpl of week before I go then start back up once back from holiday ? Only so I am able to enjoy the sun without covering up all the time ? ........thanx

[helixhelix]

I'd talk to your rheumy team about it if this will be more than 2 weeks. I find I can miss a week without making any difference, but have never tried more than that. My concern is that a couple of weeks wouldn't be long enough to change your sensitivity to sun and that instead you would flare. So worst of both worlds rather than the best. Sorry! Check with your medical team.

[JayneN in reply to helixhelix]

Thankyou ... wise words as always . I have been looking up how long it takes MTX to leave the body and it says a week . But obviously the skin will still be sensitive. I’ve also had skin cancer in 2015 so I’m extra cautious anyway . I’m due to see nurses in 3 weeks so will ask see what they say as I don’t want to be in agony all for the sake of 10 days in the sun ..... wish u well ....

[JayneN]

Thanks Ajay I can only dream . Haven’t touched alcohol in 18 months . Tbh not really bothered but would be nice to have an option.

[helixhelix in reply to JayneN]

Ask your nurses about this as well. Current advice seems to be that once settled on MTX, a couple of units of alcohol a week is ok ( tho' not all at once!).

[JayneN in reply to helixhelix]

Yes they gave me a chart to show me the units your allowed but then

Said if you can do without it’s much better . I’m not a drinker atall but it’s nice to have the option if you wanted to or not .

[AgedCrone]

Ask your rheumatology nurse...Mtx stays in the body for a long time...if you are sun sensitive on it I would imagine stopping for two weeks wouldn't really help.

I'm probably quite wrong....but would hate to see you burn on first day of your hols!

There are some brilliant fake tanning lotions these days....slather that on every morning & no one will know the difference!

[JayneN in reply to AgedCrone]

I fake tan all the time as I’ve always been brown with goin on holidays but I went to Cyprus in September last year and sat covered up under a parasol for 10 days frightened to go in the sun . The 1 st time I did I burned all my legs so DONT want that to happen again . What I don’t get is that I’m only taking 10mg... what does that tiny amount actually do ? Im in the mindset that that 10mg is ruining my life and stopping me doing lots of things . I used to socialise with friends all the time but I’ve not been out once or drank alcohol in 17 months it’s now getting to me if I’m honest .

[helixhelix in reply to JayneN]

I think you've answered your own question....."I'm in the mindset...."? This disease does play with our minds, and you do have to find a way to accept it and live around it otherwise it does get to you. If the type of socialising you used to do doesn't work for you anymore, then perhaps think of other things you could do with your friends? I used to go out drinking in the evenings, and now we meet for tea!

People who don't take any MTX can burn horrendously in the sun the first time they go out in it if unprotected. I find that as long as I acclimatise very slowly, after a few weeks I can move from factor 50 to factor 30 and even get a bit of a tan.

[JayneN in reply to helixhelix]

That is what I’m going to do ... Thankyou your advice is always welcome . And definitely agree about it playing with the mind , I’ve never gone through so much in so little time . The Colitis for 18 yrs took over my life for 12 yrs but I live with that and if I can go through what I have even being in ICU twice because of it then getting skin cancer I’m sure I can sort this awful disease out and get some sort of normality . What does me is I started my Biologics 6 weeks ago and within a week I felt great so I thought at last I’m feeling quite pain free now 6 weeks in the pain is horrific in my back and hands and arms yet again . It seems we all take 2 steps forward then 5 steps back . I won’t let this win me .