mtx, P, sunbads and ideas please guys!

[2107]

Morning guys! 

typical this! but hee goes.
As some of you will know i been on mtxfor PA and P for 18 months after spending most of my life covered in P and suferng from PA.
It started clearing up my P after only my 3rd week, and my PA became manageable after about 6 weeks! yeah  How lucky was I!

Anyway - i am flying off for the holiday of a lifetime in 3 weeks - cant wait, its gonna be great.

Last friday my bones started aching more than usual and i found myself having to crawl up the stairs - i forgot how 'funny' that was to be honest! Sunday I got the smallest spots ov P appearing too. I have never experienced P or PA  spreading and worsening as bad ever. This morning i can hardly walk, and my back is covered (well, not 100%, obviously in such a small space of time but 100's of little gutte type spots) My scalp has started to crack and bleed too!

I cant get in with the rhumatologist, and i gave up on my derm a long time ago - my bone guy is, in effect, my derm as we know that theres a pattern in my P appearing and my PA going worse.

Has anyone tried sunbeds whilst on MXT? I have been on the careful side, not going in sun without high factor cream on etc, i had a bad burning episode when i was on cyclosporin some years ago.

I know that a sunbad- as bad as they are will have some benefit with my P and PA, and relaxes me too. So, i think the benefits will out weigh the cons.

Anyone any other quick fixes, even if only fo a week or so! I dont wanna go down the re-bound route but i have had this holiday booked for 16 months and it was gonna be my 1st ever P free holiday - i have even bought shorts and bikinis 

Thanx as always for reading my moans! I do feel like a bit of a fraud moaning about my P and PA at teh moment, as i have been free of it for so long and would of given my right arm for so long P free, but its typicla isnt it? i wanna get my legs out in the sun and they are turning all P!! 

[david_8]

hi, Angela

i have had uva/uvb sessions in hosp/derm clinic while on high dose mtx/dovobet
but all consultants have the own views/regime's ( my mtx was prescribed by my rheumy for pa) and light treatments  by derm for p

  ? if there was a quick fix for every 1 we will would all be on it

  ? have you become tolerant to mtx &pain meds !  try phoning your rheumy clinic about upping the mtx/pain  dose and ask about  any other options available
 as you know there a diff skin type's to whether work out doors  etc &and we can react diff to our treatments /meds etc
and if you had a bad burning  effect with the cyclo, i would be very careful, a good solarium/tan saloon
will give/do a skin patch test, especially if you tell them your  med/history/ meds etc,

but always talk things over with your gp/consultant first


1  regime  that used to work for me for a while many yrs ago
was polytar soak/baths 3times a day and uva treatment but still took 8/12 wks to get 100% clear  for a while !cor them where the days "and have even tried many a stupid experiments " to no avail


hope you find the 1 for you and you have great  p free holiday

[SJ]

Hello

There is now a strong movement towards not mixing MTX and UV therapy.

Obviously, the MTX makes you more photosensitive (as Cyclosporin does) and you risk burning.

But, similarly to cyclo, there is a stronger risk of developing skin cancer by combining the two.

My first PUVA, 5 years ago, was done whilst on MTX. My prescribing derm at the time was useless (GP with Specialist Interest) and just 'signed off' on it.

I got an excellent remission!

I have also since found out from a good a derm 'we do not allow this anymore'.

I would be very, very careful.

Truth is, the cosmetic sunbeds do not really touch flaring or more than mild P...

...you say you know it helps, but have you tried whilst on MTX?

You pay your money and you takes your choice, as they say 

SJ

[2107]

Hiya!

Nope, not tried going near a sunbed whilst on the mtx. I just know from past experience that when my P is flaring if i go and do a few minutes, twice a week it tends to help. Its more to do with turning brown and the patches fading into the colour and the fact that i can totally relax when on a sunbed, i usually feel like i have spent a day in a spa when i have done a quick 6 minutes so tend to feel better and the heat usually helps my bones, all be it for a few hours.

I have just spoke my GP, couldnt reach the consultant! Although he isnt a derm/rhumey he has special interest in P, he says that basically do whatever with caution! His main concern is that historiscally my PA follows my P, so the worse my P gets the worse my PA gets, so he said that although he would never condone using a sunbed for any of his patients you have to look at the big pcture.

They wont increase my dose - the consultant i see doesnt believe in treating PA wih does over 22.5mg PW.

I guess i am gonna get greased up, bath in dead sea salt and try to stay calm and drop some deep breathing into my day! I dont wanna risk anything too wacky, and i dont wanna start on creams and potions again so gonna try and get some fruit and greens in me and count down the days to my hols!


I best stop moaning me thinks!!! and be thankful that i can walk with the PA, 19 months ago i was almost in a wheel chair!

 

[SJ]

I hardly call it moaning! 

It is understandable. I know, when everything goes wrong for me P-wise, I feel pretty down.

Hopefully, things might calm down. But you know yourself and your body....

....it could be you are becoming non-responsive to the MTX now. It happended to me too.

You might well be a candidate for Enbrel now?

SJ