Dont know what to do? Can anyone help please?

jayney44

Hi

Hoping you're all as well as you can be?

Sorry I've not posted for a while and feel guilty that I should only do so for a moan, but here goes......
I was diagnosed with psa in the majority of my joints, and RA in my spine. I am on various medications, including Anti-TNF drugs and methotrexate, which I inject weekly.
Recently, I've had tonsillitis, which I was given antibiotics for, and to be honest, I felt I was starting to get better. However, after a lovely weekend away with my hubby, in Manchester, and a laze in the sun on Sunday, I came out in an awful rash. I was covered. The GP said it was an allergy and I've had bloods taken to see if this is the case. Since then, the allergy rash has gone, but I'm now covered in psoriasis. I've had no bouts of this for a couple of years, but wow, has it come back with a vengeance!!!
Its really getting me down and am finding myself more and more reluctant to go out of the house. When I do go out, I cover up completely, even in this warm, humid weather. :oops:

Has anyone else had an experience like this? Would really appreciate any advice as I'm slowly losing the will to live.

Sorry this post is lengthy, but thank you in advance for taking the time to read it.

Jayne xx

maria09

Hi Jayne welcome back
I'm so sorry you are having such a rotten time
I have no advice I'm afraid only my support
Maria

DebbieT

Hi Jayne,

Did you wear sun block wen you were sun bathing? If not that could well be ure problem along side the tonsilitis!! Methotrexate thins our skin & means we really do have to take much greater care in the sun.

I got psoriasis for the 1st time on my 25th birthday. I got sunburnt & believe it or not, I had tonsilitis at the time. That combination was enough to trigger it in me :? I have had severe chronic plaque psoriasis ever since, so 18 years. One thing I've always refused to do is hide my skin tho. I worked with children, the most curious & blunt people on the planet, as a netball & gymnastics coach. I'd get asked wot were the scabs all over me & I'd just reply that my skin grew too fast & that they couldn't catch it. That always seemed enough to satisfy their curiosity & they'd move on Ure clearly self conscious tho & I think thats a real shame, especially as being out in the sun, wearing a 50 factor total block, is the thing that will probably help you the most!! :?

Have you been referred back to a dermatologist? If not I'd request to be asap. They can tweak ure meds perhaps, or offer UV treatment, topical ointments etc but keeping wrapped up in this heat really won't help at all so even if its just at home please don't stay covered up

I'm on 30mg methotrexate a week & my psoriasis has never completely cleared up, not even for a day. I'm getting a lot of chest infections now which may be a problem for that drug in the future for me but having infections as my flare trigger for psoriasis too is a real nightmare :? This may be the case with you now or it may have just been the tonsilitis, as it's a well known trigger for psoriasis!!

The 1st month b4 my psoriasis was diagnosed it looked like a lumpy itchy rash & then it became clear it wot it was. I really do think ure infection & the sun bathing are connected to ure flare but I'd still seek a dermatology referral for treatment. I'm no Dr after all
Id also ask ure GP for an antihistamine to help with the itchy scales for now & either topical treatments or at least an Aqueous cream to try & stop it drying & splitting too badly!! Also it maybe worth requesting ure sun block on prescription, I get a 50 total block in a roll on form, it's easier to apply than a cream. It's expensive tho that's why I get it prescribed. Good luck, keep us posted.

Massive hugs & don't give up.x

stickywicket

Welcome back, Jayne.

I’m sorry you’ve had this nasty experience but methotrexate and sunshine just don’t mix. (I don’t know about anti-tnfs.) I wear sunscreen just to sit in the shade and the hotter the sun the more likely I am to wear a long sleeved blouse. I think ‘lazing in the sun’ has to be off-limits for you in future.

I’m sorry, I can’t help with the psoriasis as mine is RA.

barbara12

Hello Jayne
Sorry you are suffering like this it sounds awful, sorry I cant offer much help..apart from could you be allergic to the sun block...I don't have psoriasis ...but some sun blocks bring me out in a rash..I hope it clears up soon..tonsilitis is bad enough without anything else...x

dreamdaisy

I posted about this recently when that odd thing known as the sun began to make its sporadic appearances. Methotrexate and anti TNFs can increase the skin's photosensitivity - I too have to cover up with long sleeves and a scarf for the back of the neck to avoid meth rash. As for psoriasis mine is kept under good control by sulphasalazine but, should I sit out for too long in the sun that too makes a comeback. I don't go out between 12 and 2 on sunny days, but if I have to (even on non-sunny ones) then sunscreen is applied; it may not be shining in an azure sky but the rays are still there.

The meds can only do so much to help us, the disease will always find a way to make its presence felt. The only thing to remember is that this bad time will pass because all things do. Take care and I hope things get better soon, keep up with the emmolients (my GP prescribed doublebase gel for me, it's lovely) and that will help. DD

frogmorton

Oh you poor thing

Do you see a dermatologist I wonder?? If not could you ask to see one -it sounds as though you could do with some help with your skin.

Love and very gentle ((()))

Toni xx

jayney44

Hi All

Thank you all for your words of encouragement - they mean a huge amount.

I've never had a problem with the sun before. I've been on meth for 18 months subcutaneously and before that was on meth orally for a few years. I know it probably seems really silly, but holidays in the sun were my only pleasure left in life. To think that I can no longer do that now either is devastating.

I've been seen by a dermatologist before and am due to see my GP next week re my blood results so will certainly be asking for a referral back to see her.

Didn't realise that tonsillitis could trigger psoriasis off, so thanks for that.

I've been given a steroid cream by my GP and cover myself in diprobase too to moisturise. The antihistamines don't appear to be doing anything to stop the itching, so have left them off.

I'm so sorry this has turned into a moan again.

Thank you all for your support. It is really, really appreciated.

Gentle ((( ))) to you all

Jayne xx

stickywicket

I hope the treatment works. As for the sunbathing - I think that's possibly a thing of the past. Please check with your rheumatologist but meth and photosensitivity do go together. I hope you can still enjoy your holidays but in the shade.

DebbieT

I still sunbathe abroad & I take 30mg mtx!! I think you just need to be really sensible from now on about sun block & avoiding the hottest time of day ... We'd usually nip off & have lunch at that time x

villier

Hi Jayne like Maria I have no advice, I just wanted to say hello and give you some support....................tc..............Marie xx

Starburst

Hi Jayne,

Sorry to hear you're having such a tough time. Like others, I suffer with photosentivity. I always have done and it increased ten fold on MTX, although I'd been taking it for over a year and was no worse than usual until one randomly sunny day. Factor 50 applied plentifully and regularly as well as being sensible in the sun means you can enjoy some time catching the rays. Also, I can't remember where I read this but try to get a suncream that is UVA and UVB - it's much better. A decent brand of sun cream is a must, I know it's not exactly cheap but I do notice the difference.

Please don't feel you have to apologise for a moan. That's what we're here for! We all stumble along similar paths and know what it can be like.

Take care!