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So now my psoriasis has spread to my eyes...

(38 Posts)
Theincidental Wed 26-Feb-14 21:17:49

I already have plaque psoriasis on my face, scalp, ears, arms legs and back with no remission in three years and now it's my eyes too.

They are weepy, gluey and red and very sore. Tried all topical creams on my body and ketopine for my scalp to no avail.

Terrified of metho and biological with the side effects and long term impact on my body.
Can't have light therapy as the nearest service is over an hour away and completely incompatible with work and childcare.

But what's left to try?

Does anyone have any ideas?

RandomMess Wed 26-Feb-14 21:21:23

Dh developed PA so had to take metho for a while, he didn't need to be on it long - so perhaps it's worth trying?

Have you asked to try vitamin D supplements as those with psoriasis often have low levels - I wonder if they would help?

Most of all hugs - sounds very painful sad

Theincidental Wed 26-Feb-14 21:23:39

Thank you.
How long did he take metho for? Was it successful?

I'm scared of the tiredness and nausea. Single parent to a toddler working full time so really can't be unwell.

pancakesfortea Wed 26-Feb-14 21:24:53

Gosh that sounds horrible. I have psoriatic arthritis. I went on to methotrexate for the arthritis as the psoriasis was never so bad.

I can't lie, the side effects were grim to start with. But I got used to it and have none now. And if has made a massive improvement to the PSA.

WildThong Wed 26-Feb-14 21:25:32

I don't know if this will help but my dad suffered terribly for years and years with it. He used to scratch until his skin bled but it was always topical betnovate or similar. Useless. Eventually he went to a private consultation and whatever he was given there really made a difference. Is that maybe something you could try?

pancakesfortea Wed 26-Feb-14 21:27:20

I have a weekly dose, by the way and the side effects were all immediately after taking the drugs and the morning after. So you can at least plan a bit around them. It's not all week.

Theincidental Wed 26-Feb-14 21:37:15

I had wondered about scrapping together some cash to go private as my gp just has no creative ideas at all, just more diprobase or double base! The consultant just wanted to push metho and refused to consider any other treatments options until I at least tried it.

I wonder if I could take a metho dose in the evening when my Ds is asleep so I could cope with the side effects better.

RandomMess Wed 26-Feb-14 21:42:23

Yes dh only suffered the side affects really bad for a day and used to pick when to take it. I can't remember how long he was on it, probably about 9 months - really cleared his lesions up!

I think if you took it at lunch time on a Friday you'd be your worst on the Saturday but feeling much better by the Monday?

pancakesfortea Wed 26-Feb-14 22:25:37

Yes they recommend that you take it before bed so that you sleep through the worst of the side effects. The effects should only be fairly short term. Mine persisted a bit so they shifted me onto injections rather than tablets which sorted it.

pancakesfortea Wed 26-Feb-14 22:27:08

I was reluctant to try methotrexate for a couple of years and the consultant was happy to try other things. You might need to be quite assertive but do be clear if you want to hear about other options.

Theincidental Wed 26-Feb-14 22:49:45

I'm beginning to wonder if I should just brave the metho. They won't use biologics unless I have tried it and light therapy.

I'm not keen on the biologics either. In fact all the possible drug treatments seem to be very heavyweight with frightening side affects.

I know I could improve my diet and exercise more but I struggle to work out what I should eat. Going tea total does help when I stay away from all alcohol for periods if time, but the psoriasis creeps back again regardless. It's the most demoralising illness.

Sorry, I realise I'm not the only one suffering with it. Really feel for you all too.

Icantstopeatinglol Wed 26-Feb-14 22:58:45

Hi op, I think if your psoriasis is so bad it might be ok to take the methotrexate even just until it clears. I've found in the past once your skin starts to clear of you keep on top of creams etc it can calm down loads.
I'm currently on methotrexate for psoriatic arthritis but stopping soon cos side effects are getting too much. They were ok to start off with so seeing consultant soon to discuss options.
Good luck op, it's a hard thing to deal with flowers

pancakesfortea Wed 26-Feb-14 23:09:45

Don't apologise OP, it's really awful when you feel out of control of the disease but the treatment options seem even worse. I hope things improve for you soon.

Ruprekt Wed 26-Feb-14 23:13:25

Sounds horrible. thanks For you.

Not sure if this is relevant but my rosacea has cleared up brilliantly since following a low carb diet. No sugar.

Looks fab! Sugar seems to anger my skin. confusedconfused

PattyMcGinty Wed 26-Feb-14 23:28:45

Have you tried zinc supplements? I know someone who had great results after taking them (and after trying everything else for years)

kazzawazzawoo Thu 27-Feb-14 08:59:19

I have had psoriasis most of my life, but not as bad as yours. I can't clear it from my scalp at all hmm

Maybe try cutting out all sugar and dairy? They are common culprits. Also introduce a vitamin d supplement.

MorrisZapp Thu 27-Feb-14 09:03:46

Caffeine and alcohol were my worst enemies when I had psoriasis badly. I still have it on my scalp but not so much on my body.

I'm on sertraline (started on it for PND and still on it years later) and I think it's holding back the psoriasis, although I wouldn't imagine a GP would ever prescribe an AD for a skin condition.

It'll be light and warm soon, the sunshine will be your best friend, especially for facial plaques. I used to go on sunbeds too, they work and I don't care who judges.

gertiegusset Thu 27-Feb-14 09:07:39

I looked at this because DD has psoriasis, hadn't heard of methotrexate as a treatment but it sounds pretty harsh, have just googled.

trulyenoughnow Thu 27-Feb-14 09:22:12

Psoriasis is so frustrating. I have no idea whether this will help you op, but after suffering from psoriasis from ages 2-24 I have been entirely unmedicated and spot free for ten years. This is what I did and if it doesn't help you , I hope it helps someone out there.
- eat low carb/ cut all gluten (this was major for me)
- avoid foods severe on the liver too, so rich cheese/pork out.
- no alcohol
- regular osteopathic/ chiropractic treatment if you can afford it. Don't be self conscious about yr skin here. These health professionals are very well used to dealing with skin complaints as a primary reason for consultation.
- no metallic anything near your skin. No lurex, no metal zips, buttons, cheap jewels etc. I wear no jewellery. Defo no metallic/ sparkly make up not just obvious stuff but even those teeny shimmers in face powders etc.
- wear animal fibres next to the skin. Sounds extravagant, who cares, use charity shops and get used to sourcing these. Follow dr. Jaegers ideas about this for skin care. So silk(knitted type) undies, cashmere, fine merino wool tops from gap. This shouldn't be underestimated and I know it sounds expensive. It is, but these things if well cared for last years.
-use only olive oil as cleanser, moisturiser.
- avoid petrolium based products
- sanex in the shower
- don't use Aveeno if gluten is an issue
- take regular exercise that makes you sweat
- sun and saltwater of course v effective when u can.
Good luck op.

MikeWazowski Thu 27-Feb-14 09:22:20

I take methotrexate for psoriatic arthritis, and was very concerned of the side effects. I've been on it just over a year and the psoriasis cleared with about 6 weeks, not so for the arthritis though hmm. The side effects really don't last long, 24 hours ish I suppose but make sure you take folic acid on the right day, usually 2 days before metho, (I have metho Monday and folic Friday!).

If I was you if give it a try, then hopefully you'll be clear by the spring and the sunshine will help as well.

Theincidental Thu 27-Feb-14 18:13:07

Wow. Thank you everyone for the info and advice.

I had been knocking caffeine out, but I love my coffee! I think I'll persevere as it was lessening. Alcohol is the same.

I'm already veggie so no cheese or gluten would be very harsh. Less sugar would be good for all sorts of reasons!

I use coconut oil to good effect and no petroleum products or metals.

RockinD Thu 27-Feb-14 18:21:38

Like others, I can only go on my own experience, but after 23 years, I now have NO active psoriasis AT ALL.

In the last five years I have fixed, in no particular order: low ferritin levels, low vitamin B12 levels, low folate levels and very low vitamin D levels. I also cut out sodium lauryl sulphate and its derivatives in their entirety and cut out most gluten from my diet.

Doing this made a remarkable improvement in the amount of active psoriasis I had.

The final piece of the jigsaw was getting my underactive thyroid optimally treated.

I hope this may help someone else.

Theincidental Thu 27-Feb-14 18:35:47

Rockin' thank you. Did a blood test identify the low levels? Wonder if I should ask the doctor for one.

I have no idea about my thyroid as well.

RockinD Fri 28-Feb-14 09:25:36

Yes, in my case the issues were identified by standard NHS blood tests. Psoriasis is an autoimmune condition and if you have one autoimmune condition, you are more likely to have others, and the low B12 etc goes hand in hand with it all.

Waltonswatcher1 Fri 28-Feb-14 13:40:15

I had light treatment years ago when mine was at 80% coverage . It was heaven . You must try to get to the treatment , even just for a few to kick start your psoriasis battle !
I now eat a low nickle diet (free from cocoa nuts oats ) and as I am penicillin allergic only organic animal products .
Alcohol is a no go and caffeine is a treat .
I treat my skin with respect and use no products .
If I am going through a stressful or busy time my psoriasis leaps I to action and tells me to slow down .
My weak area is my scalp , I can't find a shampoo that helps .

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