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Psoriasis

Sykk

Hey all,

So I have been to around 4 different doctors over a skin condition I've had for around a year. 2 didn't know and 2 said I have psoriasis. It's very annoying, looks bad, and has a chance of spreading...

I have it on some parts of my head and the doctor told me there is no cure for it, it's only containable.

I have done some looking up on the web about cures, and some people say it's not cureable, some say it is. I have yet to go to a dermatolisist (I've one booked) or a chinese herbalist.

Does anyone else have this skin problem? If so what are you taking for it? And does anyone know if it's actually cureable or not.

Thanks in advance.

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Gael23

Mountainsandh wrote: »

Not really, I guess it was the first port of call and cheap, so I'm still happy enough with it for another while. It's nice to think I have other options if it stops working

You pay a max of €134 to get any medicines so biologics will not cost you any more. They gave me my life back. It’s not something you do lightly but do consider it.

Mountainsandh

eeloe wrote: »

Take the few days, put the feet up and just get better.

Have you ever thought about changing from MTX to a biologic?

Not really, I guess it was the first port of call and cheap, so I'm still happy enough with it for another while. It's nice to think I have other options if it stops working

eeloe

Mountainsandh wrote: »

Well I'm done. She advised to come in, as with the Mtx you're a little bit more fragile I guess, but she was more concerned with the blood pressure medication and dehydration due to the bug. I was due bloods this week but she took them today so that ties in nicely.

I'm certified off work until Wednesday, and I'll get the blood results then. Since it's also the day I take Mtx, she said to ring in and we'll advise then. If the bug was lasting that long (which I highly doubt), then she said the normal thing would be to delay or skip the Mtx until the following week.

3 days off work seems a bit excessive to me, but she said with these bugs you're contagious for another 48 hours even after the end of symptoms, and that'll give me leeway to build up immunity a bit before I dive back into the bath of germs that is my school.

Calmcookie I know the feeling ! Like when I was going for light therapy, every single time the nurses : "are you moisturizing ?" JUST. STOP. SAYING IT !!!

Take the few days, put the feet up and just get better.

Have you ever thought about changing from MTX to a biologic?

Mountainsandh

eeloe wrote: »

let us know how you get on :cool:

Well I'm done. She advised to come in, as with the Mtx you're a little bit more fragile I guess, but she was more concerned with the blood pressure medication and dehydration due to the bug. I was due bloods this week but she took them today so that ties in nicely.

I'm certified off work until Wednesday, and I'll get the blood results then. Since it's also the day I take Mtx, she said to ring in and we'll advise then. If the bug was lasting that long (which I highly doubt), then she said the normal thing would be to delay or skip the Mtx until the following week.

3 days off work seems a bit excessive to me, but she said with these bugs you're contagious for another 48 hours even after the end of symptoms, and that'll give me leeway to build up immunity a bit before I dive back into the bath of germs that is my school.

Calmcookie I know the feeling ! Like when I was going for light therapy, every single time the nurses : "are you moisturizing ?" JUST. STOP. SAYING IT !!!

Gael23

Calmcookie84 wrote: »

I was using Enstilar for two months on my whole body. It has minimal results on me. I’m at my GP’s office now hoping to get something that’s going to help me. My legs are still red raw and very itchy. If he tells me to moisturise one more time I’m going to clatter him.

You need to see a dermatologist when it goes like that really.

eeloe

Calmcookie84 wrote: »

I was using Enstilar for two months on my whole body. It has minimal results on me. I’m at my GP’s office now hoping to get something that’s going to help me. My legs are still red raw and very itchy. If he tells me to moisturise one more time I’m going to clatter him.

Could you get a referral to a dermatologist from your GP?

Or have you already been?

Calmcookie84

I was using Enstilar for two months on my whole body. It has minimal results on me. I’m at my GP’s office now hoping to get something that’s going to help me. My legs are still red raw and very itchy. If he tells me to moisturise one more time I’m going to clatter him.

eeloe

Mountainsandh wrote: »

Am waiting at to now

let us know how you get on :cool:

Mountainsandh

eeloe wrote: »

I'm sure the tiredness will pass for me in time, hopefully!

As for yourself, i would 100% at least ring the GP's office, If i ever get sick while on these meds i'm sure my GP is going to be sick to the back teeth of hearing from me.

Am waiting at to now

eeloe

Mountainsandh wrote: »

I hope the tiredness will be even less of a feature for you in time Eeloe.
I took my first heavier Mtx dose Wednesday last. Mr M had a virus last week, and I came out with it Saturday: vomitting bug. It's pretty bad, I tried eating yesterday evening but didn't work out (sick). Waking up nauseous now so I don't think I'll eat today.

I don't know whether to to to GP. I know I have been warned not to ignore illness while on Mtx, but is there a point in consulting for norovirus ? Hse website says there's no need, but no mention of being immune compromised.

I think I'll probably ring gp s and ask later on. I just hope it won't drag on for days, and I haven't been getting benefit of blood pressure medication + haven't taken folic acid yet as they wouldn't stay down.

Had several dull arthritic pains yesterday too, don't know if it's an inflammatory response sort of.

I'm sure the tiredness will pass for me in time, hopefully!

As for yourself, i would 100% at least ring the GP's office, If i ever get sick while on these meds i'm sure my GP is going to be sick to the back teeth of hearing from me.

Mountainsandh

I hope the tiredness will be even less of a feature for you in time Eeloe.
I took my first heavier Mtx dose Wednesday last. Mr M had a virus last week, and I came out with it Saturday: vomitting bug. It's pretty bad, I tried eating yesterday evening but didn't work out (sick). Waking up nauseous now so I don't think I'll eat today.

I don't know whether to to to GP. I know I have been warned not to ignore illness while on Mtx, but is there a point in consulting for norovirus ? Hse website says there's no need, but no mention of being immune compromised.

I think I'll probably ring gp s and ask later on. I just hope it won't drag on for days, and I haven't been getting benefit of blood pressure medication + haven't taken folic acid yet as they wouldn't stay down.

Had several dull arthritic pains yesterday too, don't know if it's an inflammatory response sort of.

eeloe

So, here I am 3 days after my first shot of stelara.

Got it at 10:30am on Thursday, as I said earlier, it stung a bit, and I felt a bit woozy for about a half hour after it. The injection site has been like a bad bee sting since Thursday, it’s just about gone now tho so not so bad.

At about 3:30 that day I got this bout of tiredness, I was just wrecked. Fought it off for the rest of the day, just stayed busy. Went to bed about 11.

Got up Friday and I was pretty busy from about 8am, and again at around 5pm I noticed the tiredness hitting me again, much earlier than I would normally feel wrecked. Went to bed about 12, woke up at 10am saturday(I never sleep for more than 8 hours, so this really did knock it out of me.

Stayed busy for the whole day Saturday and got tired around 5pm, but I had a function that evening so had to just stay awake again. Bed about 1am, and awake about 9:30 on Sunday.

No tiredness at all today...which is good.

So i guess it’s just tiredness...I didn’t try to fight this with energy drinks or anything, just maybe a couple of cups of coffee, good food and lots of water.

I can say tho, and it might be just me telling myself there is a difference, but there IS a difference in my skin...flaking is considerably reduced. I completely stopped using topical steroids, all i’m using as moisturiser is aveeno dermexa.

0lddog

If you are on 20mg or over of MTX then have a read of :

https://www.ncbi.nlm.nih.gov/pubmed/24728329

(also at https://ard.bmj.com/content/73/8/1549 )

huskerdu

Mountainsandh wrote: »

I'm on a higher dose methotrexate since yesterday, it was about time as I had a knee flare (arthritis) and lower back pain just appearing at the beginning of the week. Hadn't had a knee flare since before the summer I think.

Anyway, my folic acid was split into 4 doses per week and none day before-day of-and day after Mtx, but now with the new dose for more chances to have the full benefit rheumy has put me back on once a week folic acid.

But I don't remember how many days I should leave it until I take it !!!
I think it's mtx day, then wait 4 days and take Folic Acid on 5th day. Anyone remember ?

I know it won't make a huge difference, but anyway.

I'll be ringing the rheumy nurse too, I'm just asking here as a back up.

Eeloe best of luck with it.

I was offered the Mtx injections but I delayed for cost reasons (tablets much cheaper), if the side effects are too bad with heavier dose I'll make the move. Any experience of that welcome. (my "heavier" dose is only 20 or 25 mg_ too tired to go check) so not huge either)

I’m on 25mg of mtx. I didn’t find the side affects got worse as I increased the dose as long as I only took it with food. In fact , my side effects decreased over time even though the dose increased. Hopefully you’ll have a good experience. Also , my doctor has never specified what day to take the folic acid apart from not on the same day at the mtx.

eeloe

Thank you for the well wishes.

I think the highest dose of MTX you can take is 25mg, after that you’ll be moved on to the injections. From what i’ve read the injections are much better than the tablets for effectiveness and also less side effects as it avoids the digestive tract.

I hope you do fantastic on whatever route you take with it.

Mountainsandh

I'm on a higher dose methotrexate since yesterday, it was about time as I had a knee flare (arthritis) and lower back pain just appearing at the beginning of the week. Hadn't had a knee flare since before the summer I think.

Anyway, my folic acid was split into 4 doses per week and none day before-day of-and day after Mtx, but now with the new dose for more chances to have the full benefit rheumy has put me back on once a week folic acid.

But I don't remember how many days I should leave it until I take it !!!
I think it's mtx day, then wait 4 days and take Folic Acid on 5th day. Anyone remember ?

I know it won't make a huge difference, but anyway.

I'll be ringing the rheumy nurse too, I'm just asking here as a back up.

Eeloe best of luck with it.

I was offered the Mtx injections but I delayed for cost reasons (tablets much cheaper), if the side effects are too bad with heavier dose I'll make the move. Any experience of that welcome. (my "heavier" dose is only 20 or 25 mg_ too tired to go check) so not huge either)

Misguided1

Hopefully it won't take long to kick in for you eeloe

Good luck with it!!

eeloe

So had the injection at 10:30.

Stung a little bit, and now I have some slight swelling at the injection site.

And I feel slightly woozy, ever so slightly. Hopefully it won’t last too long.

Let’s go, team Stelara.

Gremlinertia

Best of luck eeloe.

qo2cj1dsne8y4k

Good luck eeloe

eeloe

Okay, even tho i've been waiting for this day for months, i'm kinda sh!tting myself this morning.

And i don't know why......

hank scorpio89

I suffer mildly with psoriasis but I have had it bad at times in my life.I'm not sure if it's been posted before but have a look into the carnivore diet.it's basically a meat and egg only diet and many people have claimed there psoriasis disappeared.people trying to losell weight by the way and this was just a positive side affect ☺.even if it works to clear up a bad breakout might be worth a go.

eeloe

I've heard of itching as a reaction alright.

How bad was/is your psoriasis?

I've searched a few places, and everyone seems to sing Stelara's praises....it's usually around the 6 week mark you start getting clearance.

We'll see what happens, but i'm gonna stay positive.

Misguided1

I have had 2 shots of Stelara and am a little underwhelmed to be honest.
I've experienced terrible itching, my arthritis the worst it has ever been and only slight change in the psoriasis.
I go back to my consultant in October but unless there is a big change between now and then, I'll be asking for something else.

Hope you have a more instant response eeloe or maybe I just need to be more patient but Enbrel cleared my psoriasis within a few weeks. Unfortunately it just stopped working for me.

brevity

eeloe wrote: »

should i get that BEFORE or after i start?

Doesn't really matter.

eeloe

should i get that BEFORE or after i start?

Gael23

brevity wrote: »

Make sure to get your flu shot

They aren’t out for another week but yes that’s really important.

brevity

Make sure to get your flu shot

eeloe

So it's been a fecking hell of a long road, from referral to now.

But i have my first shot of Stelara in hand, it's in the fridge, my GP's going to administer it tomorrow at 10:30am.

Is this it? is this the end of my psoriasis?

eeloe

Prof.Kirby just called....all bloods are clear, and most importantly, my quantiferon test came back negative so i don't have TB!

Script is coming early next week, so by this time next week i could be on my first shot of stelara!

FECK YES!