Psoriasis

Gael23

eeloe wrote: »

I was told recently when i start it(won't be starting it now) that i would be getting bloods done every 3 weeks.

Has the plan changed? Pm me if you want

eeloe

Still no call back!

At the same time I don’t wanna be hounding the man calling him myself....

What’s an acceptable period to wait before calling?

eeloe

Got called back!

Have to get a TB test done, and wait for my toe to heal up, but i'm going to be starting on Stelara in a few weeks(hopefully the toe is healed up quicker)

Anyone else on Stelara who can gimme any advice?

Mountainsandh

Brilliant, fingers crossed for you Eeloe !

eeloe

Thanks!

Hopefully this will sort things out. Still a bit nervous about going on biologics, but it has to be done!

Gael23

So its either Humira or Stelara for me next. Not sure which to chose, Stelara sounds amazing but part of me is saying go with Humira and still have Stelara to fall back o.

fionny

Tell me more about Stelara, I have plaque psoriasis which is persistant, Enstillar helps some but if I park it for a bit it comes back with a vengance.
Stelara is an injection treatment right?

Is it worth try Stelara or asking the doc at least? Also is it a drug for life then or just for a period?

qo2cj1dsne8y4k

4 weeks on mexothrexate and I’m getting pains where I never got pains before. My entire body aches as if I’m getting the flu, my knees are killing me but my skin has never looked so good. I was certain I was getting the flu but it hasn’t progressed anymore than a headcold except for the aches. The dr did say it can take up to three months to notice an improvement, but I didn’t expect to feel worse before feeling better.

eeloe

fionny wrote: »

Tell me more about Stelara, I have plaque psoriasis which is persistant, Enstillar helps some but if I park it for a bit it comes back with a vengance.
Stelara is an injection treatment right?

Is it worth try Stelara or asking the doc at least? Also is it a drug for life then or just for a period?

I’m starting in a couple of weeks, it’s an injectable biologic. 1 shot at week 0, one shot 4 weeks later and then every 12 weeks after that.

The doctor can’t prescribe it, only a consultant.

eeloe

Grace Thoughtless Mortal wrote: »

4 weeks on mexothrexate and I’m getting pains where I never got pains before. My entire body aches as if I’m getting the flu, my knees are killing me but my skin has never looked so good. I was certain I was getting the flu but it hasn’t progressed anymore than a headcold except for the aches. The dr did say it can take up to three months to notice an improvement, but I didn’t expect to feel worse before feeling better.

This is what really put me off going on MTX again.

I really hope these side effects subside for you soon!

fionny

eeloe wrote: »

fionny wrote: »

Tell me more about Stelara, I have plaque psoriasis which is persistant, Enstillar helps some but if I park it for a bit it comes back with a vengance.
Stelara is an injection treatment right?

Is it worth try Stelara or asking the doc at least? Also is it a drug for life then or just for a period?

I’m starting in a couple of weeks, it’s an injectable biologic. 1 shot at week 0, one shot 4 weeks later and then every 12 weeks after that.

The doctor can’t prescribe it, only a consultant.

Will await to see your results,

Mind me asking what type of psoriasis you suffer with and scale? 

Reason I ask is I reckon consultant wouldnt deem me suitable as only on my arms, legs and bits on scalp and a bit elsewhere also

eeloe

I have quite big plaques on my calves, spots on my thighs and feet, spots on my trunk(chest and back), two large patches on each elbow, and spots on my forearms and upper arms in and around my ears and scalp.

Not as severe as others but to me it’s the absolute worst.

0lddog

Grace Thoughtless Mortal wrote: »

4 weeks on mexothrexate and I’m getting pains where I never got pains before. My entire body aches as if I’m getting the flu, my knees are killing me but my skin has never looked so good. I was certain I was getting the flu but it hasn’t progressed anymore than a headcold except for the aches. The dr did say it can take up to three months to notice an improvement, but I didn’t expect to feel worse before feeling better.

I had this when they bumped the dose up to 25mg/week


After a couple of weeks it was to much & they agreed to a reduction. Its been business as usual since

Billy86

I dont have psoriasis but I do get eczema on my chest and neck quite bad at times which is quiet similar. Anyway last week the girlfriend made me some mad mix of oatmeal and uhhh... stuff that was every but as effective as Betnovate (prescription steroid cream) in getting rid of it when soaked in a hot bath.

Might be of no use to anyone here but I can get what else she put in it if people would like. All standard household items if I recall. I'm still flummoxed by how effective it was, almost instant too.

eeloe

I’ve heard about this oatmeal baths.

Get us the recipe there billy, sound!

rizzee

I wouldn't mind the recipe too, no harm

Gael23

fionny wrote: »

Tell me more about Stelara, I have plaque psoriasis which is persistant, Enstillar helps some but if I park it for a bit it comes back with a vengance.
Stelara is an injection treatment right?

Is it worth try Stelara or asking the doc at least? Also is it a drug for life then or just for a period?

You will need to try other things before you get biologics. They are incredibly expensive so a bit of a last resort. It’s not a drug for life as such but when you see the results there is no looking back

Mountainsandh

Grace Thoughtless Mortal wrote: »

4 weeks on mexothrexate and I’m getting pains where I never got pains before. My entire body aches as if I’m getting the flu, my knees are killing me but my skin has never looked so good. I was certain I was getting the flu but it hasn’t progressed anymore than a headcold except for the aches. The dr did say it can take up to three months to notice an improvement, but I didn’t expect to feel worse before feeling better.

Mtx side effects can be tough alright. It's worth it if and when it does work though, hang in there!

I want more. My dose is light and it's just not enough. Seeing the rheumy mid September thankfully.

Gael23

I’m leaning to Humira over Stelara. Stelara I’m told is the newest one out there so I’m thinking I should keep that in reserve for the future.

qo2cj1dsne8y4k

Mountainsandh wrote: »

Mtx side effects can be tough alright. It's worth it if and when it does work though, hang in there!

I want more. My dose is light and it's just not enough. Seeing the rheumy mid September thankfully.

Last night was my first dose at 20mg, I didn’t realize that it would be increased monthly. Feel okay, but nauseous but not too bad. Sneezing back again though so maybe that’s just a little side effect with this medicine. All things considered I thought this would be way worse

eeloe

Gael23 wrote: »

I’m leaning to Humira over Stelara. Stelara I’m told is the newest one out there so I’m thinking I should keep that in reserve for the future.

Might be an idea to save it for a later date if you have another option.

At the same time, injectioning every 12 weeks, try that for a while and if it doesn’t work out go back to humira at 2 weeks?

Mountainsandh

Grace Thoughtless Mortal wrote: »

Last night was my first dose at 20mg, I didn’t realize that it would be increased monthly. Feel okay, but nauseous but not too bad. Sneezing back again though so maybe that’s just a little side effect with this medicine. All things considered I thought this would be way worse

I'm on 15 mg weekly the whole time, didn't increase.

I have to complain more at the rheumy, I'm stupid, I just go in all grateful for the bits of improvement, and not really highlighting the failings.

I'm glad you're getting better.

Billy86

eeloe wrote: »

I’ve heard about this oatmeal baths.

Get us the recipe there billy, sound!

rizzee wrote: »

I wouldn't mind the recipe too, no harm

She's been hiking up and down the Scottish highlands this weekend and lost her phone charger so I only caught up with her now but I'll try to grab it off her in the next few days if possible (she flies back to Canada in a few days from the UK, my permanent residency for Canada is pre-approved and I should have the physical documents within the next 6 weeks or so, so hopefully I can get it off her over FB or whatnot).

Just to be clear though I don't get eczema as bad as some here seem to get psoriasis, but do get it bad enough to go a good few layers below the skin so that even the fabric of a t-shirt stings a lot. So here's hoping it works for you guys, or at least helps a little.

Gael23

eeloe wrote: »

Might be an idea to save it for a later date if you have another option.

At the same time, injectioning every 12 weeks, try that for a while and if it doesn’t work out go back to humira at 2 weeks?

I was sort of thinking the other way about it. I know Stelara will work but I’m feeling I should try and see if something else works first. I inject weekly at the minute anyway.

eeloe

Gael23 wrote: »

I was sort of thinking the other way about it. I know Stelara will work but I’m feeling I should try and see if something else works first. I inject weekly at the minute anyway.

Yeah I guess I get what you mean now, instead of trying something you know will work, try something else to exhaust other avenues.

waxmoth

Gael23 wrote: »

I’m leaning to Humira over Stelara. Stelara I’m told is the newest one out there so I’m thinking I should keep that in reserve for the future.

Stelara (Ustekinumab) has a different drug target (il 12/23) than the other current biologics including Humira (Adalimumab) which target TNF alpha. The anti-TNF ones are being associated with sometimes causing IBD whereas this has not been found so far with Stelara and in the linked case seems to have resolved it and psoriasis for the duration of the study. https://onlinelibrary.wiley.com/doi/abs/10.1111/bjd.15631

Chacha97

Hey just wondering does anyone have any suggestions for some sort of everyday loition to use generally for the body or a face moisturiser suggestion? Suffer a bit from plaque and scalp psoriasis so have the steroid treatments but don’t want to be dependent on them thanks

rizzee

I use Nivea Sensitive Face Moisturiser once a day. Then once or twice a day I'd go between Vaseline Aloe Vera Cream and I recently got the new Vaseline Cream for extra dry skin. Then in showers I'd lump silcocks base all over me then wash it off in there, Elave shampoo too and then once a week I've gone back to using Nizoral. In between this 2 - 3 times a week i'd dab some dovobet on me in patches.

Chacha97

rizzee wrote: »

I use Nivea Sensitive Face Moisturiser once a day. Then once or twice a day I'd go between Vaseline Aloe Vera Cream and I recently got the new Vaseline Cream for extra dry skin. Then in showers I'd lump silcocks base all over me then wash it off in there, Elave shampoo too and then once a week I've gone back to using Nizoral. In between this 2 - 3 times a week i'd dab some dovobet on me in patches.

Perfect thanks for the suggestions really appreciated! Always got confused for lotions for everyday use,

rizzee

No harm giving it a bash, everyone is different It has definitely helped since I had my 2nd round of light therapy over 2 years ago. I don't think getting tattoos did but sure that's my own fault