Stelara - Has anyone tried it?

[Carol36]

Hi All

I will be starting Stelara injections next week and just wondered if anyone else had tried it.  I am used to the injections as i have had humira in the past but i know you all on line can give information & advice the leaflet does not.

Carol

[dboyd]

hey

i am on stelara along with 5mg of methotrexate a week, after trying almost everything else like mtx on its own and humira and infliximab and ciclosporin and all the creams and uv therapy nothing is working.

the best result i had was on infliximab but after a year it stopped working, the problem is that the injections are too far apart. it starts to work for a few weeks but i can only have humira every 3 months and it starts to ware off after about the 5th/6th week then i have nearly 2 months where its flared up again before i can have another injection.

I have asked if the frequency can be more to have it around every 6 weeks but the derm says no because it can cause severe medical problems and they are only allowed to prescribe it every 3 months.

What i find is humira and infliximab does work but you dont get it often enough to keep the P away so it starts to ware off and comes back before you get another dose.

Only side effects i have had are that i feel really tired all the time and sleep loads, loss of appetite and feeling sick lots.

Hope this helps?

Dan

[Carol36]

Hi Dan

Thanks for your message.   I've had my first injection three weeks ago and i'm due another one next week.  You sound much like me and been through all the medication out there.   I can't say my psoriasis has improved but it certainly seems to have stopped it getting any worse.  I am praying that it starts to improve on the next injection.

Take Care

Carol

[juliee]

Hi carol
I'm currently waiting for my 3rd stelara injection.
For me from week 2 have been totally clear.
I've had a few pop up over the last few days but due my injection any day.
I've had no side effects. It's just so amazing to have smooth skin again.
Just hope my derm will keep me on this as so expensive.
My derm has just been to USA to get evidence about long term use with stelara.
Prospects are very good and no hard evidence regarding cancers reported. He tells me this is the
drug he feels happiest giving his patients. But the cost is so high.
Only reason I got it was I'm going to Everest in a few weeks and he said I couldn't go using cyclosporine.
Just hope I get to stay on it when I come back.


Hope all goes well and any questions just ask


Julie

[Carol36]

Hi Julie

how bad was you psoriasis before the stelara?  Mine was pretty nasty and although Humira was the only drug that has completely cleared it up it eventually stopped working.  I am also on 20mg of mtx as well as stelara.  I do not think the mtx is doing anything for the psoriasis but it seems to help my joints as i have pa as well.  While the stelara has halted the psoriasis, it hasn't cleared it up very much but on a positive note the psoriasis isn't as angry or weepy so i can cope better with it.  My second injection is due this week so with any luck an improvement will follow.  I have not had any side affects which is great.

 I guessed the injection was really expensive as there doesn't seem to be too many people on it.  My nurse said I'm the third patient at my hospital to be on it at the moment.  The other two are having mixed reactions.  One is having slight results but the other is clear, she thinks this is because anyone over 100kg gets two injections and as the patient is slightly over he is getting more of the drug.

Everest sounds interesting, what is you reason for going?

Carol

[Panch]

I had my 5th injection last week. My P is much better than when I was on MTX. Still have a fair bit around the waist and spots at various other places. It is a big relief that I don't have the  nasty side effects any more.