Stelara 16 Months On.

[Fred]

Hello Tracey and

Stelara is usually 12 weeks between shots, so be prepared for them to say they won't give you shorter time between until you have been on it a while. They are more willing to give a bigger dose for over 100kg. I recently tried it but have gone back to one shot at 45 mg over 10 weeks as I felt it was making me feel to tired. I personally think 8 weeks between shots of 45mg would be the best as like you say it does drop off. My dermatologist has said we can look at 8 weeks after trying 10 weeks for a couple of tries.

You haven't bored me with your post, it helps to share.

Please keep us informed as it helps others.

[Treatilicious]

ty fred for the welcome

i am on the higher dose, 90mg every 12 weeks! i shall be mentioning it when i see them, as i am on first name terms with them all down at the hospital after 6 years, they do seem to listen!

will keep updating, as and when, but right now, i could rip the skin off my legs! so i will assume my sleeping position of laying across the bed, legs hanging out to keep them cool and quilt up round the rest of me!

do you find that certain foods/additives give you a reaction since you had the psorasis? i find my hands swell and itch like crazy - to the point of making my fingers bleed, itchy palms too

xx

[Fred]

Oh I know that feeling hanging your legs out then waking up cold.

I must admit I have given up trying to work out what causes a flare up apart from this: Full Moon Syndrome ! Though I do know if I'm wound up about something it gets worse.

Regards food and additives again I have given up trying to work it out, as one day I will think it's alcohol then I stop drinking and no difference. I gave up smoking no difference. Maybe it's the tomatoes, maybe it's the gluten, maybe it's the polish, Etc Etc. I'm feeling and getting older these days and just want to enjoy the rest of my life, Stelara at the moment is helping me do that.

For me the biggest problem is Psoriatic Arthritis, I don't care no more what I look like although it's great to be almost clear thanks to Stelara, it does help with the positive attitude which is a huge benefit and I'm just happy that at the moment It's also helping with the PA and I can move around. ok maybe not dancing but it works for me.  

Night Night

[Fred]

Hello everyone time for an update one month on from my last shot of Stelara and all is going well. 1 shot is definitely better than two for me at the moment, not feeling so tired and the zombie feeling has gone. Although feeling a bit stiff today but that's down to the rain clouds we have at the moment

I thought I would also share with guests a photo I have posted in the members photos section.

This is the best my hand has looked for over 30 years! I don't have a before photo, but a couple of years ago my wrist had plaques of all sizes, my knuckles were bleeding and some was so inflamed with PA that I used to refer to them as Radishes. The nails were yellow and full of ridges, and the thumbnail had lifted from it's bed and almost disappeared.



Hope this thread is helping someone out there, don't forget members can subscribe to this thread and others. they can also start their own threads to share with others.

[Fred]

Got an appointment with my dermatologist on Wednesday, it's the end of week ten from my last shot, And it's not looking so good. I haven't checked my psoriasis score for a while and it's gone up from 7 to 17.

Main problems are psoriatic arthritis, plaques on lower legs, and my toes have flared up. Can't think of anything that has wound me up lately that should have caused a flare up, so it looks like the Stelara is starting to let me down.

Will report back after my appointment.

[Fred]

OK had my appointment today, and we have decided to come of Stelara. After speaking with my dermatologist we both agreed that it's just not working like it used to. It's been exactly two years since starting Stelara and I must say it's been fantastic!

It worked great for the psoriasis, and although not brilliant it also helped me cope with psoriatic arthritis. But like I have found in the past with any treatment there comes a time when it just stops working. My Psoriasis score has shot up lately and is now at 17. plaques have appeared on the front of the bottom half of my legs and they are getting worse by the day.

Over the period of two years I would score Stelara 10/10 for clearing my skin and 7/10 for helping with psoriatic arthritis. If you are thinking of trying it to get your skin clear I would highly recommend it as my skin has never been so good. But like everything else I've tried, it just doesn't remain effective.

So it's time to move on from Stelara. I will be making a new thread about where I'm going from here but it involves getting my Psoriasis Score even higher. (Yes I did say higher)

Started a new thread about what's next here: I need more Psoriasis

[Fred]

If you are looking for new posts on this thread I have moved them to a new one here: Questions about starting Stelara

I will lock this thread to save any confusion.

If you still want to follow my time on Stelara I started a new thread as I didn't go onto the trial Stelara round two