Long term effects of Stelara

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Posted Wed 26 May 2021 11.21 by Simon Hastings (edited Wed 26 May 2021 14.44 by Simon Hastings)

Dear fellow sufferers, I hope you are are well? I have not posted for a while after lengthy discussion with Sizzy in the past. How are you Sizzy? For Senol, I would say that Stelara has been a wonder drug for me. I was covered in psoriasis since my 20's until Stelara got rid of all of it! I stopped during covid. I should have had my injection in May 2020, but have still not had it. For 6 months I still had no psoriasis, and it has taken until now, to start getting bad. But now I have had my 2nd vaccination, I am re-starting Stelara this Friday, which is exciting. Having been off Stelara for so long, I feel I can say that my immunity has been much better. I have had almost no illness during that time. The bad knee turned out to be a torn meniscus, which I have had operated and my knee is almost fine now. I also wonder how much of my previous bouts of sickness was caused by Stelara and (given what we now know) how much by my chronically low vitamin D levels. I now take lots of that, and lots of other supplements, to boost my immune system, so I am hoping that I can re-start Stelara without too much of a toll on my immune system. Fingers crossed! Enough about me. The point is Senol, for the right patients, Stelara can change your life! I am happy to start it again, as it gives me the life of a non-psoriasis sufferer, which is amazing. Best wishes, and keep well, Simon

Posted Wed 26 May 2021 14.26 by Şenol Karayılan

Dear friends, Simon, I am about to starting Stelara next week after necessary tests as I decided to use it. Hope I can share good news with you and one day I can write here “P left me” Loves Senol

Posted Wed 26 May 2021 14.45 by Simon Hastings

I wish you well. I hope it works for you, like it worked for me.

Posted Wed 26 May 2021 20.18 by Sizzy (edited Wed 26 May 2021 20.19 by Sizzy)
Psoriasis 40 years, most treatments tried over this time, currently on biologics (stelara) as nothing else work.

Simon, great to hear from you and glad your knee was sorted! 6 months was pretty good going! I've had to delay my injection as had my second AZ vacinne a week or so ago and already my scalp has started to flare and many tiny patches elsewhere. Pretty sure it will almost clear again within weeks of next Sterlara injection. Vit D deficiency is rife in the UK but Dr's do not test for it unless you insist. Its a good idea to take Vit D supplements anyway for that boost. I hope restarting works quickly for you and best of luck with it. Keep well X

Posted Thu 27 May 2021 08.41 by Simon Hastings

Hi Sizzy. Good to hear from you again, and thanks for your message. I guess I was an unusual patient, in the way that my psoriasis remission continued for so many months after I had stopped taking Stelara. I was almost beginning to kid myself that I was somehow miraculously 'cured' of p. But now it's really on the march again, and I can't wait to start treatment. My next anxiety will be wondering if somehow it won't work as well as before. I wish there was more understanding of how anxiety itself feeds into psoriasis flare-ups, as I do suffer from that. If I'm taking Stelara, I'm worrying about potential side effects, and if I'm not taking it I'm worried that somehow I'll return to the bad old days when I was covered in psoriasis and nobody could help me. I need to chill and have faith that the Stelara will work just as well as last time. Best wishes, Simon

Posted Thu 27 May 2021 13.04 by Sizzy (edited Thu 27 May 2021 13.07 by Sizzy)
Psoriasis 40 years, most treatments tried over this time, currently on biologics (stelara) as nothing else work.

Hi Simon, Guys and St Thomas do a mental health form every time we attend clinic to gage people's current state of mind. They understand more and more it goes hand in hand and often have a therapist there on clinic to speak to individuals to see if sessions needed (I got sent there once - known for getting emotional at clinic when skin bad ). It's a no wonder though really, both the disease and the treatments carry risks and like me, you HAVE to go for treatment to have any quality if life! Not treating it properly can result in whole body inflammation, organs and all. Wow, I'm not helping lol x I had a simular thing with Humira when I stopped. 6 months of 'normal' skin tricking me into believing I was cured! What a fool lol. 🤣. Fingers really tightly crossed for you and if you had started eating unpasteurised foods whilst off treatment, 😋 stop now lol x Also, pretty sure this disease makes me a hypochondriac, I get some very strange body sensations all the time! Always think the worse. For the last few months it feels like a band is tied round my tight calf! Very strange 😆 Best of luck and keep in touch re how you get on x
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