Tremfya or guselkumab biological injections

Posted Thu 17 Jun 2021 10.19 by Matt1972

Hi Is anybody on this biological treatment. Looks like I am starting it soon , and wondered how others are finding it. Is there anyone on this forum who has been on biological treatment for several years and find its still working really well. Thanks

Posted Mon 21 Jun 2021 01.35 by Yacht

Some studies suggest guselkumab has around 73% chance of 90% psoriasis clearance (PASI 90). This makes it one of the most effective treatments right now. Seems to be fairly well tolerated and there don't seem to be any (bad) "black box" side-effects so far. As with all biologics, once the injections stop, the psoriasis may well return. Derm can advise, etc.

Posted Mon 21 Jun 2021 13.36 by Matt1972

Cheers for the information. Hopefully will see a difference once it kicks in.

Posted Wed 23 Jun 2021 19.13 by JuneK

Hi, my other half is on Amgevita injections every 2 weeks, his psoriasis was very severe. He tried Cyclosporine and Skilarence tablets. He had to stop Cyclosporine due to poor blood results, The Skilarence was ok but it was tough with stomach cramps. Since being on the biological injections he is 100% clear and it's changed his life. He now wears shorts and short sleeved t shirts for first time in years. Side effects seem to be occasional muscle aches and cold feet and hands, but he says it a small price to pay. He has had Covid vax without any problems too.

Posted Fri 29 Oct 2021 14.07 by Matt1972

Unfortunately this has not worked for me. After three injections my dermitologist has decided its not cleared me enough. It was a surprise to her, as it is considered to be very good in General. So I am about to start on secukinumab instead. Hoping this will improve my skin

Posted Tue 8 Feb 2022 20.53 by Jenora

Tremfya …???? Hi. I’ve just had my first jab Pleasantly surprised that I’ve at present , got no real side effects that’ worry me. Early days I know !!!! I’ve been on pretty much every drug over the last 35. Each one hated my body .. horrendous side effects in so many different ways. Fingers crossed this time around … Anybody out there currently on this drug. ?? X Ps. Fatigue is always a problem right ??? Drugs or no drugs !!??? And now Losing my toe nails too But. I may be find a little confidence this time around ….🤞

Posted Fri 11 Feb 2022 13.36 by Matt1972

Hi jenora Hopefully that will work for you very well. Came off tremyfa, and been on cosentyx or secukinumab since. On both injections i have had no side effects, not even fatigue. Nothing like the nauseau I had whilst on tablets. Results been fantastic. I just have a few pink bits where the largest amount of p was on my body. Mainly on my legs,elbows. no flakiness at all. Been to see dermitologist today, and told that I will get a phone meeting in 6 months and just to continue on the injections. Basically let them know if anything changes. I would say to anyone struggling that the injections are worth trying. It has taken me 5 years to get to this point, as you are made to do the tablets first. So it's a long haul. Hopefully this will change, as in the long run it must work out cheaper...

Posted Tue 8 Mar 2022 15.11 by Denise B

Hi I am on Tremfya injections and my skin is the best it has been in years. I don’t have the same amount of side effects that I had with methotrexate either. However I do suffer with cold sores quite a bit. In March 2020 my consultant took me off methotrexate because of covid and it being an immune suppressant. I ended up with 80% of my body being covered in bright red psoriasis and was in terrible pain. I can not believe the difference tremfyr has made to my life. So happy with it

Posted Wed 9 Mar 2022 22.54 by Matt1972

That's brilliant. I am at a good point myself. Actually gonna wear a pair of shorts now. Was covered in p a couple of years ago. at the moment clear. I itch a bit but that's it and the injections don't make me sick. It's been a long trek to get to this point but I would say to anyone in pain to stick with it

Posted Mon 27 Mar 2023 13.17 by MacDeeRoadrunner

I had severe psoriasis on my scalp as a child and back then the "treatment" was to scrub with a brush until it bled and then slather some unguent of some sort on the scalp then wrap the head with saran wrap. Needless to say this didn't go over well with my 5 year old self. Fortunately things cleared up on their own and over the ensuing decades I would get mostly scalp flare ups and some spots in my beard that could be "managed" with a coal shampoo and cortisone creams and of course sunny vacations and sea water. When the pandemic came along by immune system went into overdrive and I had flare ups in places like never before, shins, thighs, rib cage, chest, forearms and the worst scalp case in memory. I went through all the creams, lotions, unguents and shampoos with zero success when finally the dermatologist recommended Tremfya. It has been an absolute miracle. All skin psoriasis has cleared up and my scalp improved by about 85% within 10 days however there has been a slight remission to my scalp but it is still about 75% better than when it was at its worst. I took the second injection about a week ago and see no improvement yet but the full effect is not expected until the 4 month mark. It was a bit of a process getting medically approved for the injections but well worth it and the manufacturer is giving it to me for free under their compassionate care program. I am very hopeful to see what the next 2 months bring. :)

Posted Tue 28 Mar 2023 16.33 by swanny

Hello, just echoing what some have said above. As I've just posted in a different forum, I suffered from severe psoriasis for years and after several rounds of PUVA, UVA, I went through the usual series of drugs: methotrexate - horrible experience, didn't affect the psoriasis much, but I could hardly get out of bed. It did get rid of the psoriatic arthritis though. Acitretin - did nothing except make the skin peel off my lips in strips and my face go red. Then I got onto biologics which really worked. First Stelara, about an 80% reduction, but I felt crap all the time. Then Humira - about an 85%-90% reduction, but headaches all the time and then after a while felt like I had mild flu. And then I went on Tremfya, which has been an absolute miracle for me: 99% reduction in psoriasis and after several months, zero side-effects. For the first time in my adult life I experienced what it was like to be 'normal'. I thanks the inventors of it on a daily basis. I have been on Tremfya for 3 1/2 years now and it's stil working really well. Good luck, I hope it works for you.

Posted Sun 16 Apr 2023 21.50 by Tess

Hello, I’ve been on Tremfya for almost a year now,. My psoriasis completely cleared up after 6-8 weeks even on my lower legs and scalp which previously had never happened. My nails still aren’t great but that’s a small thing. From about the six month mark, I started to get cold sores frequently, developed a dry cough that comes and gos and generally feel unwell - like I’m always on the verge of catching a cold.. I feel these symptoms are definitely related to Tremfya and wonder if anyone else has experienced similar? I love having clear skin and am reluctant to come off it. I am meeting my dermatologist this week to discuss, and would be delighted if anyone has any insight to share. Best of luck to everyone on this treatment.

Posted Thu 27 Apr 2023 17.13 by VARSHA P

Hello Everyone Really pleased with some if replies that injections are working. Just wanted to ask if you all been treated by NHS? Or private? Currently using Tacrolimus creame but now it seems like its not working anymore like it did before. Having appointment with Nhs next week. So do they start with oral medication? As have heard that methotrexate have side effect like hair loss. Or they can start with biologics which have less side effects. Please guide me.

Posted Mon 1 May 2023 16.26 by lizziep (edited Mon 1 May 2023 16.28 by lizziep)

the NHS usually makes you try methotrexate, or cyclosporin or PUVA before you have biologics. Some people on here from have been happily on methotrexate for years - it didn't agree with me. but I knew immediately. I favour skilirence which for me is a wonder drug - but I had to have failed at other things first. You won't want to be on them privately, though as the drugs would be very expensive.

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