Tremfya

Posted Tue 19 Sep 2023 16.42 by Kirstmcp

Hi, I had my first Tremfya injection today, much larger and slower to administer than the Amgevita I was taking previously. I was just wondering if anyone else was on it and how long it was before you started to see any effect. Official guidance says 16weeks but surely there must be a creeping change before that. I had lichenoid reaction whilst on Amgevita which never resolved and currently my skin is the worst its ever been PSI 2o,2 - hard to be hopeful but I need Tremfya to do something otherwise I'll be going to my sons wedding in a full length, long sleeved smock.

Posted Sat 23 Sep 2023 01.27 by Stan

Hi Kirstmcp, I've been on Tremfya for over 2 years now. I've got guttate, so lots of little spots pretty much all over. I'm sorry to say for me it is not the miracle cure, thats not to say its not going to be for you of course, fingers crossed for you. It keeps my psor down and manageable but doesn't rid me of it. Its very convenient with a 12 week self injection cycle and from memory after the loading dose and second injection there was a noticeable improvement for me. All the best Stan

Posted Thu 16 Nov 2023 01.14 by Kirstmcp

Just posting update (for myself to look back on and for anyone else starting Tremfya) Approx 8 wks in and my skin is light night and day. Really noticing difference by about wk 6 (2wks following 2nd injection) and now practically no active psoriasis at all. Biggest issue has been trying to repair skin barrier and moisturise enough. No real side effect either, felt bit out of sorts first two weeks, headache, bit nauseous then nothing significant after that. All good here!!

Posted Wed 2 Oct 2024 21.56 by Bev

Hi I am 10 weeks in with tremfya not much clearance for me. I have plantar palmar psoriasis. From two days ago my big toe skin has fallen off and its very painful as its a few layers of skin gone. It is agony trying to walk My joints are really sore and i am very chesty with sores in my nose and ears. Thanks Bev

Posted Wed 15 Jan 2025 16.21 by Geraldine

I changed from Stelara to Tremfya in July 24. Dose 1 then dose 2 @ 4 weeks then @ 8 week intervals. Skin was perfect with Stelara and remains so on Tremfya. My issue is really painful joints. Became noticable after injection 3 (12 weeks) and has got steadily worse affecting more joints as time goes on. I am not convinced it is a "bone" issue as it seems to move about - bizarre as that might sound. Has anyone else had started to have joint issues after taking Tremfya? I notice Bev above has, and hoping she will respond. Its really getting me down now as I had no issues with joints prior to changing and now I am like an old woman

Posted Wed 15 Jan 2025 21.31 by Bev

@Geraldine Hi , I have osteoarthritis mainly affecting my right knee. When i started Tremfya my knees , ankles and elbows were aching and I was miserable. I stopped the Tremfya as I couldn't handle the pain and it really didn't help my psoriasis at all. I was due to take it on New Years day I am waiting on an appointment to start a new one. They asked me to carry on past the 16 weeks . Try to Uddermint its a natural anti inflammatory. I was told that this drug can cause joint pain as a side affect but helped Psoriatic arthritis . Beverley x

Posted Thu 16 Jan 2025 10.07 by Geraldine (edited Thu 16 Jan 2025 10.07 by Geraldine)

Hi Beverly Thank you so much for responding. I had absolutely no issues with Stelara, although I was receiving it off licence @ 8 weekly injections. I am exactly the same, particularly knees and elbows just aching. I have always said that I never had any psoriatic arthritis issues, and I believe this to be the case. My current thoughts are to switch back to Stelara - don't know if you have tried that? Hope you get sorted soon - its a damn pest, but at least we have moved on from tar baths :-)

Posted Thu 16 Jan 2025 11.30 by Bev

@ Geraldine. Now Tremfya is out of my system I only really have my right knee pain. I do have fibro but its different pain altogether. Only way i could have described the pain on Tremfya was it was like someone was playing a game of operation on my joints. As far as I'm aware my next one is Taltz just waiting on an appointment. I am new to the world of biologics lol. Why were you taken off Stelera ? Beverley x

Posted Thu 16 Jan 2025 12.38 by Geraldine (edited Thu 16 Jan 2025 12.41 by Geraldine)

@Bev, no reason for coming off Stelara for Tremfya other than it is more modern and supposed to be better. I had no issues with it at all and had been on it for around 10 years My joints are just sore, they ache, in particular when I try to do something eg bending knees, but then it feels like it could be ligament rather than bone. Before Tremfya I was doing weighted squats with a barbell which I could not do now. Sometimes I cant even sit without having to lower myself down. Did you find it worse just after your injection? Around 3 days afterwards my knees seem to be at their worst, improving a bit - but still aching - towards having the next injection

Posted Thu 16 Jan 2025 13.23 by Bev (edited Thu 16 Jan 2025 13.23 by Bev)

@Geraldine .. yes absolutely first 3 or 4 days i was fit for nothing. Every joint hurt and i was miserable. Getting in and out of a chair was awful. I actually remember getting off a bus and actually thinking i was gonna go face down and felt like i was going to vomit between the pains in my knees and my ankles. I stupidly agreed to stay on it past the 16 weeks then a few days later my skin flared as bad as ever . I rang left a message i wasn't continuing. Beverley

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