Tremfya - side effects?

[Swannieq]

Hi, I’m a newbie to these groups so I’m hoping that I post this in the right area. I’ve had psoriasis probably 50 years now and I think I’ve had every treatment known to man. Right now I am taking Tremfya and I am almost 100% clear.   I also had fabulous results with Stelera, but my dermatologist said Tremfya is even better. However I did my third shot a week and a half ago and I’ve had diarrhea now for nine days. I have had some lab tests done and I’m waiting for the results.  I’m thinking that this may be a side effect of Tremfya as diarrhea is listed as one of the top side effects. Is anyone else experiencing anything similar?

[Fred]

Yes you're in the right area.  

I've not used it myself but you are right it is listed as one of the problems to watch for: Tremfya (guselkumab)

It's also noted the same with Cosentyx, but I haven't had any problems. Not that that helps answer you question.

Diarrhoea for 9 days isn't good. Make sure you drink plenty of fluids, or preferably chicken stock.

We do have a few other members using it but it's still early days at the moment, but I'll give it a Tweet and I'm sure Jim will put it in his newsletter.    

Welcome to Psoriasis Club by the way.  

Fred.

[Swannieq]

Thank you, Fred. I am being very careful to stay hydrated and I’m staying on a very bland diet for the moment. Yuck, but necessary. :-)

[Fred]

Thank you, Fred. I am being very careful to stay hydrated and I’m staying on a very bland diet for the moment. Yuck, but necessary. :-)

Good luck, I hope it passes. But please do keep this thread updated as your input may help others.

[jiml]

Thank you, Fred. I am being very careful to stay hydrated and I’m staying on a very bland diet for the moment. Yuck, but necessary. :-)

Hi again Swannieq I’m with Fred and hope it passes and doesn’t mean you have to stop Tremfya as it’s done a great job of clearing you ... often side effects pass as your body learns to accept the new drug.. let’s hope that’s the case for you

Yes I will add your thread in the next newsletter   and thanks for subscribing  

[ImtheIinteam]

I'm on Tremfya and get a little sniffly for 3 days afterwards as if I'm going to get sick, but I don't. If it's an indirect side effect, meaning that it's throwing off the balance of bacteria in your gut since it weakens your immune system, probiotics may help, and maybe some natural supplements like oil of oregano or mastica that kill bad gut germs without affecting your psoriasis like some medications might.

[Swannieq]

IntheIamteam, very helpful response, thank you so much.  The doctor did confirm that all test results are negative so it seems reasonable that this may be due to Tremfya.  Obviously, there is no way to tell for sure. I am going to do my next dose in a month and a half and see what happens.  In the meantime, I have planned to do the probiotics,  but I did not know about the supplements. That is definitely something to consider.  Has Tremfya been successful in managing your psoriasis? I’m thrilled to say that I’m almost completely clear. I was probably about 95% clear on Stelera, but this took care of those few  stubborn  spots that would not go away.  Thank you again for your response! Swannie

[ImtheIinteam]

It started working right away--red areas became paler--but I think I'm allergic to the cleaning agents at the hospital where I work.  My psoriasis gets better over the weekend and starts right back up about 8 hours into my shift on Mondays. So no, I'm 2 weeks away from my 4th shot and I'm only minimally better, even with adding Protopic ointment on days that I work. Part of the problem is that I'm zinc deficient but my skin doesn't tolerate it at all--even eating oysters or pumpkin seeds makes the psoriasis worse, and high zinc levels is the only commonality between those foods.

[Swannieq]

ImtheIinteam,

You have some real challenges and I'm sorry to hear that.  I hope you find solutions.  I d  feel very fortunate that after all these years I am finally pretty much clear.  I wish everyone could experience that!  I wish you the best.

[Kabob123]

I have been taking Tremfya since January,  so far other then some minor stomach issues after the first shot I haven't had any side effects.   Psoriasis is basically gone.    Psoriatic Arthritis is also better, some pain in fingers/toes and that is about it.  This is coming from some days barely able to function due to hip/back pain.   And other days where shoulder pain was so bad I couldn't lift much.  Obviously this was during some really bad flare ups but I am able to workout as much as I want, workout etc.  Also because I am pain free I dropped 30 pounds since I am able to go to gym and not sit on the couch in pain feeling sorry for myself.