Tremfya user's - pros and cons

[Jessica]

Hello. I am posting a broad question but hope some of you can help. I'm now on Tremfya  (after taking all else with no help and got all side effects - mostly upped respiratory infections.)
Psoriasis now is painful psoriatic arthritis and autoimmune issues such as lupus.
I started Tremfya on Sunday. I cannot lift my head from my pillow because of severe exhaustion!. When I do get up I have extreme lower back and leg pain.
I don't want to give up. I'm hoping a second dose in a few weeks will bring clear skin as less pain.  I just want to know if anyone else felt these "side effects" when first taking Tremfya. The nurse at Jannsen had nothing to tell me except I would get a letter from them. 
I'm ending day 3 feeling extreme fatigue, pain and still growing New placque. Not what I expected.
Your help.is appreciated.Thank you.

[jiml]

Hi Jessica and welcome to the club, I am not on tremfya so can't really answer your question . But it seems extreme that you are feeling so exhausted hopefully one of our other members might have an answer but in the meantime read here about Tremfya Tremfya (guselkumab)
I had a quick look in the search facility here and have only  spotted anyone with side effects they have reported
See Side effects with tremfya

Good luck I hope someone comes and can help ...I'll put a note in our newsletter that goes out at the end of the month as well

[Caroline]

Hi Jessica,

At first a welcome to psoriasis club. Very annoying that you are so tired now after your first shot.

We do not have much users of Tremfya yet, but Janssen says that is will go for Psoriatic Arthritis.
Fred is going to start with it soon and River60 I think is one of the first Who started with it, you can read about it in [Group Specific].

There may be more for you to read if you use the search mechanism.

Cheers
Caroline

[Fred]

Hello Jessica  to Psoriasis Club.

First off I'm a bit confused about your treatment "French a"  probably me and it's some modern speak but I don't understand. 

Re Tremfya, I see Jim and Caroline have pointed you to a couple of threads. The one Caroline pointed you to though is hidden from view till you have made 10 posts.

But apart from the threads they have pointed you to I don't recall anyone having the problems you describe. I used to get a similar problem a bit like a flu feeling from Stelara so it could be that, but it does sound worse than that.

You have contacted Janssen and I'm sure they will soon be in touch, so it would be interesting to see what they have to say.

It could be worth you starting another thread in Prescribed Treatments For Psoriasis asking the question as this board is for introductions, and like I said I don't understand your thread subject. So maybe a new thread titled "Exhaustion with Tremfya" will get you some more answers. *But it's your choice.

Please keep us updated as your information may help others in the future.

Regards.

Fred.

[Jessica]

Hello all - I'm sorry that the initial message said French a' - that was an auto correct. The message caption was meant to read "Tremfya pros and cons."
Thank you for your comments and recommendations.

Best,
Jessicalwahl
 3x

[Fred]

Hello all - I'm sorry that the initial message said French a' - that was an auto correct. The message caption was meant to read "Tremfya pros and cons."
Thank you for your comments and recommendations.

Best,
Jessicalwahl
 3x

Aha the dreaded auto correct, Jim's favourite. 

I have changed the title and your profile for you. 

Fred.

[KatT]

Hi Jessica 

Welcome to the club!

I won't be much help as I never took tremyfa but hope it gets better for you and that you find information in the forum.

Keep us posted 

[KyPrincess]

Hello and Welcome to the club.

[Kat]

Welcome Jessica.

Afraid I haven't been on Tremfya either. Was the fatigue present before starting Tremfya? Just wondering if you felt that it was getting worse on Tremfya or if the Tremfya was the cause.

Either way, I hope you start to feel better and get good results soon!

[Jessica]

Now into second full week after Tremfya injection. The extreme side effects have not resolved. My autoimmune disease is in full flare - I took pictures of 3 areas where I had plaque. One seems lighter - heading toward reaction I hope. The other 2 are very red and painful. My scalp has developed new plaque but I know that behind ears and scalp area are "easy" prey for psoriasis. My joint pain is more evident. I never had knee pain but I have it now. My fingers are tingling with pain (joint pain).  I'm extremely exhausted. One person in quiet if fatigue was present before Tremfya. Yes, I have had days where I am tired but the only time I ever felt this level of fatigue was day of and day after methotrexate dosing. This fatigue has me immobilized for most of the day. Still, my biggest concern is the constipation. In a word, OUCH!! I have taken Miramax to help the process but it's really not helping.
So my question of the manufacturer is should I take dose #2? Before that, actually, is there some "antidote" to take when feeling lousy after dose #1.
I'm not getting any real help. I'm hydrating, resting, limiting use of Advil and Tylenol. 
There's my update. Curious if any others using Tremfya have had similar reactions? Did you improve after dose #2? 
Thanks for your help and compassion.
-Jessica