Trying Tremfya

General Medications
#1

Hi All,

I took my first Tremfya injection last friday.
This is my third biological. I started with Humira, which didn’t do anything for me.
Then we gave Stelara a go. That did a bit more, but not enough.
In the meantime I changed to another consultant as I didn’t feel the current one was progressive enough.
The new one put me on Otezla 5 months ago, stopped the MTX 4 months ago and started me on Tremfya last week.
So far I have to say that I feel a good bit better.
Initially I still had some pain, a lot of fatigue and extremely stiff. Slowly the pain went away and the stiffness became less. The fatigue persisted for a good while. Mid December the fatigue only became every couple of days. Most days I felt ok.
So, after taking Tremfya I was absolutely fine. Only occasional fatigue and virtually no pain or stiffness!! To say I’m delighted is an understatement :grinning:
I’ll keep ye all posted re progress.
Going on holidays next Monday without pain!!

1 Like
#2

Congratulations! Great news.

Getting rid of pain - fantastic. Less stiffness - fantastic. Seeing off fatigue - it’s like the sun has come out after an especially long, hard winter.

Long may it last and happy holidays!

1 Like
#3

Fantastic sbender! It’s so great when you get a combination that works, isn’t it? :grin::grin::grin:

1 Like
#4

Thanks @Sybil :slightly_smiling_face:

#5

@Jen75
You can say that again!! Long may it last
I’m still shocked to be honest. After living with all these symptoms for so long, i’m nearly afraid to believe it. :grimacing:

1 Like
#6

That’s fabulous - enjoy your holidays!

1 Like
#7

Thanks for sharing your results with your new med. I need to switch biologics and I’ll ask my rheumy about this one. I suffer from great fatigue and would love some relief!

1 Like
#8

@Frances Any luck?

#9

I haven’t discussed with my rheumy yet. So much to deal with:

I’m getting my left hip replaced on Feb 12th. I’m hobbling around.

I’ve also been in bed for 5 days extremely ill and weak - I believe it is a flare up.

I will e-mail my rheumy tomorrow about this new biologic.

How is it working for you?

#10

Oh wow! I hope everything goes smoothly with the hip replacement.

#11

@Stoney

Thanks Stoney!

#12

@Frances good luck with the op!
I’m getting on well with it in combination with Otezla. If you will be able to go on it, I hope it will help you as well as it is helping me!

#13

Good luck Frances. How long will you be in hospital and have you got a good fat book to take with you?

Keep us posted.

#14

So,

Last sunday it was a month since I started with Tremfya, and time to take my second loading dose.
For about 2 days afterwards I had increased joint pain/enthesitis. Also, my fatigue was through the roof. It went as suddenly as it came, and on the third day things were back to normal. My new normal, which is, very little fatigue, tiny bit of stiffness in the morning and hardly any pain (most days pain free).
I have to say that I’m very hopeful that I have hit on the wright combo.
It is great being off the MTX as that made me extremely fatigued and generally cranky as it did nothing for my pain.
I’ll keep ye all posted on further developments.

1 Like
#15

That is wonderful! Those first 2 days must have been rough. But so glad you are feeling mostly pain free now! And kicking the fatigue is so important!

And thanks so much for sharing - it helps to remind us to keep trying new meds if something is only somewhat helping us. I need that reminder right now :slight_smile:

1 Like
#16

Thanks @Ashleykins
The fatigue is one of my worst enemies!
I’m still learning how to pace myself so it can’t get to me.
Still failing on that part. My wife has a better feel for when I’m pushing myself too far than I do.
It happened yesterday, I was doing well and around lunchtime the lights went out! And that on my afternoon off!! spent the rest of the day between the bed and the couch :expressionless:

#17

So glad things are working for you this far. It’s interesting sometimes when we drop a med we realise things are at least nicer without it. I recently had to drop sulfasalazine - never thought I had much if any side effects on it either, it so isn’t like what mxt can do side effect wise. But gosh does my brain feel sharper and my general mood has improved too. Let’s hope though that my body otherwise doesn’t need it.

1 Like
#18

Hi all,

A little update
My pain is a lot better!
The only thing I cannot seem to shake yet is the dreaded fatigue!
Really debilitating and causes me to cancel stuff in the evening!
How is the community fairing with this?

1 Like
#19

Hi @sblender, fatigue is my worse symptom. Have you tried talking to any of your docs about taking a stimulant in the morning? I’ve taken adderall and now I’m taking a narcolepsy med - Nuvigil. I’m also going to talk to my rheumy about taking Plaquenil because someone posted on here that it helped their fatigue. Just some ideas to think about.

PM me if you want to info on how I talked to my docs about fatigue to get them on board to address it.

2 Likes
#20

Thanks very much for your reply @Frances
I like the way you called me blender :joy:
I’m sorry to hear that you suffer from that as well, we both know what that’s like
Those meds you mentioned are definitely worth a line of enquiry.
First I want to see how the Tremfya will deal with that.
I’m only on that for 3 months now. I have had better days without fatigue or only a little. I’m a week away now from my injection and the pains are starting to niggle and the fatigue is back with a vengeance.
It started to get a lot better overall when the rheumatologist stopped MTX, that really made me be exhausted