Cloud Gate (a.k.a The Bean) in Millenium Park, Chicago. I’m clearly thinking about the Questions about Tremfya included in this PsoHoward blog entry.
This past week I joined the HealtheVoices conferencein Chicago for the fourth straight year. Here’s a description of the conference: “In an effort to connect, support and further empower the online health advocate community, Janssen created HealtheVoices™ – a groundbreaking leadership conference created exclusively for those using social platforms to advocate for themselves and their communities.”
I absolutely love how this conference brings people from forty different chronic disease conditions together to get inspired, connected and empowered. Before the conference started a group of psoriasis advocates joined Janssen to discuss Tremfya (guselkumab). A perfect lead into today’s blog topic.
My psoriasis update is not super exciting. I’m mostly stable, with more psoriasis breaking through than before. I just passed the week 38 mark, about two and a half weeks after taking my sixth injection of Tremfya. I hope to include an unboxing of my new phototherapy light panel that’s slated for delivery at the end of the week. Stay tuned!
In the meantime, I’ve noticed various search terms and questions about Tremfya that have led readers to PsoHoward.com. Below you can find the top queries and my thoughts on each one as I journey with Tremfya.
[Disclaimer: Please note that I am not a medical doctor, nor do I have the definitive answer on these questions. The responses are from what I’ve experienced so far on Tremfya as a patient, or from talking to healthcare providers and a Janssen representative at the Medical Information and Services group.]
How often do you take Tremfya?
The dosing at first was a bit confusing, but didn’t take too long to figure out. I started with a “loading dose” which consisted of Week 0 as the first injection, then Week 4 as the next dose. After those first two injections I was instructed to take it every 8 weeks (week 12, week 20, week 28, etc.).
I recently asked my dermatologist and Janssen about more frequent dosing, perhaps every four or six weeks. Since the label use is for every eight weeks after the initial loading doses, my doctor will need to submit an exception to insurance. I’m not holding my breath.
Does the Tremfya injection hurt?
The first injection caused me some anxiety as detailed in my first Tremfya blog. in years past I used an injection pen with Enbrel. I would press it on the skin (usually my belly or on my leg) and then push the button. The Tremfya injection uses a syringe with a small needle. The injections do not hurt at all. In fact, I can see the needle go into my skin, but do not really feel much as it goes in.
I did use a syringe previously with Enbrel about a decade ago, which prepared and somewhat trained me for Tremfya. The first Tremfya injection I took at the dermatology clinic with a nurse observing. I’m glad I did as I felt safer in case I had any unusual reaction.
Ask about training for self-injection if you are feeling anxious about it at all.
How long before I see results with Tremfya?
This question is by far the most frequent one asked in searches that led to PsoHoward. It’s the question I had foremost on my mind so I’m not surprised. I hated that my health providers told me to be patient. But that’s the truth about many psoriasis treatments I’ve tried: it takes the time it’s going to take.
It makes sense that response rates depend on the individual, although studies and graphs show the overall trends. I started noticing some improvement on my extremities, lower legs and arms, within a few weeks. But my dermatologist told me to wait a bit longer as the data showed response rates coming later into the ten to twelve week time frame. The pharmacist said the same. Around week 8, I excitedly saw a good response, although improvement continued for a few weeks longer before leveling off.
Tremfya (Guselkumab) Week One
3 Weeks with Tremfya: The Waiting Game
6 Weeks with Tremfya: Redefining Expectations
8 Weeks with Tremfya: It’s Working!
12 Weeks with Tremfya: The Third Injection
16 Weeks with Tremfya: The Verdict?
20 Weeks with Tremfya: Read the Instructions! (4th Injection)
24 Weeks with Tremfya: A Pattern Emerges
28 Weeks with Tremfya: Still Working? (Injection #5)
42 Weeks with Tremfya: Coping with a Skin Flare
Does my skin itch with Tremfya?
I don’t have a great answer for this question as my skin always itches. However, I can say that my psoriasis does not itch as much as the inflammation lessened overall on my body. A few new spots broke out along the way that felt itchy, but they faded in a couple weeks like the other spots. I do have a comment about my scalp, though. See below.
Will Tremfya clear my scalp psoriasis?
My scalp itches quite a bit with scalp psoriasis. Tremfya data shows good response for scalp psoriasis, but unfortunately not so much for me. Definitely not as bad as without treatment–no large flakes peeling off my scalp–but not as good as I hoped.
See the Tremfya prescribing informationfor more details about scalp psoriasis from Janssen.
Is Tremfya for eczema?
At first I feared Tremfya caused my eczema to worsen, but I never could substantiate any causal relationship between injecting Tremfya and worsening or improving eczema. Either way, it is not indicated for atopic dermatitis at this time, which means I need to find a different way to treat my eczema.
What do I do if my insurance won’t cover Tremfya?
I hate that when I start a discussion with my dermatologist about a new treatment we invariably talk about insurance coverage. I have faced insurance denials in the recent past for Otezla, and also for a home phototherapy unit. I thought I might for Tremfya as well. Thankfully, insurance provider approved my taking Tremfya, although it took a few weeks for the system at the specialty pharmacy to get it to me because it was new back last summer.
My dermatologist did tell me at the time, though, that I would get the medication one way or another. At that time the manufacturer Janssen provided the medication for a time for certain individuals who could not receive it through insurance.
I would personally go to Janssen’s CarePath Tremfya website to ask their representatives, or to the National Psoriasis Foundation’s Patient Navigator Center with insurance issues that arise.
Does Tremfya give you high blood pressure?
My blood pressure hasn’t elevated that I can tell since taking Tremfya. The Janssen Medical Information and Services representative said that elevated blood pressure is “not something reported or seen in clinical trials or post marketing data.” Certainly something to talk to your doctor about if you have a concern.
Is it okay to take a dose of Tremfya a week late?
The Janssen representative said that it wasn’t studied that way–taking it later than the regular dosing schedule. She said that if you are late, the risk is for the disease to break through. She added the importance of sticking to the interval period as much as possible.
Can I drink while taking Tremfya?
I happen to not drink alcohol, not for religious reasons, but because it flares my skin conditions. Janssen said there is no specific concern or direct contraindication to drinking alcohol with Tremfya, but ask your doctor.
Do you have any questions about my experience with Tremfya not covered here? Feel free to leave a comment or message me and I’ll be sure to respond to those.