Starting Xeljanz

Anyone?

The only one I know I need to avoid while on Xeljanz (from the leaflet in the box) is grapefruit and grapefruit juice.

EDIT: actually I'm reading the leaflet and can't find the mention of grapefruit and grapefruit juice but I definitely read about avoiding it somewhere.

Post Edited (UCyousee) : 6/9/2021 3:52:10 PM (GMT-6)

Thank you.

Started Xeljanz 6/13/21. My GI started me out with 5 mg in the morning and 5 mg at night.
I see most people start out on 10 mg in morning and 10 mg at night.

So far, still very loose/watery…no blood…Averaging 6 to 8 times a day.
I typically struggle most early in the morning.

No impact yet from the Xeljanz as far as I can see.

No side effects.

I will keep you guys updated.

Post Edited (Rusty Barr) : 6/14/2021 7:14:54 AM (GMT-6)

Hi Sarah. No idea. He confessed they (the team of GIs he is a part of) don’t have much experience with Xeljanz.
Does that mean I’m the office guinea pig?
Honestly I’m ok with that. But I’m guessing that is what is going on here.
Also could be that he considers my flair on the mild or moderate side.
Also could be that I am allergic to a lot of drugs. And he wants to walk before we run.

Between me and you. I actually prefer to start on 5 and 5. Because I have read from others here that when they have tried to come off the induction 10/10…and go down to the 5/5…some have had struggles.
And if I can start 5/5 and that works…well…no maintenance adjustment needed.

And if 5/5 doesn’t work. I’m sure I can call him and he will approve me going to 10/5 or 10/10.

Humira was not working any more. He wanted me to go on remicade. I said, “can we try Xeljanz first?” (mostly because of me reading the positive reviews here) and he said, sure.

I can also tell you. It’s very early. I just started the 5 and 5 Sunday morning. It’s early Tuesday afternoon here. But thank you Lord... Last night was the first night I didn’t get up in the middle of the night to do diarrhea …in probably in three months.

I wish you the best. Let’s check in here from time to time.

Post Edited (Rusty Barr) : 6/15/2021 11:09:25 AM (GMT-6)

Ugh. I was just typing. A long “report”. By accident I hit the little movie ad below. And bam. I’m off the page and now I have to restart this post. Argh.

So happy that you are seeing an impact so early rusty! Three days and a response — even tho mild — is a great big step! May your progress continue.

That's great to hear! I am an anxious mess taking this and almost hope it doesn't work so I can stop taking it. I won't know if it's doing anything until I get off prednisone again.

Hi. Texted my GI today. Asking if I should go up to the typical induction 10/10 or maybe even 10/5. I’m going once first thing in the morning. Once or twice at night. I feel like I am on the cusp on remission. But still loose.

It’s only been 5 days on the Xeljanz. Maybe I’ll get there with 5/5 once it gets in my system more. The pro of that would be I would not have to taper. I have read some people do great on 10/10 and then struggle with the taper.

Sarah. Are you taking supplements? Im a 58 year old family man.

I hope the following helps you or perhaps maybe others here…

I’m a huge believer in the effects of supplements and also daily exercise.

I take about ten different things every day, plus a multi. I try and get at least an hour to an hour and a half of light cardio in every day. I like the arc trainer at my gym…supposedly less stress on joints. (I wear a garmin heart watch and try and keep my BPM to between 104 and 130 when I do cardio). Plus about ten to fifteen minutes of stretching every day.

The supplements that are very important in my opinion are 10k of d3 (plus a daily walk in the sun for 20 minutes to a half hour to pick up another 2000 or so every day). 100 of k2. 500 of Ester C twice a day. 30 to 50 of zinc. 99 of potassium. 400 or more of magnesium glycinate. 500 of curcumin. 300 of turmeric.
I also eat 2 mejool dates and 1/2 cup of rolled oats (cooked oatmeal) every morning. Drink 3 cups of decaf green tea every day. And eat 1 activia low sugar 60 calorie yogurt every day.

1 teaspoon of Konsyl powder (mixed in 8 oz water with 1 Tablespoon of Bragg’s Apple Cider Vinegar) every morning and night

There’s more. But these are the essentials in my opinion for overall immune system health.

Oh, and I try and get 8 hours of sleep every night. I probably average 7-1/2…but 8 is my goal. The garmin watch helps me track my sleep as well.

I’m also a huge fan of fasting for 24 hours one day a week…but I can only handle that when I’m in remission for some reason.

THE most important thing in my life is my relationship with Jesus. But I doubt the moderators want me to get into that.

Post Edited (Rusty Barr) : 6/17/2021 7:36:26 AM (GMT-6)

My GI has not texted me back yet about dosage. Sigh.
Still taking 5/5. Maybe it will firm up and I’ll be glad he didn’t text me back.
It’s only been 6 days.

He may be on vacation. Or just super slammed.

1 first thing movement. 1 or 2 times at night. All loose.
Urgency gone.

Of course I want full remission, but I can live like this.

Sara14,,,,u say u were a runner but are now in pain even if you walk...what kinda pain are u getting? is this stomach related or joint related?

That could well be enthesitis. Especially if you are not seeing swelling. The spasms relate to weakness of the tendon at the connection to the bone and as a result the muscle cant take the normal load and the fibres spasm like crazy.

Husband has been on Xeljanz for 5 years. At that time, the induction dosage was 10 mg twice a day (total 20 mg). Was in full remission within 6 months and has been good ever since. When he tried to taper down a few years ago following news of increased risk for thrombosis, symptoms started and he immediately went back up to 20 mg. Has been there ever since. May try to taper down again.

Has eaten everything without any obvious side effects, including grapefruits, though after the discussion on this thread, we called pharmacist. The drug sheet on Xeljanz says to avoid grapefruit juice since it could "strengthen" the drug, i.e., cause more side effects. So far that hasn't been the case but we have annual appointment with GI in a few weeks and will ask the same question. I'll post with any information.

Good luck with this one.. The good news is that you'll know it's working pretty quickly. It was a game changer for us and hoping it stays this way forever.