Besides Stelara, Xeljanz may be a viable option for you too. For many people (my husband included), he knew within a week that it was working. 7 years later, it’s still working....
So sorry you are going thru this. Your adrenals will wake up. It will take some time, but an endocrinologist knows how to do it. At some level you will switch over to hydrocortisol which is in your...
It will be 7 years next month that my husband started on Xeljanz, and he still is in remission. He is finally down to 15 mg a day. Started flaring when he tried to go down to 10 mg a day, so staying...
For my husband, endocrinologist procures it from the SpeciaIty Pharmacy and then he goes into the endocrinologist office for the injection. I think there are shelf-life / storage requirements which...
Husband has been on it 6-/2 years, in full remission. Only side effect was slightly elevated cholesterol which has gone down as he has lowered his dosage. He was in 20mg/day for over 5 years and...
My recollection was the doc recommended every 3 years, but it’s been awhile. He has annual GI appointment this September and I’ll update you....
Diagnosed in 2013. Tried remicade, humira and entyvio before Xeljanz, which was the miracle drug....
My husband had colonoscopy about 6 months after he started Xeljanz in 2016. The result showed full histologic remission. Next one was 3 years later. We'll see what doc says at the next visit about...
For what it’s worth, when my husband went from 20 to 10 a few years ago and started flaring (at least, he thinks it was a flare) he immediately went back up to 20 and stayed there for another 3...
Xeljanz was the game changer for my husband. Nothing but prednisone seemed to do anything. Nice thing about Xeljanz was that if it’s going to work, it is pretty apparent within a few weeks. He is now...
Husband stopped taking mesalamine about 2 weeks into Xeljanz. Wasn’t sure it did anything, anyway....
I strongly agree that you should reach out directly to the insurance company. You may be on hold for awhile but usually they try to be helpful. Take super good notes....
My husband has been on Xeljanz for almost six years now and the insurance company still denies it every year and we appeal and it gets resolved. If you want to try the Xeljanz, your doctor needs to...
My husband was 10 days away from surgery when he went on Xeljanz. He had tried remicade, humira and Entyvio. He knew within a few days after starting that it was a gamechanger, and has been in full...
Hello. Johns Hopkins is doing a free study of vaccine effectiveness on COVID antibodies for vaccinated people with IBD. You are eligible if you haven't had your booster yet. Apparently you get...
You will most likely be able to get off prednisone, though it takes awhile. Going to an endocrinologist is a good move. My husband was on prednisone non-stop for about 3 years. When he finally...
Hello All. I checked the symptoms diary we kept until everything was back to normal. Early March 2016 -- started with 20 mg/day Symptoms (multiple bathroom visits, urgency and blood) were up and down...
I would not take Fosamax based on GI recommendation — I think that’s old school at this point. If you can, you should consult with an endocrinologist who specializes in osteoporosis. Depending on...
Sara — I don’t know about the jaw tightness, but feeling out of sorts and lightheadedness could be related to prednisone taper. My husband was on prednisone for a long time and had lots of issues...
What’s the purpose of the colonoscopy right now? If you’re not having symptoms, then the inflammation is improved. And if you are having symptoms, then the inflammation is still there. One thing I...
So sorry to hear about the tinnitus. My husband had tinnitus prior to starting Xeljanz. There is a school of "treatment" focused on cognitive behavior therapy -- but I don't know how successful it...
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...
For what it’s worth, My husband started with Remicade and it worked, but never got full remission. He developed antibodies to it fairly early on. Then tried Humira which did nothing. Same with...
Best of luck to you Hugo. I hope you get some quick and long lasting relief. Keeping UC under control with meds feels like being on borrowed time. There are a lot more drugs available then when my...
Husband is now on Xeljanz 5 years. Still in full remission. It was a game changer. He could tell it was working in 2 weeks. Takes 20 mg a day. Tried to taper down when the news came out about...
My husband has been on Xeljanz almost 5 years. It was the game changer. The nice thing was that within two weeks he could tell that it was working. He has been in full remission since Oct 2016. We...
If it is indeed a flare, then you may be able to get it under control by increasing your dosage. My husband has been at 20 mg/day for 4 years with no issues. He started to get symptoms when he’d...
Are you able to see an endocrinologist to help you with the taper? They have a different perspective than GI or GP. It may take a long time to taper but you will be able to do so. My husband was in...
My husband was on prednisone for several years and when he finally tapered off, he was pretty sick because his adrenal gland wasn't working well. He saw an endocrinologist who put him on...
My husband was very ill and within days of starting Xeljanz he started to feel better, and symptoms really improved dramatically over two weeks. He is now 4 years in remission. It sounds like you are...
I hope Stelara does the trick for you. My husband tried Remicade, Humira, Entyvio and none of them worked. Stelara was still in clinical trials and he didn't want to take chance of being on placebo,...
My husband has been on Xeljanz almot 3-1/2 years -- full remission. 20 mg / day. This year his doctor told him he should try to taper down to 10 mg due to the reports about thrombosis side effects....
If you are lucky, the Xeljanz really can kick in pretty quickly, although it may take a few months for all symptoms to go (assuming it works for you). My husband says he knew within days of starting...
While my husband started to feel better within a week, Xeljanz took a few months to completely kick in, and he delayed tapering off prednisone for awhile. And then it was an extremely slow taper....
My husband has been on it three years and hasn't noticed anything one way or the other....
Husband has been on Xeljanz now for three years -- complete remission and no apparent side effects so far. We just had the yearly checkup with GI at Johns Hopkins. Sounds like they still don't have...
I am so glad to hear you are doing better. Husband has been on Xeljanz three years now -- 10 mg in the morning and 10 mg in the afternoon. Still in total remission and no apparent side effects. I...
My husband was off of Entyvio for 6 months before he started Xeljanz, but I think that was just because he gave up on Entyvio, was exploring other options, and it took awhile to get approved for...
You can find some of my posts elsewhere here. Husband has been on Xeljanz almost three years after remicade, humira, entyvio did nothing and surgery was the only other option. His UC was pretty...
My husband has been on Xeljanz for over 2-1/2 years now. Still in complete remission and no side effects....
Give it more time and don't freak out in the meantime. My husband felt "better" very quickly, but had a few setbacks along the way. By 6-8 weeks in you will know for sure....
Are you on prednisone? The symptoms might be pred-related. My husband developed mild tingling/numbness in foot / leg while on prednisone and various other biologics. Ultimately ended up seeing...
My husband ended up going to an endocrinologist to help finally get off steroids. It look a very very long time. First, he went back to the dosage of prednisone where the withdrawal symptoms weren't...
It is 10 mg, twice a day, so total of 20. Your doctor may be confused. There are some publications that describe the dosing information in a confusing way, and the GI corrected me. Also, the pharmacy...
To answer your question re prednisone withdrawal, the symptoms are sort of the same as when you are on prednisone. You feel like crap. Your adrenal glands may have gotten lazy with the prednisone, so...
Nealzy -- There are 1 mg prednisone tablets if you end up needing to slowly taper....
I'm really glad to hear the Xeljanz may be working for you. He was on steroids almost constantly from the time diagnosed in 2013 until 2017 (even though in full remission by October 2016 on Xeljanz)....
Blue Cross / Blue Shield in Maryland, and then in Massachusetts approved Xeljanz for us. We only had to appeal once. The whole process was very fast (less than two weeks, I believe) primarily because...
We had BC/BS in Maryland and then also Massachusetts and they approved the Xeljanz. The appeal was handled quickly, although once the approval was for one pill a day instead of four. Our doctor's...
A 2-month supply as a sample. That is awesome! You could buy a new car with that. I guess Pfizer is doing the hard sell. Good luck with the Xeljanz. You will probably have a pretty good idea whether...