It’s ok to take long term but your body will become tolerant and you’ll need more of it to have the same effect. I took every day for many years in the morning like vitamins. Eventually it stopped...
Go very very slowly, like reduce just 1mg a month. If symptoms flare go back to the last dose and stay there until stable before reducing again. Try alternating days. Reduced dose 5mg one day, then...
I’ve been taking Xeljanz off label for several years. Approved for arthritis in trials for CD and UC...
Yes I stopped drinking OJ because it seemed to upset my CD. Assumed it was the acid and or sugar. I mainly stick to just water and tea now. I’d love to go back to OJ in the mornings but I’m afraid to...
Entyvio could be another non anti-TNF option...
I was in the Prochymal trial for Crohn's. Not sure it did much to help me....
You should give the Xeljanz more time to see if it’s working. I also failed many drugs - remicade, humira, entyvio, pred, 6-mp, pentasa, you name it. I’ve now been on Xeljanz for 3 years and am in...
Definitely check medications. Some can pose risks or reduce fertility. Being aware of increased stress from both trying and having a family can be trigger. It shouldn’t stop your plans but he should...
I thought this was funny. Easily could have been me on many occasions, although I wouldn't go back to the same spot....
My "normal" is also 3-5, mostly in the morning, while I'm in remission (for the most part). Some days can be more depending on what I eat, but the main difference when I'm flaring besides double...
Long time Crohns sufferer. I do not have Celiac but was looking for diet alternatives and eliminated gluten 7 years ago. I don't know if it helped but kept with it as my Crohns was somewhat...
There is Remicade induced psoriasis which affects some people. I developed it and it went away after stopping remicade, which wasn't doing much for my Crohns anyway so it was an easy choice to stop....
Yes I also developed psoriasis from Remicade. I had only taken a few infusions, and it wasn't really helping my Crohns, so we decided to stop Remicade. Psoriasis cleared up eventually after stopping....
I took Lomotil for several years. I would usually take 1-2 a day, often more if I had a busy day away from bathrooms. Pretty sure I built up a tolerance so I tried not to take so much except when I...
I thought I'd give an update on Xeljanz which I've been taking now for over 2 years. Just had first colonoscopy since that time and results were "basically normal"! No signs of Crohns except at the...
I did the same for my last prep even though they prescribed something else. Miralax and Gatorade was by far the easiest prep I have done. I usually get very nauseous and have trouble keeping it down....
Not migraines but I did have persistent headaches when I was taking Entyvio, especially for a few days after infusions. Entyvio didn't work for me and I stopped taking it after 6 months...
Yes I'm still taking Xeljanz and doing well. I think I noticed it started working within the first month for me, with continued gradual improvement over the next few months. I would probably give it...
I'm still doing well on Xeljanz. No side effects that I'm aware of. My disease was very active before I started taking Xeljanz. Not the worst it's ever been, but very active. On a scale 1-10, 1 being...
Here is the link to the anti-MAP clinical trial https://clinicaltrials.gov/ct2/show/study/NCT01951326 There are 94 locations listed that are recruiting for the trial, one is in Kansas. Not sure how...
I have been taking Xeljanz off label for the last year for CD. The dosage is triple the approved dosage for RA. It took some doing but my insurance covers it. The doctor had to submit a justification...
It is only approved for RA in the US. But as long as it's approved for something, your doctor can write a prescription. It's considered "off label". Once you have a prescription the pharmacy will...
Insurance may be an issue. I was lucky mine covered it and I'm just making a small co-payment each month. In the beginning there wasn't even a copay because the drug company was covering it trying to...
To get Xeljanz all you need is a normal prescription....
Yes I think it was probably easier with my doctor to ok off label because I had taken it before. But it's up your doctor so can't hurt t ask. I've also tried just about every other treatment and many...
There was a Crohn's trial for this drug maybe 5 years ago that I did. It was only a 4 week trial but I had some improvement during that time. It was a blind study so we didn't know if I was getting...
I'm halfway through with the Miralax and have to say it's the most tolerable prep I've ever done. Usually I have a hard time getting and keeping it down because the salty taste is so bad. I drank...
Not my first scope (25 yrs with CD), but never had the miralax prep. I'm gagging right now just thinking of the salty preps so miralax sounds appealing. Maybe I'll just drink lots of water in the...
I'm also deciding which prep to use. The doctor's office sent an instruction sheet with 3 choices: moviprep (no thanks), suprep, and miralax. I've never done a miralax prep before, and it looks much...
I generally go to the bathroom within 30-60 minutes of eating. The more I eat, the quicker and more urgent I'll need to go. I'm sure it's not the same food I just ate, but something about a full...
I think the drug companies just target diseases with the most people, so they can make more money. Xeljanz was tested for crohns, I was in the trial, but I don't think the results were conclusive or...
Update: I was able to get approved and started on Xeljanz yesterday. The drug company is covering up to $40 of the copay, I guess because it's new, so it cost me nothing! Now if only it works for me....
im not going to stop eating, just venting. I started Entyvio 4 months ago but not helping yet. I did take a stool culture a few months ago to check for infections....
16 weeks still no changes for me :-(...
I've been in a flare the last few months. Can't go more than a couple hours without a trip to the bathroom. Sometimes 3 times in a single hour. I've lost 15 pounds and I don't have that much weight...
There are a bunch here taking Entyvio, including myself. General consensus seems to be that it takes a while to start working. The jury is still out for me, I've been on it for 16 weeks and nothing...
I was in a Xeljanz trial a few years ago and it had a good effect for me. It was approved for Rheumatoid Arthritis but it's still in testing for Crohn's. My doctor said he will prescribe it off...
I'm at 12 weeks and still no improvement. In fact, last few weeks have taken a turn for the worse. I am in the failed all anti-TNF treatments category so maybe it will eventually kick in. Doctor said...
Usually in and out of the doctor's office in about an hour. I go right back to work and don't feel any different....
I started Entyvio July 8. I've had 3 infusions so far. There have been a few good days but otherwise not much better. My doctor said we should give it 6 months to start working. It's been almost 2...
I just had my 3rd infusion yesterday. I thought maybe there was some positive signs a couple of weeks after the 2nd one but it didn't last long enough to declare it's working. Hopefully it starts to...
Just had my first infusion today. Fingers crossed.......
My insurance is Cigna. I think it has more to do with the doctor pushing. Luckily mine handled all the details with insurance. There is a physicians assistant who does all that at the office. I'm...
I received approval last week from my insurance company but still waiting for a the pharmacy to receive it. Apparently it's in limited supply....
I called Takeda. They said it will be available for distribution at select pharmacies, physicians offices/infusion centers by June 2. Now I just need to find out if my insurance will cover :-(...
Anybody know about how long it takes now until it's available?...
Me, too. May 20 is the date for UC. The date for CD is June 18. I'm planning to take it for CD as soon as it's available. I was excluded from the study because I had taken Tysabri years before,...
I started taking it about 6 weeks ago. Haven't noticed too much side effects, nothing like prednisone effects, and I think it could be doing my CD some good. I noticed some mood swings the first few...
I just got a Rx for amoxicillin for sinusitis. Is it ok to take with CD or will it cause a flare? I really need some relief from this sinus pain. My GI office is closed for New Years, wondering of I...
I have been watching this drug for a while. I took Tysabri in it's trial stage and wasn't allowed into this vedolizumab trial because it was an exclusion criteria. Tysabri worked well for me and this...