talliecat - one thing I came to realize despite wanting to get off of Pred so quickly was just how long it's taken the colon to heal. Until it heals, I experienced some set backs. Only tried a salad...
Hi everyone... wanted to give an update to give hope. Severe Pancolitis patient... Mid October 2018 after 4-5 months on 30-40mg of Prednisone aka the devil's tic-tacs... I started on 10 mg Xeljanz...
noodlesnoodles I'm in Texas. The point isn't more clinical data IMHO. GI had samples, I tried it and noticed improvement after 3 days. Now 5 weeks into it, I'm nearing remission, so... why do I need...
Yup. BCBS, Denied once - had to have a doctor's appointment... Doc wrote a "he's doing great on Xeljanz samples" progress report and sent those notes and we've now been waiting on the appeal. Doc...
Ok - I just received the doctor's progress notes. Regarding the SED rate and ABS Monocytes... his notes "Elevated SED rate secondary to ulcerative colitis. Elevated SED rate from colonic inflammation...
Hi all... I know I'll hear from the doctor how to interpret these results, but I also know there is *years* of UC experience here on the forum... DX severe pancolitis ~Dec 2017. In a flare from April...
Pride went out the door eons ago; so I will run with depends on - and keep the runs short - 2 mi max. Also resort to a protein shake an hour before - almost acts as Suprep bowel prep before a...
Dosing is 10mg twice per day. I've seen immediate results, then a transition to very slow continued improvement - now in week 5 (and approaching 1 week without Prednisone for the 1st time since...
I've had no issues with sleep/insomnia and Xeljanz... I am finding fatigue throughout the day that I'd attribute to coming off of Pred from 20mg to zippo in ~4-6 weeks... I will say that day 4 off of...
I thought one man's experience with this newly FDA approved drug might be of benefit to others: Tomorrow I will be 4 weeks into taking Xeljanz in an attempt to taper off of Prednisone for a flare...
So Pfizer, with your doctor's request, will send you a free 1 month supply of Xeljanz while everyone jumps through the insurance hoops... I also started to 'panic' as when I dropped down to 10mg...
I'm on day 14 of the same - 2 free bottles for 2 month supply 10mg TWICE a day. Xeljanz... not Xeljanz XR... and with severe pancolitis, I've been able to taper from 40mg prednisone to 10mg......
I had 2 bouts of C-Diff before being diagnosed with UC. Vanco knocked it out for good, but I also was using Probiotics that included the aforementioned Saccharomyces Boulardii. It took the full 2...
great insight... so it does appear with respect to Xeljanz that it takes time + the time needed for the colon to heal. I'll keep updating as the Xeljanz folks are few at this point, so happy to be...
so... now on day 2 of 10 mg Pred, I did have a nice headache this morning and a bit of a sluggish afternoon, but more concerning is that the solid poop I've had has gone back to liquid with a bit...
I started Xeljanz on 10/12/18, but still tapering down on Pred - currently at 10mg Pred, but yes, I've noticed this mildly... however, since I'm tapering, I'm also dealing with the major crash of...
I started Xeljanz 12 days ago after Remicade was ineffective. We stopped Remicade and I started Xeljanz, all while on 40 mg of Pred. Now tapering.... at 10 mg Pred and we've stopped being solid with...
FeelingLessCrappy - that's good to know. I'm dropping from 20mg to 10 starting tomorrow - on a path for a 1 month - 40 days (roughly) taper from 40mg to completely off if the Xeljanz holds... and...
great advice as one can only cut a 10 mg Pred pill so many ways before it's just a dot of powder :) Thanks - I have felt shortness of breath, occasional heart palpitations - like one or 2 a week, and...
suzy-q, how long was your spouse on Prednisone? I see how long it took to get off of it and wondering... I've been on 40mg since April and at GI's direction been dropping every 7 days. So far so...
Very helpful responses... Thank you! I'll let you know if the BCBS approval process is different now that we are on the other side of the FDA approval... I'm 1 week into the pre-authorization...
So for my 8 week dosages of Remicade the cost before insurance was $11,226.00 for 5/ml (I hadn't yet gotten approved to double that dose and move to 6 weeks when the GI and I decided to switch to...
If I may ask, for those of you that got approval for Xeljanz (I assume you are US based and are talking about approved via insurance), were any of you with Blue Cross/Blue Shield insurance? I'm...
I've noticed significant improvement within *days* on Xeljanz. Remicade did nothing for me and my GI said let's skip the Entyvio and go straight to this. I've been on 40 mg Pred for months, and...
Yeah, #1 irritant on my list of UC problematic foods is soda pop... My go to had been Diet Coke; once stopped, the pain / hell stopped. This was with or without the UC meds. I've replaced it with the...
I think it helps to a degree. I use 750ml Hempworx 20 drops at night before bed only and it seems to help me lower the number of times I'm up throughout the night. By no means will it be the single...
It does. Quick update: I on Day 3 of Xeljanz and have seen an improvement over where I was with my 30 mg of Pred (while also staying on 30 mg Pred). Tuesday I'll start to taper. The biggest thing I...
Andrina - just after 1 year of this disease, I can so see where you are. Frustrating science doesn't know more as to why our immune systems suddenly turn on that area of our body......
Yes, understood. I think my question was assuming they were point, has the approval process improved for anyone since this Spring? I'm trying to get a feel for if it will take long than the 2 month...
All encouraging stories... I'm starting day 2 of the drug with severe pancolitis... 30mg Pred to get me to 12 BM a day with blood in the morning at 40mg, no blood, but same frequency and Remicade...
Howdy y'all. After BCBS dragging its feet for 7 weeks on approving the doubling my Remicade dose, my GI and I decided to punt on Remicade and switch to Xeljanz given that I am now 8 months on 30mg to...
Glad I asked! I knew Pred sucked. I can also now see why some folks say the heck with it and remove their colon finally fed up with all the chemical experimentation... Thanks, iPoop...
Thanks for helping me understand. I was headed down the path (if Remicade works) to 40 the 30 for 5 days, then 20... but the initial prescip I had in April was 7 days 40, 7-30, 7-20, 7-10, 7-5 which...
iPoop, yes - I've been on Pred since April 2018, so many months. Withdrawal symptoms? I actually had no idea... more than just fatigue? I'll have to look this up...
PoopinJacek - thank you; this is encouraging as I just got a call from my doc re: my Pred prescript refill to "please only use as much as you need" <-- this is a challenge for this week ahead of the...
beave - ah makes total sense now. I have an appt with the GI doc 2 days after the new infusion regimen... I'll ask. Thank you!...
great feedback - thanks, all. beave - the blood tests I have have shown the "SED Rate and CRP Inflammatory markers are ok" <-- not sure what this means and, then the specific test for antibodies and...
So I've been on Remicade for several months (solidly in that every 8 weeks window now), but it's not doing much as I go between 30 and 40mg of Prednisone to give some semblance of normalcy (10 times...
This article for me at least warrants an experiment. Cease probiotics for a month or so; all other UC meds stay the same (at least until my next Remicade infusion where we're increasing the dose),...
I've been through 4 Remicade treatments (5mg/kg) and never been able to go lower than 20 mg of Pred. I'm currently at 30 mg of Pred and bleed slightly in the morning, have 10-12 BM a day, pseudo...
This is has been my exact situation. I've had to go back up to 30mg Pred to remove symptoms and there I remain waiting for my 4th Remicade treatment. GI will take blood ahead of the infusion and test...
Great post... good question. I'm 3 Remicades in, but still on 30 mg Pred along with Mesalamine and I have solid-ish (like soft-serve ice cream? TMI, I know) but with bright red blood at times with...
yeah, my goal is to try Isatis Cooling and CBD Oil as a means to get off of Prednisone and just keep on with the Remicade - not even sure if/what that is doing. I just took my 1st 3 pill dose of...
tiredofallthispoop - I bought some isatis cooling. so 90 pills and they say the dosage is 3 pills between every meal - does that sound right? I mean the bottle will last 10 days if that is the...
So I have severe Pancolitis that is only moderately in control at this point, so the aforementioned "butt bombs" are a reality as are an occasional full uncontrollable blow out. In all cases, Depends...
Ok - good point. The blood tests I now receive are with every other Remicade treatment, so as the IV goes in for the Remicade treatment, grab 2 vials and watch nealzy pass out... then start the...
Great info. So blood tests show no Remicade antibodies after 3 infusions. Comments on the enemas make total sense. My CBD arrives this week, so I'll let you know; my hope is that it helps me *lower*...
So I'd have to check with BCBS of Texas on xeljanz... honestly first time I've heard of it... life can be pretty ok if I'm ~30mg pred with Mesalamine with the Remicade, but wow what a cocktail of...
Yeah, I've heard that... and is there some gap period one must go through to have the Remicade process out of your system first? so like 2 months no infusions, then start Entyvio, and see potential...
iPoop - I'm also on Mesalamine 1.2G - 4 pills a day; I do 2 in the morning with 10mg pred and 2 in the evening with 10mg of pred and keeping a journal of foods that clearly make things worse... this...