Oh absolutely! I’m way tired of moving day to day to just get by. Only thinking where’s the bathroom, how fast can I get to where I need to be so I have a bathroom, what’s my back up if I don’t make...
Moderate to sever left sided UC Going to push it a few months. See if I can get off prednisone or at least lower. Take care of some other family things as well. Shooting for June now. I figured why...
Oh I’ve defin gotten other opinions. I’ve seen 3 local doctors and then 2 at Mayo. None of them have disagree with any of my treatment. I just fail to fully respond to anything. I’ve had mild...
I appreciate it and hope you the best as well! I literally spend hours everyday trying to talk to people and do research. Last night I was up until about 5am just reading forums and looking into...
Oh jeez I’m sorry to hear that!!!! Yeah I think ultimately surgery will be the answer. How ever after this weekend I think it needs to wait a few months. My family and I need to get some stuff taken...
I’m assuming given your personal experience, you would 100% recommend doing surgery?...
I think that’s my biggest fear, I wait to long and the medication effects are worse than the UC....
Sounds like mayo only really does 3 steps due to better success? and also my prednisone levels prevent from less steps as well...
Oh yeah ive talked to people who've had it done as much as I can. Im on entyvio. thought about zeljanz, but my doctor read the studies and say it has a very low rate especially compared to placebo...
So I am scheduled for surgery at the Mayo Clinic next week. I am struggling to make peace with it as there are so many factors and right now my symptoms are minimal. I'll provide a little back story...
How much prednisone were you on? How long? How much at surgery?...
Where are you surgeries being done?...
I would hope there is one here locally. Just haven't found one with a good set of reviews. Maybe my doctor will be right and I won't need it. He seems confident with my age and overall health he can...
Okay that makes sense. Well went to the GI today and he stated me on azathioprine. He said he doesn't believe I'm ready for surgery and thinks this will work. He said he expects by summer time he...
Yeah I'm coming up on 11 months of entyvio. nothing drastic since about July ish. So the typical UC symptoms weren't the issue during the taper? my concern has always been that I will achieve...
When he started Xeljanz how long did it take to work? How often does he take it? Is it an IV or shot? What happens when he's in remission if his taper is too fast?...
I also wonder if I taper too fast. I was doing 5mg a week and then down to 2.5 a week and when I did the best I was doing 2.5 every two weeks. I just start feeling better and want off it so bad I...
thats interesting. what other biologics had he tried?...
The prednisone is honestly my biggest factor in considering surgery. I can get by day to day and life isn't good but could be worse. the issues being is I have to be on a high dose of prednisone and...
Did the high dose cause you to have to do 3 steps? How hard was it to taper after surgery?...
I am constantly tapering but I usually only make it to 25ish before issues begin to occur. This last summer after starting entyvio I was able to get down to 12.5mg before something happened and I had...
Im concerned about how prednisone is going to effect the surgery and recovery. And what it will do as far as # of steps required. Ive been on 30-40mg for the last 2.5 years...
Were you on any prednisone going into the surgery?...
stapled.[/quote] Have you had any issues?...
ByeByeUC - was the final portion of your pouch (attachment to rectum) hand sewn or stapled? Ive seen a large debate over this....
ks1905 - I have seen that group of doctors and am very curious as it looks like a good group of doctors at SurgOne, just struggling to find actual reviews. I will see if I can dig up more Thank You!...
Looks like I may be looking at surgery in the near future as no medication has put me in remission in 4 years. Trying to do my research for a good surgeon to perform a colectomy but not seeing...
Yeah I was expecting that soon, especially since the symptoms were clear for the most part until now. I haven't brought it up for several reasons. Don't want it haha, my insurance does't cover the...
Okay I'll have to see if I can find some around here. Have you ever tried the bottled concentrates?...
So you just soak them in water overnight?...
Where do you purchase it to make it your self? The bottled stuff I was buying was pretty expensive....
I know Humira has made the biggest difference for me. I'm hoping the extra dose will do it. Especially because it's super easy and quick to take, and it cost me next to nothing with the Humira...
I was actually drinking a prickly pear cactus drink for a while during my last big flare on xmas eve. Didn't understand that it was actually good for symptoms just bought it cause I drank a ton of...
Yeah I asked the nurse about Imuran or 6mp and she said no that Humira should allow me to come off the steroid? Im not sure how this is accurate if I'm not producing the corticosteriod how I'll...
I'm in law enforcement. So I can get to one, but it could be a while depending on where I'm at or if I'm on a call. Yeah I've used Imodium. It somewhat helps but only a few hours and if I take more...
About 6 months. It's improved my symptoms and I felt almost normal. But I've never been off prednisone since I started it. Up until last week I was only going once a day, no blood, and semi formed...
Yeah talked to my dr's nurse just a bit ago and they want me to try the weekly injections and taper again without any other meds. Said humira weekly injections should work if the medication is...
Yeah I'm currently using rowasa at night. It's always helped in the past. Sometime I've been able to use it instead of prednisone, unfortunately with my current career I cant chance it or take the...
I've been on prednisone going up and down dosage since November. Highest at 40 lowest around 10. I can't stand the stuff especially side effects. It's madey night vision bad so o now have to wear...
I left a message for the Dr and he called and left a message yesterday while I was at work and mentioned possibly going to weekly injections with the humira. Do you think id still need the other meds...
No only the prescriptions in my signature....
I have not. My Dr is hesitant to prescribe anything else at the moment. But I'm tired of prednisone even though this last taper at 20 mg is the best I've felt since being diagnosed....
So you were able to use that until you were off the prednisone and then stopped taking that as well?...
I just went to 40mg a few days ago as I started flying during my taper at 17.5. Yeah 6 per day. I only use the rowasa nightly when I flare. So right I am taking it....
Asacol and Prednisone right now. Sorry idk why my signature won't show up....
I was wondering how many people out there take Humira injections more than weekly! I've seen people talk about it but wasn't aware this was really an option? I feel like my body metabolizes really...
Has anyone had any luck with any natural supplements assisting them with coming off prednisone? I've seen licorice? I have tried 3 times and every time I flare again. My Dr is hesitant to put me on...