I'm very sorry to hear of your struggle.... If helpful, & perhaps a source of some optimism-here's my update: I've been on Entyvio 2 yrs with no issues. Not doing methotrexate altho i hear it's...
That's great! Wishing you faster-than-anticipated healing and a fresh start with a bright outlook. Congrats!...
Insurance company wants me to do infusions at an outpatient infusion center or at home. Given my highly allergic profile, I wouldn't do it at home, & am searching for infusion center near...
Just seeing your post now, as I've been offline for a while. So sorry to hear of your pains. A small % of us have had this adverse effect on remi, and unfortunately it can take quite a while to...
Gee, I've used them for two decades and never had pain. I just try to relax. I also warm it first before inserting (running bottle under warm water so it's not so cold). Usually is very soothing for...
Hi Roadtrip, Sorry to hear of your pains and thanks for inquiring for updates. Pains do come with UC. My story was different though so please bear with this update. We have learned a lot over the...
Mine started as UP and gradually extended to UC, moving its way upward with leaps from each flare. Cortenemas have helped a lot to calm things initially and even over the past few decades when it was...
For what it's worth, I'm about 10 months on Entyvio. I have had a very bad asthma exacerbation recently and flare ups of GERD (with esophageal erosions) despite ongoing medications for each. I had...
Recently a thread was locked about forum members sharing experiences of our different medications. There were some strong opinions expressed. I want to share what I hope is constructive, to convey...
I've had different tapering approaches depending on length of time at 50 or 40. 5mg decline every 5 days should be ok if symptoms don't return. Key thing i've found helpful is to go very slowly under...
Tried it and it didn't help me. But maybe you'll have success!...
Yes, peripheral neuropathy. But not related to Pred taper. Mine doesn't seem to be associated with either inflammation or anti-inflamm relief from Pred. For what it's worth, I always do super slow...
It may seem weird but plain old Vaseline has been very soothing. I applied it after cleaning with washcloth (gently) and it covered raw skin. Did it a few times a day and at bedtime. I had a lot of...
Ditto. I felt horrible. Fluconazole helped me get rid of it....
Finally gave in and bought different sizes, and I've kept them. Glad I did! Came in handy with weight loss when flaring. Then with weight gain & bloating. A real roller coaster. Needed more closet...
Lifting weights & aerobic workouts etc while flaring always seemed to make my flare symptoms worse. And on Pred the threat of tendon tearing is real, as mentioned above. I've found that my energy...
Glad to hear your happy news! I hope you continue to feel so much better!...
UB, Good move to go to ER and glad you are getting admitted to hospital. Hopefully they'll swiftly diagnose all that's going on and together you can come up with a viable game plan to manage the pain...
I've been following your posts the whole time. I think you can trust yourself about next steps given all you've been through. It's terrible that you've had this ongoing ordeal for so long. I commend...
Bowel rest briefly, then rice & chicken broth when i resumed food. On occasion a little Imodium. One more thing: staying well hydrated is essential....
Hi UB, you've had such a tough time. I'm so sorry. You're in good company here. I can totally relate. I'm going on 20 yrs of having UC. Many long flares (which have worsened over the years) that each...
Looking ahead once you get test results: If they advise you to take iron supplements (enteric coated tablets), you may get bad stomach pain. I had anemia from UC and couldn't tolerate them. Some...
So pancolitis but moderate inflammation- given your preferences it sounds like it'd be reasonable to kick it up a notch to a biologic. Remicade will give you faster results than Entyvio if you...
Miralax can be mixed with various liquids - cold & hot- and it's not a slimy texture. I never gag or vomit as I have done with other preps. Good luck!...
Another factor to consider, if you can afford it, is that I prefer doing infusions at hospital (in the unlikely case that something goes wrong) even if I have to pay a bit more. Insurance varies so...
What a difference a day makes! Glad to hear of the changes. She'll feel so much better healing at home, for sure. Please tell her I send my support as well. And thanks for updating us....
I can empathize. Struggled with sinus infections a lot over the years. Have had nausea and D with doxy. Can't tolerate it. Augmentin reactions led us to conclude I'm allergic to all forms of...
Sounds like the Pred taper was too fast. Based on my personal experience, the advice to increase is reasonable. I know it's disappointing. Whenever I'm on Pred, I'm eager to get off ASAP. It's...
In case it's helpful and to provide some encouragement, when I started remicade I was flaring severely. I saw results very quickly though the loading doses. To decrease my discomfort, I ate very...
Just wondering about OP which was January 2015. If you are still checking in here: How are you doing? Did lupus subside? Taking Entyvio and going ok? I hope so. Wishing you well....
Chiming in to agree - find a GI dr who will give you medication strong enough to manage your symptoms. Including some rectal meds (like hydrocortisone enemas) may give you some immediate relief while...
Wishing you some self-compassion. I've struggled with this since I've been on Pred a lot. No need to be ashamed. UC is an endurance test with different challenges for each of us at different times....
Hi Poppie, I think you said you're headed to hospital Monday. I know it's a big step. Thought I'd send a note so you know you aren't alone. Sending healing thoughts & lots of support....
Me too. I've been very strict. To be honest, I would look at what I used to love and then I began to associate it in my mind with imminent discomfort if not disabling digestive pain. So it was no...
For what it's worth, I'd also lay still and try not to think about it. I was determined that it was all going in and would last all night. I'd read or watch tv to distract myself......
Affirming above replies, it could be EIM of UC, which is very common. It could be symptomatic of other conditions (for example arthritis, lupus). You could see a rheumatologist for a diagnostic work...
I've had it several times. Since I can't take ibuprofen, I've used Tylenol. Also a heating pad. Resting has always helped a lot. I've always been amazed at how painful it is. Hang in there!...
I'm no expert but want to report that I have blood work done right before every infusion - both CBC and metabolic panel. The weird thing is they do the infusion before the lab results come back. But...
Hmm. I trust you know what you're doing with diet. For my body, I couldn't eat most of what's on your list when I was flaring badly. I gave up on nutrition and just went for bland chicken broth,...
Gee, each of our systems is so different in terms of drugs.... I had a very bad experience with 6MP - even at initial low dose. And I'm allergic to all mesalamines (as well as sulfa, penicillin,...
For what it's worth, I was allergic to mesalamine enemas but i did so much better after switching to hydrocortisone enemas (and they helped enormously!)...
Could you try some Miralax to reduce constipation? It has helped my when I've struggled. And I've been really diligent with bland diet. So sorry to hear you're struggling. What's the long term game...
Could be costochondritis, which has happened to me from coughing. If that's what it is, the pain usually subsides gradually and then completely within a couple of weeks....
I've been on these a lot over the years - very soothing without apparent negative side effects. Even though it's a low dose steroid (<8mg absorption per?), I've always tapered and found that process...
Just want to weigh in with support for the good Pred has done for me. Been on several cycles when necessary. Also when I reduce below 10mg, I go very slowly. Especially after long term use, I reduce...
I agree. For what it's worth: Took a while for Entyvio to kick in for me, and I tapered Pred very slowly. I know it's a real endurance test, emotionally too. Sending support your way....
Just finishing Entyvio infusion now. Been on it 8 months. No problems....
For what it's worth, I've had severe extended UC flares (lots of inflammation & bleeding evident in colonoscopies) and yet no elevation of either sed rate or CRP. My docs say that's the case for some...
When I flare, i have to go very bland. Lots of chicken broth, white rice, hot tea, grilled chicken breast, tuna, puffed rice (for something crunchy). Re: liquid, I found Orgain vegan vanilla shake to...
Sounds reasonable to me too. A lot of folks do 6mp w/remicade. Personally my system couldn't tolerate 6mp. No problems with Entyvio though!...