Do you have a HR Dept? I’m seriously annoyed that security check staff should be allowed to be “jerks” and ridicule people for what’s in their bag. Another option would be to draw them aside and tell...
I’m another one that gets sickly with preps (although I do get well cleaned out). My go to drinks now include coconut water. It doesn’t taste that good although there is a pineapple flavored one...
Lila, just an FYI — I am also on Medicare and get entyvio infusions every 8 weeks. For expensive drug and injectables while on Medicare with a part D plan, I’ve learned there are some other options....
You know I had issues with post nasal drip too. It’s disappeared the last few years. I always wondered if it was related somehow to UC as UC is inflammation of the mucosal lining of the gut and I’m...
Are you saying you’re tapering 5 mg of pred per day? Usually it’s 5mg per week....
Are you talking about eosinophils? My last test at quest measured for absolute eosinophils. Mine were a little high. Reference range was 15-500 and mine were 518. I saw my dr after and he didn’t...
I was hoping things went well today! Sending you positive thoughts! I’d be worried too but I bet you’ll be fine!...
I think the liquid is more effective. The pills are very chalky and you have to chew them (or they used to be anyway — maybe they have liquid capsules now?). I was given milk of magnesia a lot as a...
I would too. I think our system is fixable — I hope. I know the British health-type of system has its own set of problems so I’m not convinced that’s the way to go. IMO it’s the insurance companies...
Metamucil or psylliums seed/fiber can be helpful for constipation. Or you can try miralax. Turmeric supplements are said to be helpful....
It totally doesn’t make sense to me that the infusion center has to try to schedule patients with medication being controlled by a 3rd party. I bet the nurses at the infusion center hate it. I can...
Had my appendix removed about 1986. Very sudden attack. Don’t remember if anything led to it. I was young and healthy then. Didn’t get UC until 2015....
Gotcha! Just further fyi- Medicare doesn’t have any so-called “step” therapy requirements. Medicare itself is no hassle no worry. Infusions and their medications are covered under medical, not...
IMO if you see positive improvements early on it’s a VERY good sign of what’s to come! 🤞...
I can’t even ….! Cc the only thing I can tell you is that Medicare, in your case, will be so much easier. Aren’t you eligible soon? I am never hassled about my infusions. Be sure you have a...
Ok moving furniture and a chicken coop so you have to drag it back is more than mischievous IMO. It’s annoying and frustrating. And more work than you need. I love Andy Griffith too!...
Yah I wouldn’t say that a Twinkie or hair spray would be my go-to- weapon of choice. But whatever’s handy right? LOL...
OMG clo! Thank you for brightening my slow morning wake-up! Love that you were dialing 911 on you tv remote! That was the part that got me grinning. So whoever said country life was lazy and slow?...
Hah! Good one Serenity! I have no advice as I have no problems with cleaning out as the preps work way too well on me. But brutal as hell. Good luck! Let us know how it goes....
Arrrrgh! So sorry you have to deal with this stress and worry! I wish there was some way to bring humane compassion and common sense to insurance companies but I know it’s simply not possible. At...
Yay! Glad you stayed on it and got in on time! I had to delay my entyvio infusion by 10 days while I was sick and even though I’m in a solid remission for 5 years, I’ve noticed a difference. Nothing...
I would call and ask them to send a copy of your biopsy by email or mail or for you to pick up if it’s not inconvenient. It’s important to have in your hands for later use (maybe you change drs or...
Clo Maybe your friend would order the cranberry for you from Costco.com? 2 day delivery for $22. I checked and Amazon has them also — for $50 but it looks like you get 2 bottles for that price....
Clo do check out Costco for the cranberry. It’s TruNature brand and less than $30 for 180 capsules. Might have a coupon this month through the 22nd. Ingredients: cranberry proprietary blend 650 mg...
Been on entyvio almost 6 years. Unfortunately I’m the wrong person to ask about headaches as I’m a migraine sufferer and I had them before I started entyvio. They did get much worse and more frequent...
I’d worry more about the approval until July. Do they mean you can start it anytime before July? Or do they mean theyll pay for infusions up to July and then may not pay for anymore after July hits?...
Oh CC that sucks so bad!!! I want to cry with you! Crossing my fingers that it’s somewhat quickly resolved. When is your next infusion?...
I had the new bivalent omicron booster in October. Got covid at Christmas. Wasn’t very sick which was a good thing. They say this new variant is extremely contagious and has evolved to bypass the...
I just saw the first commercial on tv — that I remember seeing, maybe I just never noticed before — for Skyrizi for Chrohns. Did it just get approved for chrohns or is that old news?...
Big hugs to you Clo! Wish I could make it better for you!...
Just wanted to say thank you to you all! Since this is such a new med, posting your experiences here is invaluable to all of us UCers—no matter which drug we’re currently on—and especially those new...
I’ll just pop in to add that those of us on biological really understand the angst that comes from looking at making the decision. I remember thinking the same thing about it seeming like such a big...
Clo — re estrogen and osteoporosis. I’ve a friend who has osteoporosis and has been on just about every med for it there is. She last had an injection (yearly or biannually?) but stopped those when...
Lka I have Medicare. Infusions are covered under the medical side since they are doctor/hospital settings so the medication does not go towards the prescription side. Medicare pays 80%. You will need...
I understand the fear over escalating drugs. Been there. Didn’t wanna do it. SO glad I did. Remission is great! As far as entyvio — almost 6 years on it for me. No side effects. Not sicker than usual...
Happy New Year! May 2023 be filled with all the good and less of the bad. Especially more peace and less hate! where there is hatred, let me sow love; where there is injury, pardon; where there is...
Seems to mr to be a case of “we’ve tried everything we know to do and don’t know what to do for you so you must be good!” Or something like. But I get how upsetting that can be when you feel like...
Have you ever given dicyclomine (bentyl) a try? It can help with tenesmus — which I’m assuming you mean by straining? To me it feels like a muscle spasm in my sphincter/rectum. Very uncomfortable!...
I’ve been in remission a while now but the fear of a flare never really goes away, it just fades into the background where I don’t notice it so much. So even though I don’t need advice much and don’t...
Thanks for the updates! Song so sorry for your “chronic cancer”. Hope the new regimen is easier on you — and effective. 3TC — damn the fun never stops! You both are inspirations for your positive...
I have been taking Aimovig injection monthly for at least 3 years and have never had any issues. It actually has more of a tendency to cause constipation rather than diarrhea. Of course I was already...
I would give entyvio 5 doses before writing it off. It was 5+ years ago now for me so the timeline is a little fuzzy. I must have been showing some improvements after the loading doses because I do...
Also CC — just an FYI. As of this time Medicare covers infusions under their medical side so infusions are covered at 80%. My supplement (plan F) covers the remaining 20% so I don’t need copay...
You’ve been on entyvio for 90 days? So how many infusions have you had? It took me 4 months to get to symptomatic remission, although a colonoscopy at 6 months still showed inflammation at the...
I have to say Medicare is sooooo much better for me than private insurance was. The prescription plans are way confusing — they are the big drawback. There are new rules going into effect so hoping...
I’m so sorry! Being in the hospital sucks at any time but especially during holiday season. Hoping you feel better soon!...
It also may be the that it’s taking a while for the inflectra to build up in your system. You may be like CC in that it works for you, but only at a higher dosage/frequency than is the norm. Since...
Yes … there’s supposed to be a yearly cap on out of pocket expenses (I heard $2k which will help tremendously! Also I heard they will allow Medicare to negotiate prices, which I am assuming (and...
Whine away! We’ve all been there and understand. And that’s what this place is for anyway! 😀 Please let us know when you get your med and your progress. We’re always interested to hear progress...
I wish to heck insurance wouldn’t drag their feet so long that we end up even sicker than we were when we started. It’s so frustrating! I hope you get your med soon and you get out of that flare too!...