Also got moderna last week and on entyvio. I got chills 24 hrs after injection and ran a low grade fever 100.-something but after taking two tylenol that went away and the next day I felt fine. My...
I’ve never actually used the enemas. Uceris foam can be used twice a day. I used it during the day and Canada suppositories at night....
Prednisone? Have you tried the uceris foam? It’s more topical than the pills. I always found it pretty soothing. Otherwise there’s steroi enemas. Have you tried mesalamine suppositories or enemas?...
I ended up running a low grade temp. Started about 24 hrs after my injection. Took two tylenol and that took care of it. Felt fine the next day — maybe a trifle more tired but my arm was much less...
I imagine it’s not the uceris making you worse but your flare escalating but that’s just my personal opinion. I took it for awhile but it didn’t help much and my GI told me there was no need to taper...
Stress was a huge part of my disease. My mothers had severe dementia 4 yrs and her death process was the worst I have ever seen and never want to see it again. The last 2 years of her life I was in...
No experience with COVID myself but just wanted to say my friends 3 yr old granddaughter just had COVID. She ran a high fever and was lethargic and complained of tummy and headaches. I don’t think...
I’m on entyvio rather than remicade but my experience with heading into remission is that progress is slight in the beginning but any improvements no matter how small should be viewed as a positive....
Been in remission for almost 4 years on entyvio. It is slow acting so not unusual to not see a lot of change after only 3 doses. I did see some small changes by then — such as being able to wean off...
Calif just opened up to 65 and older. I got the Moderna vaccine yesterday. My arm is really sore today! Started last night. But my husbands is not. I usually get a slightly sore arm from flu...
I also didn’t have any vaccines prior to starting. They did test for TB beforehand. Entyvio is not weight specific so everyone gets 300 cc/ml/whatever the volume measurement is. I only weighed 100...
Yes that is encouraging! I’ll also add that I haven’t been sicker than normal. I get my yearly flu vaccines and take Airborne whenever I feel a slight sore throat and I don’t think I’ve even had a...
If remicade and humira are the only biologic you’ve tried you’re still not out of options. I’ve been in remission with entyvio for 3 years. It was my first try at a biologic so I got lucky my first...
Entyvio takes awhile. But I’ve been on it for 3 1/2 years and in remission. I Was about in the same condition as you when I started. I was steroid dependent but started a slow taper with my first...
I had the same reaction to stress from my mothers dementia disease and death. 3 weeks after her death I woke up with bloody stools and it rapidly progressed to pancolitis so I well know what long...
I was in much the same boat. I went from 0 symptoms today raging in about 2 weeks and ended up in hospital for 20 days (mainly due to incompetence at 1st hospital so after 9 days I checked myself out...
I used to take Apriso but it wasn’t covered by my insurance so I enrolled in their patient assistance program and got it for free. I’m no longer taking it because entyvio put me in remission....
I’ve been popping up polyps like crazy. A few years ago they found 4 so colonoscopies were repeated every 6 months with a blue dye as one polyp was pre-cancer. Then I had one colonoscopy showed no...
I notice the study says Remicade AND the diet. How do they know most of the effects weren’t mainly due to remicade? (Caveat — I didn’t read the study - maybe it explains?) while I agree in theory and...
Personally I would try a biologic. At least if you did have to resort to surgery you would know you’d given it the good ole college try. I went with entyvio and have been in a lovely remission for...
I take Metamucil powder nightly. I prefer the brand name as it does seem to dissolve better than some of the generics. It is thick and kind of grainy but you get used to it. Drink as soon as you mix...
I answered on the other thread about part d costs. We’ll kind of. I have no experience with humira but you should check with whoever you buy your part d plan from and see if it’s covered. There’s...
You are correct about Medicare part d not allowing any assistance programs. However that is for the lowered cost copays programs. Most of the manufacturers have 2 assistance programs. One is a...
I just had one and had no issues taking macrobid. But then I’ve also taken cipro and levaquin with no issues. I’ve tried everything to avoid utis with no luck. When they hit me it’s with a...
I talked with an acquaintance of my husbands once who has crohns. He is on humira and also on Medicare. He gets it for free from a foundation — I’m assuming that’s thru the humira manufacturer. I...
I’ve been on entyvio for 3 1/2 years and don’t have gout symptoms. I do experience some tenderness in my feet when I first get up but it goes away after I walk a bit. but not sure if that has to do...
Mitz, my condolences in your loss. How wonderful you were able to spend those wonderful days with her while she was able to still participate and interact! Those memories will be a blessing. Having...
I think all 3 of those foods would make your stool dark but not really sure that’s a bad thing? Did you have any other symptoms? Maybe cut back so it’s not every single day but those are all super...
Didn’t have a tonsillectomy while on entyvio but I did have a pretty major wrist surgery to insert a big metal plate to repair a shattered wrist and had no problems. I did have to take antibiotics...
Welcome to our sorry little club! 🥴🤪 If you have c.diff that will definitely make your symptoms worse. Lots of posters here have had to do a second or third round of medication to get rid of it. I...
No other meds. My GI ran a blood test early on that showed I would not respond to the 6mp class of drugs. I think it said I was a non-metabolizer or something like that. I did take methotrexate for...
Do you have any rectal meds you can use? You might wait a day or two and see if it continues and if it does definitely call your dr. If it is a flare it’s best to catch it early....
Entyvio was my game changer. I was diagnosed at older age and spent a year being sick and weak and lost 20 lbs putting me under 100 lbs and mostly on prednisone. My doctor put me on entyvio and now...
I take Xanax at night if I have trouble sleeping and that’s what I used while on Pred. Xanax is not good to take very often but I am careful to not take very much or very often. It’s just enough to...
My doctor chose entyvio for me because it was more gut specific and Medicare Covered it with no issues. I’m so thankful me GI talked me into it because it’s been life changing. It’s as if I don’t...
I have a precancerous polyp a while back and we repeated the colonoscopy in 6 months with a blue dye which helps make polyps more visible. I think I had another one in another 6 months or it could...
Did you look on amazon? There’s no shortage in my area. I agree the genetics aren’t as good. They seem to be either off-tasting or gritty....
Entyvio was the ticket for me. I didn’t want to go on a biologic but it turned out to be the right choice for me. It started working fairly quickly for me although complete symptomatic remission took...
I get my Aimovig for free from the manufacturer. They have applications online. The manufacturer name is Amgen. ((800) 932-3060) They also have a copay assistance program....
I’ve been on antibiotics 3 times this year for bladder infections with E. coli and had no problems after. This last time I went ahead and just took my probiotics at my usual time but I usually only...
I was told no seeds for 3 days before but other than that no diet restrictions. I did split prep. Started at 6 pm night before. My appt the next day was 1 pm so I didn’t start prep until 9 am that...
I just had one two days ago. Same procedures as serenity. They gave me one of their masks to wear which I kept on until I was in procedure room. Then they took it off because I was having an...
Glad to hear you’re finally doing better! You have been through a really tough time!!!...
I was on it in the hospital because of incompetent doctors not knowing what else to do. It really didn’t help all that much. Like you said slowed it down a little but not all that much I don’t know...
Wow! So sorry for all you’re going thru. I didn’t realize it was the hospital that wouldn’t admit her ! Having been thru dementia with my mom I understand how stressful and worrisome it is for you....
Also wouldn’t hurt to try some probiotics if you’re not already....
Also — hospice sounds scary at first but they are really more than end of life care. My mother was on hospice for about 2 years — on and off — with her dementia. They came once a week (maybe twice?)...
I would consider calling an ambulance to take her to the emergency room. From there it’s easier to admit to hospital. Lie if you have to and say she’s having chest pains. They have to take her then....
I'm on Entyvio and have been in remission for 3 years. I've been on antibiotics 3 times this year -- once for diverticulitis and then 2 bladder infections. I've taken levoflaxin, cipro, and...
Just another data point for entyvio — I started it about the same time as you and am also in complete remission. Such a nice feeling! I have a colonoscopy on thurs but expect it to be clear (fingers...