I think it took me about 4 months to have complete symptom relief although a colonoscopy at that time showed microscopic inflammation. A later colonoscopy showed complete remission....
Been on entyvio for 4 years next month. In remission!...
I’ve been in remission on entyvio for 3 years next month. Or is it 4? I think it says in my signature....
Had my 2nd shot of moderna Friday at 11 am. Woke up at 3 am with severe chills. I won’t lie —yesterday was really rough. Tylenol would take down the fever but once it wore off it would come back....
As far as entyvio and remission — I eat anything I want. I do note that sometimes too much sugar will affect me but it’s not every time. I haven’t eaten beans for years because of diverticulitis—...
Also consider you’re early on with your infusions after only 3. With entyvio I struggled a bit in the 8 week timeline between the loading doses and the first 8 week interval. Rectals during those...
Been on entyvio 4 years next month. No side effects. No symptoms. Yes I was very VERY hesitant to go on it. Worried and depressed. Put it off as long as I could. After I got to remission I wondered...
Not on humira but entyvio. Had moderna 1st shot and 24 hrs later ran a mild fever (less that 101) and chills. Took two tylenol and that knocked it out. Getting shot #2 on Friday....
My opinion is you should definitely look for another GI. I don’t understand why your current one would be happy with the effect your mild flare is having. Sounds like it is interfering with your...
IMO the goal is no inflammation via a colonoscopy. You can have an absence of symptoms and yet still have inflammation. And inflammation long term can lead to cancer sooner than drugs. (Again my...
I know steroids long term effects are scary but so is an uncontrolled flare. And the short term effects can be pretty substantial. Definitely a double edged sword tho. I was one of those who mostly...
I got the moderna because that’s what was available. I had a very sore arm and then 24 hrs after the shot got chills and slight fever that Tylenol took care of. Going for #2 moderna on Friday. I read...
I never went on aza so I can’t compare but from what I’ve read seems like it can be worse on your system than some biologics. I understand your fear — I was depressed and upset when I went on entyvio...
I’ve had one and it’s not bad at all. Although it was many years ago and I don’t recall if they used anything or not. Sorry I don’t remember any details! But I’m sure if it was awful I’d have a...
You definitely need to step up your UC meds. You shouldn’t be flaring and in constant pain from UC. Rectal meds work wonders for rectal pain. Also there is a anti spasmodic med that can be used....
Yeah I found my first shot reaction happened 24 hrs after the injection. I am expecting to have your experience with my second in 2 weeks. But it will be worth it in the long run. And they do say...
I understand your feelings Jane. I got very depressed when I was at the point you are in. I finally went on a low dose antidepressant which really helped. There are studies that link depression and...
I understand your frustration! I was in the same boat to an extent thanks to insurance. Most pharmaceutical manufacturers have two programs. One is a copay coupon program where you pay a portion of...
Vaseline here!...
I haven’t done anything. But I haven’t seen my doctor either. I feel fine....
It’s been happening to me too. Both low sodium and chloride. Not dangerously low but it’s been several months now....
So sorry! Active flares are a nightmare and kept me almost housebound. That being said there is hope. Hit your flare as hard as you can. Don’t let fear of medications keep you in a miserable flare...
Been in remission with entyvio for almost 4 years now. There’s a chance of cancer with almost any drug really and who knows what else — the air we breathe or the food we eat. That’s the way I look at...
I went on entyvio a year after diagnosis after mesalamine didn’t put me in remission and only prednisone relieved my symptoms. Took about 4 months to be symptom free which is normal for entyvio but I...
I feel the same as you. I think while flaring that foods can over-irritate an already raw gut and cause an increase in symptoms but the food item does not *cause* the symptoms. When I was flaring I...
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...