Just turned 70! I have been on entyvio for 4+ years now and happily in remission. I just had my 33rd infusion yesterday. No side effects. Haven’t been sicker more than usual. Had great antibody...
Thankyou. Do you know the name of the test[/quote] Thiopurine Methyltransferase I guess I have a deficiency— following is an explanation from medlineplus: Thiopurine S-methyltransferase (TPMT)...
I agree with the others. It’s more dangerous to have uncontrolled inflammation than to go to more effective drugs, IMO. There are blood tests they can run that will show if you will respond to...
Sorry too! I thought Medicare was only in U.S!...
Just a data point — been on entyvio for 4 years and have actually had fewer respiratory infections than before....
There are a few places, like university of North Carolina, running trials and tests on response to covid vaccines in people with IBD, according to which biologic they’re on, and those on entyvio are...
Nope. Medicare doesn’t have requirements like that nor do they require pre-authorization — which I found really scary as I was scared I’d have the infusion and then they’d decide not to pay for it....
Update: Received my 3rd dose of Moderna (full dose) and was tested for UNC’s trial on 11/15 using the Cov2Quant IgG test. My result = 218 I was tested 3 months after my 2nd dose and the result then...
Seems someone else here just lately posted about having remicade reaction? And they kept on with it but we’re pre-treating with antihistamines? Sorry I just have a vague memory....
Another note: when I first started the foam, someone here advised me to hold the canister (mine was very small and easily fit in my hand) for a few minutes before use to warm it up a little so it...
Foams will come with instructions. Mine had pictures of putting one foot on toilet. You can lie down for a few minutes after but it’s also not necessary. There’s a feeling of fullness at first and...
Remicade has been around longer so has more data on remissions rates and lengths. Quite a few on here have been successfully in remission on remicade for many years. Should entyvio fail for me it...
BTW - years ago I had the beginnings of severe periodontal disease and receding, bleeding gums that I finally put the brakes on just by flossing each night. It seemed a hassle at first but quickly...
Hope you feel better soon clo! And sorry for the losses in your family! My main reaction to 3rd Moderna dose was fever and joint aches. Lasted 2 days. Nothing GI at all....
There are reports of flares after the vaccine. If you do a search for vaccine and flare you can read them. I had moderna vaccine and just had my 3rd dose but did not flare either time. Others here...
Medicare prescription plans are a mess. So hard to understand and the pricing make no sense. IMHO it’s criminal to charge so much for insulin and other lifesaving drugs. And then to have no yearly...
Yay! That’s a very good sign it’s going to work for you. Don’t be discouraged if you have some days of going downhill a little — that’s very common in early treatment stages, especially the first...
I’m pretty sure Humira has a foundation to help those on Medicare. Not sure what they require for income verification but if you don’t have to show an irs tax return you don’t ::have:: to declare...
I had moderna initially too and had a good immune response (am also in a study so I’ve seen my levels). I just got my 3rd dose of Moderna. I wondered the same as you — since I’d had a good response...
Most people have found that going off all meds is risky and will eventually lead to a flare. Just sayin’! Mesalamines are safe to take daily and lucky you if they will control your disease! If you...
There is a sulphate free rowasa but the regular one does contain sulphate or sulfites. Unfortunately I’ve found most UC medications to be horribly expensive — thanks to our current unregulated...
Unfortunately UC is a lifelong disease that never goes away, but does go into remission—usually with drugs. But once the drugs are stopped the disease will return. This was the hardest part of being...
Sounds frustrating!!!!!...
You’ve never been on an oral mesalamine? If rectal mesalamine works well for you as it seems to do, I would ask to try an oral mesalamine. Also ask him to prescribe a mesalamine enema....
You definitely will as you get more comfortable with the process!...
Every time you find yourself thinking a scary/nervous thought immediately remind yourself that’s it’s just a thought and not the reality and then try to imagine a positive (remission! And all you can...
I was very lucky to find relief and remission with my first biologic. I’ve read so many stories here of others that have struggled and had to switch meds multiple times. It must be exhausting and...
True story — my husband and I took the boys to the park many years ago and had just gotten ice cream cones. He was getting ready for his first lick when he felt something hit the bill of his cap —...
Wow that’s really great news! Especially given how long you struggled for your health. Yay!...
Oh and I strongly recommend a supplement plan to Medicare. As I stated above I don’t think the Plan F is available anymore but G is pretty close I believe. It’s well worth the extra expense believe...
I would check with xeljanz manufacturer to see if they have a program. Once on Medicare we are not eligible for copay programs but some manufacturers have a free program for that. For instance I get...
Haven’t been on remicade but entyvio dosing schedule is the same. The 1st 8-week stretch is not awful but you might experience a few mild symptoms. I don’t remember blood but more mild cramping. If...
You probably should check with your dr. Had your heart rate only gone up after you stopped the prednisone? If so maybe a sm amt (1 MG) could help? I know how distressing physically a heightened heart...
Keith — I have no idea! 😀...
I just got my 3rd dose of Moderna. If you tell them you’re immune compromised then you get the full dose. My husband who is not immune compromised but over 65, got the booster. I wish I’d asked for...
It’s my experience that drs will only prescribe tests they know insurance will pay for. I’ve never had a calprocten (sp?) test and very rarely the CRP test (even though I know it’s not very reliable...
Flagyl is nasty stuff for me and I now refuse to take it. It makes me extremely nauseous and gives me diarrhea — not to mention that awful metal taste. Not that it isnt a good med — doctors prescribe...
I wouldn’t worry too much about your energy levels or lack of appetite yet. It will take you time to recover from all you’ve been through. Take it easy and rest and focus on getting protein into your...
JHU runs this test: X ) 164090 SARS-CoV-2 Semi-Quantitative Total Antibody UNC runs this antibody test: Cov2Quant IgG...
Got my antibody results for John Hopkins. 6 month Check and also 3rd dose pre-check. My results from June testing were over 2500. Yesterday’s result = 1800. So they went down by a bit. Got my 3rd...
Someone may have just checked the wrong box. My initial entyvio order was written wrong with 4 loading doses instead of 3. I felt very awkward phoning the dr about it but he was very apologetic about...
You can make your own with kefir or oat/almond milk or yogurt, sunflower nut butter and banana and it blueberry or the fruit/veg of your choice. Add in collagen powder for more protein and or potato...
I believe the real issue is finding a compounding pharmacy to order it from. There were old posts on it with a mail order pharmacy but they’re probably 4-5 years ago so not sure if they’re still...
Probiotics such as culterelle are controversial as to their effectiveness. My opinion is if you’re not spending a fortune on them they can’t hurt. I take 3 different ones per day. As far as food and...
Quincy will probably pop in to offer advise re: enemas — she’s the expert and very wise but she might advise you to stay on them longer and then taper to a maintenance schedule of every 3 days....
The 2nd dose 2 hrs before procedure does sound troubling. I have to think that means it works VERY fast which sounds stressful to me. Or it could be a good thing as I’m usually on the toilet for...
I finally realized there is a difference between a “booster” and “3rd dose”. I’ve been asking about a moderna booster instead of a 3rd dose. So technically they were correct in telling me moderna...
Just did the suprep a week ago. I prefer it over the gallon. You do have to drink a lot of water with it so it’s probably as much liquid overall as the gallon. I definitely recommend drinking coconut...
Personal feeling is that entyvio has the safest profile as it’s not supposed to reduce immunity as much as some of the others. I know in the post covid vaccine studies the people on entyvio as a...
Rusty — I had a really strange “feeling” of strength the night of my first entyvio infusion (at the time I was very weak and had dropped to below 100 lbs). Kept thinking I was just wishful thinking...