I guess I’m the minority. My infusion center is on room with 8 chairs. They are 6 feet apart. There’s curtains but no one ever uses them. I kinda like watching what’s going on. I’m not a big talker...
Congrats! Always good to hear progress reports and success stories on newer meds!...
The very first GI I went to — before I got sick, for a sigmoidoscopy— now I think of it I don’t know why I had that done. I don’t think it was routine screening time but it might have been. Anyway,...
I get my migraine shots shipped direct from a specialty pharmacy. I learned through the years of doing this to try to keep a backup supply because there are always hiccups here and there. When I call...
Flares are so awful. I hope your rinvoq paperwork goes through quickly and smoothly. And hope rinvoq works for you — quickly....
🤞🤞🤞...
Six years of infusions for me. Two of the nurses have been there from the start. A 3rd came on for a few months but then she left and the “new” 3rd has been there about a year. I like them all and...
I have wonky veins too that are small and shoot off in unexpected directions and roll and blow. So to save myself from multiple sticks and bruises I always explain how they are. I’ve NEVER had a...
Medicare and social security can be so complicated and hard to understand. And the problem can be that the workers have different levels of knowledge. So it’s always important to check different...
That’s great!...
I’m so sorry you’re going through this! I hope rinvoq works quickly for you so you can get some relief!...
You should look into COBRA coverage. It will continue your current coverage until your new plan kicks in. Usually more expensive but when you have chronic conditions as we do, it’s well worth it for...
Just a note: my GI is a 45 minute drive and I was already established at my local infusion center but he was fine with me to continue getting my infusions there. The only hang up we had was he wanted...
Make an appointment now. Or several! Ask to be put on the “cancellation” list. At least you’ll have one in line because it sounds like you’re going to need it. I’m also surprised you‘ve never had a...
Have you options for other GI in your area? I really feel there’s nothing more important with this disease than a dr who listens AND reacts when you ask for help. I read my GI’s notes in my chart...
Maybe ask your nurses for their recommendation! They might have some “inside” information like knowing the nurses at some of the other places....
WooHoo! Yes I understand the joy. And like you would never share with family or friends — except my friends here who I know understand! 🤞🤞🤞 Hoping you soon have a good day - good day — bad day...
My GIs have always said 2 years. I think there’s a timeline? Maybe after 5 yr diagnosis it goes to 2 years? Not sure what it was before that. I’ve always been 2 yrs or less but could be because of...
I have no advice — just commiseration. I’ve been in remission for years now where I don’t worry about flares but have been having some “off” days lately and let me tell you, the fear and memory of...
My infusion center is run by the local hospital and does all kinds of infusions (a lot of blood transfusions) EXCEPT cancer as they have another facility dedicated to only cancer infusions. It’s...
I have no personal experience with advantage plans but have heard that they are not good for those of us with chronic diseases. Personally I would opt out and pay for a supplement myself....
Also OT: yes some Medicare supplements include a Silver Sneaker program. Not all gyms accept it nor do all the plans cover it. I know blue shield does and I think AARP also. And my gym accepts it so...
CC — Medicare can be confusing. Prices go up every year depending on your age. My initial plan cost was $125 my 1st year on Medicare. Am now paying $376 for both my husband and I (we get a discount...
National Geographic has an interesting article on this subject. Titled chronic fatigue syndrome is a puzzle. Your gut micro biome might have the key. I found the part about the gut microbiome to be...
I so remember that feeling of being so ill and tired! I’m sorry the non medication route did not work for you — but not surprised. Were you on humira and stopped it? Were you in remission? I second...
Ditto stray dog. I would switch to regular Medicare PLUS a supplement. If possible. I have Medicare along with a plan F supplement and my infusions are covered 80% by Medicare and plan F picks up the...
I think most of us fast during a flare—but not by choice. And most of us were extremely malnourished during flares. So during flares, fasting is not helpful except to control output. But during...
One point that I know is true in my case: before covid I would never have gone to the dr for the mild symptoms I was having when I ended up testing positive for the flu. Nor would the dr have tested...
🤞🤞🤞 Good luck!...
I’m of the mind that a healthy diet certainly is not going to hurt and will most likely help in lots of areas of your health. However I personally don’t believe a diet/food choices will cure UC. I...
Had my entyvio infusion today. On the way home I was all of a sudden in a mad mood. Cussed out every stupid driver (which apparently was every single driver on the road!), walked into a restaurant to...
I’m with PD! Haven’t been sick this many times in years. Although I guess I also have to say I was never that sick and wouldn’t have tested any of those times except for covid and not wanting to...
I get pretty ill for 2-3 days after covid vaccines so just one a year would be good news for me! It probably depends on how far the virus mutates though....
I was nervous stopping mine too Sara. Probably not quite as much as you though since mesalamine never put me anywhere close to remission. So I never felt it helped me that much. Good luck!...
Have you contacted entyvio patient assistance for help while you’re waiting for insurance kerfluffle to be sorted out?...
I have found that a lot of the expensive drug manufacturers have a secondary “free” program. They don’t highly advertise it, so your best bet is to call and ask what your no insurance options are....
The psyllium powder can help with constipation so you might give it a try. Constipation can cause inflammation. You could give stool softeners a try too....
Too early to stop yet IMO. Give it some time. Sometimes the flare can make you nauseous....
I had that same feeling early in when I first started entyvio. And it turned out to be a good precursor for me! Hoping for the same for you! Six years next month for me! Keep us updated....
Are you seeing a gastroenterologist? You mentioned your GP and a liver dr but not a GI. If you’re not seeing one get an appt soon, hopefully with one specializing in IBD. There are lots of new drugs...
Thanks! I am still doing well. 6 years next month! I too hope to be able to stay on infusions, mainly for financial reasons. I don’t mind them at all—they’re so quick and easy....
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...