Sassy, took me about 4-5 for symptomatic remission on entyvio. It’s sounding like entyvio is not going to get you to where you’d like to be....
I know! Very frustrating for those who really need their meds for diabetes. I have a friend with diabetes who takes one of those drugs (not sure which) but she says her pharmacy had a priority list...
Sometimes the drs, having not lived in our shoes, don’t completely understand how hard won our wellness is. And the depth of our suffering when ill. So they don’t quite understand our fears of...
I’m not on remicade. But my opinion is to not rock the boat until it’s been stable for quite awhile. I’m thinking at least 6 months. Personally I’d go even longer than that. It’s nice to have a goal,...
It’s all the cities anymore really. There’s so many different issues at work — not enough police, crowded jails with not enough room, homeless allowed to sleep wherever they want. I do agree tho that...
When I was in Yellowstone several years ago some of the bathrooms had “universal language” stick figure signs posted. The first showed the “person” sitting on the toilet then below that the stick...
Damn that’s a helluva year! Wishing good vibes and luck!!!...
I remembered I cut and pasted some of clo’s post in a Note: Ellura cranberry pills, 36 mg soluble PAC (proanthocyanidins) from 206 mg concentrated cranberry juice concentrate extract powder...
Ps… regarding pressure to pee, clo mentioned the little brown pills — they are the only thing that gets me through the initial couple of days of a UTI. I get them by prescription but I think you can...
Michele—as I recall clo said (on advice from her dr) that it’s not the mg of the cranberry capsule but the mg of cranberry extract (cpac) they contain. I tried a search here but couldn’t find the...
It’s so weird how some medications are allowed and others aren’t. I think Entocort has never been available in US. I used to use Uceris foam, which is a budenoside foam like entocort. Is that...
Glad you are feeling better!!! I was getting very frequent and extremely painful UTIs. Dr put me on an estrogen cream every other day and also evista (raloxifene) which is a synthetic estrogen. I...
I’ve been on entyvio infusions for 7 years and do NOT want to switch to pen. Mainly due to cost (my infusions covered at no cost to me due to Medicare + supplement — and a switch to a pen would move...
It’s really scary moving up to another med. I think part of my fear was based on denial — I didn’t want to have to face the fact that this disease wasn’t going to go away on its own and I really did...
Best wishes! Just think about how nice it will be to go to sleep and not feel pain for awhile!...
Just as a data point — entyvio is considered as having the least side effects of the biologics. It is not a “death lottery”. Any medication will list all sorts of horrible possible complications....
You should have told the insurance guy that you keep detailed notes for cases like this when insurance is trying to screw you over and hoping you’ll just crawl away and disappear. 😈 well that was a...
As an aside , CC, regular Medicare with a good supplement is not confusing at all. (Well the part D prescription plans are frustrating). I don’t understand at all how it works when you still have...
So your remicade is covered under the drug program and not the regular Medicare part A? My infusions are covered under regular Medicare A 80% and then my supplement plan G picks up the other 20% and...
Dang so sorry for all the issues. Is part of it that they want to give you a biosimilar instead of remicade? I feel it’s criminal to make people go through this type of issue at the last minute....
As far as no control — I didn’t think much about your post at first and then I realized that yes this happens to me. It’s just that it’s second nature to me now and I had no idea it wasn’t “normal”....
Wonderful!!!!!...
When I have bad dreams where I’m trying to get away and can’t, I can usually attribute it to something has me worried or feeling powerless with something out of my control. I’ve never felt they were...
If entyvio works for you, you’ll love it. I’m 7 years on it now. Still in full remission with absolute zero side effects....
So far I’ve never been asked or required preauthorization for Medicare. I have blue shield as my secondary but my understanding is Medicare does not require preauthorization and your secondary has to...
Congrats! These are all very positive signs! I will have my 7 year Entyvio anniversary this month! No symptoms or side effects and my labs are all good too!...
Congrats geezer!!! Seems for those of us lucky enough to find remission, the drug responsible can differ greatly. I’m glad there are so many drugs available now but that also increases the length of...
I would ask your dr but personally I wouldn’t think it would have an effect. My UTIs generally get much better after just one day on antibiotics. I’d call in the morning and ask their advice. Oh wait...
Did you try taking a statin drug to lower your cholesterol?...
That is so nice to hear Wayne!!!!...
Chiming in to say entyvio took me four months to get to symptomatic remission (I.e. feeling good and no more accidents) but another few months to get to clinical remission (clean colonoscopy). But I...
Glad you’re feeling better clo! I don’t have joint issues — so far— except for some mild arthritis in my left hand. Once when I had surgery (damn can’t remember what for now!!!!) the anesthesiologist...
What I was told was j-pouch surgery not an option because of my age and prior partial colectomy. Total Colectomy/ostomy is another matter. And I think there are sorts of muscle tests that could...
I’ve been in remission 6 years? (Time flies!) I’ve had several scopes during this time. My last was a couple months ago and I had no symptoms after. I have had instances of cramping and spots of...
I usually do su prep — less solution to drink but still lots of water. It’s sickly sweet though and I usually can’t quite finish it all. When my husband did his colonoscopy a couple years ago they...
Midge — I had a surgery consult with a GI specialist at UCSF (because of my diverticulitis— not my UC) and she told me I was not a candidate for a j-pouch because of my age (70). I didn’t consult...
Sorry entyvio quit working for you. I hope skyrizi does the trick. Please let us know how you do....
22 pills of what?...
No blood is a good thing. Also good that you’re being proactive with enemas and food. While I don’t personally believe diet will stop a flare I do believe that some foods irritate an already...
Ditto on thanks and kudos to the mods for volunteering their time! Also thanks and best wishes to everyone here. Greatly appreciate all the support and understanding over the years. 🤗🤗...
Me too! But then I figured out other sites were loading fine. This one was soooooi slow I’d give up on it loading at all half the time. Got better the last couple of days though....
I’m so sorry for your diagnosis! I was also older and thankful to have been spared the diagnosis when I was young. That said my best advice is to find a good GI that specializes is IBD and get to...
Rusty check the ingredients on your quest bar. Inulin is a common additive in a lot of these fiber and protein bars and which is good for most people I guess. But it (inulin) gives me gas really bad....
What I figured out regarding food — for me anyway — is that when your gut is all inflamed some food is like putting salt on an open wound. It’s not that you can never eat that food again — just not...
Yes take a blanket with you next time! My facility is part of the hospital so they have a blankets and a blanket warmer! Love those warm blankets! I have tricky veins too and we always use my left...
It’s hard to feel hope when you’re looking up from rock bottom. At my worst, I dropped about 20 pounds to below 100. I was barely eating as even a sip of water would have me running for the toilet...
I’m glad you were able to vent and hope it helped you feel slightly better. I remember well feeling all those same things. It’s downright depressing feeling like a little child and having poop...
Caveat—I am not against supplements and I take several myself. But just because something is labeled a “supplement” instead of medication does not mean it’s better because it’s “natural”. There’s...
If you suspect migraines you might want to get evaluated by a dr or neurologist. I take sumatriptan for mine but there are several newer medications out there. Mine started as typical one sided...