I was also premedicated, with tylenol and two benadryls which really did me in. I barely made it home!! I started in June 2020, along with starting a course of budesonide at both ends. In November I...
I like Psyllium Husks but instead of the 4 per meal I start with 1 or 2 per day. That may be all that is needed....
Fish oil makes me bleed. Maybe eliminate that....
I really liked Uceris foam...
I always thought bright red was from hemmis?...
I am off to the store for Robitussin and Mucinex :-) Thanks...
thank you, I will try this...
Hey everyone, I have been suffering from especially bad nasal congestion from Stelara. My sinuses are blocked and I have almost constant post nasal drip. It's very thick. My GP prescribed a nasal...
It's definitely helping me but I think I also suffer from some side effects from it like headaches and diarrhea. Hard to tell!! I have been on it since June and am going to every 4 weeks to see if I...
I use vaseline as a protective barrier, seems to help for me....
I found some relief using an edible with a ratio of 20mg CBD to 2 mg THC. I started using only half of this dose or less. I find I sleep better and if I awake I can fall asleep easier....
I have had both of them, had the second just recently. I do have a reaction, mostly just extreme fatigue for a day or so....
I am following in your footsteps. I know that people say they wonder why they waited but on the other hand I keep seeing a lot of people with a lot of issues after surgery so... I plan on staying on...
I'm just curious how many of us also suffer from tinnitus. I always thought it was from too much loud music (and that probably didn't help) but was surprised to find out it is linked to IBD/UC....
If you are not doing too badly, I would remain on the Remicade as long as possible. I have already gone through them all and am at Stelara. Next stop is surgery. You don't know that any others will...
I like to use Psyllium Husk capsules for constipation....
Thanks for posting about the Uceris foam Butthurt! My Dr prescribed Cortifoam but it is unavailable. Am trying to get prescription changed to Uceris foam now....
Try following a low FODMAP diet. My nutritionist is recommending I do this. I was until I decided I could probably handle watermelon again. I regret that decision... ;-)...
You can get your Entyvio levels checked. They may need to increase the frequency of your infusions....
You never know. I think Stelara is working for me, after 4 years of nothing working except pred. I really hope you can find some relief. I know how it can feel so hopeless at times....
Make sure you are getting enough protein. I was not and between that and a host of medication side effects became quite malnourished. I had painful muscle spasms all over. It has taken 5 months but...
Lialda is a mesalamine so if she did not respond to Lialda it is unlikely she will respond to others. Entyvio is fairly slow acting. Prednisone does not come at no cost but it might be something to...
I had horribly debilitating muscle and joint pain from Entyvio, as well as sleep issues. I found that taking a CBC/THC gummy at bedtime was an immense help. Try whatever you can get for a sleep aid....
Maybe trying a diet with less fiber might help with your frequency....
I really like psyllium husk in gel cap form. I take one or two in the morning if I feel I need it....
I really like something called MegaFood Blood Builder. Most iron supplements have bad effects on my gut, but the only downside of this one is the initial taste (kind of metallic.) I was anemic, took...
I will probably be starting Stelara soon as well. My doctor told me you will know very quickly with Stelara whether it is working or not, ie. within a month at the most. I would be surprised if your...
I almost bought some from King Arthur flours directly about a week ago but balked at the shipping charges. They are all sold out now too....
Love the description of Whole Foods. It changed a lot when Amazon bought it out, and not for the better imho. Lots of hard to find things disappeared altogether....
CC in PA - sorry about your Mom. It's never easy, even when it's expected, and I'm sure the added stress is not helping you. I am a Canadian who is resident in the US. Just talked to a friend in...
My brother lives in South Korea and says their health care system is far superior to ours here. I think it would be incredibly selfish to travel for pleasure only when so much of the world is...
Entyvio did nothing for me, in fact I went from left sided to pan colitis, and suffered horribly from joint and muscle pains. It totally affected quality of life. Every time I suggested maybe the...
Entyvio kept my psoriasis in check, but gave me horribly debilitating joint and muscle pain. I would rather spend half my life on the toilet than go through that again....
I've had tinnitus for several years now. I always thought it was from too many concerts... Thanks UC! :-/...
Make sure you are getting enough protein. We need extra in a flare because our colon is constantly trying to rebuild itself. Too little protein can cause fatty liver disease. You should aim for...
How much Vitamin D are you taking Sara? Mine was also really low so I started taking the maximum daily dose of 5000 IU. I take it pretty much every day and my levels are never high, usually middle of...
The drug company paid portion used to count towards our deductible (one infusion and it was met!) and it seems all the biologics have payment assistance. Usually it's $5 per infusion but I found...
The lobotomy treatment is still kind of freaking me out. Medicine has come a long way.... or has it?!...
There is a company in Canada called Qu Biologics that is trying to "fix" the microbiome instead of just suppressing the immune system. I think they are on second round of trials. I am hoping they...
give yourself a few days or more to get back to a regular diet etc. It does suck not being able to just do what we want but chances are it will go back to normal once you are back in a routine....
I do the same thing - trying to piece together all the different symptoms to figure out what is going on. I don't think it's hypochondria, more like I am the one with the the most knowledge of what...
I am lucky enough to live within driving distance of Johns Hopkins and have slowly switched all my doctors there. Some are still better than others but overall I think its a better solution. I like...
I'm finding it increasingly difficult to trust doctors. Not only are they not infallible, a lot of them are either lazy or useless or worse. I obtained copies of the files from my last GI when I...
I can't believe they didn't treat the UTI?! UTI's can have all sorts of symptoms, definitely something you don't want to leave untreated. (sorry, reading just first page.) Hope this is solved...
I'm glad you posted it, I've been thinking about biologics this morning and wondering what treatment was like even 50 years ago, they didn't have all these drugs, did they just do nothing? I am...
Ausruby, how did it go with your GP? I hope you have no signs of lymphoma and the tests weren't too bad. They should be able to do some blood tests and rule things out pretty quick....
Keith - I'm switching because Entyvio just wasn't doing much, except making me hurt all over. The infusion center was at my Dr.'s office, who is definitely in network. I wouldn't just kick it to the...
We switched to Aetna from United Health Care as of Jan 1st, because my husband's employer decided to change. Up until last Friday I was supposed to be on monthly Entyvio infusions. (nb. Entyvio is...
Yes thanks Sara, I was on pred for about 2 yrs. The devil's tic tacs. No pain but I gained 50lbs which I've only managed to lose about half of. I think doctors need to not prescribe it unless it is...
Thanks Straydog. I saw a rheumatologist about 3 wks ago (had waited 9 months to finally get in!!) and just had an MRI of my hips where the pain is the worse. He suspected sacroiliitis, but there was...