I loved Entyvio. I was in complete remission when I was on it. Sadly it stopped working for me, but many others have been on it for years. If you have tried all the rectal and oral meds Entyvio is a...
Good to know!...
I don't know what the OPs reasons for avoiding surgery are, but for myself I want to avoid it if there is any way possible. There are so many options now and more in the pipeline. I won't let myself...
You should call your doc and tell him what is going on. You might have to increase the pred and taper more slowly. Is salofalk oral or rectal? Some people can have reactions to mesalamine or the...
If you still have blood at the end of your 5 days on 30 mg, you probably should check with your doc before tapering. Usually the pred taper starts @40 mg for 1-2 wks and then taper 5 mg a week. I...
Interesting. I wonder how women are affected. Have you tried other biologics besides remicade? There are several others plus Xeljanz. You should start to see some improvements on remicade by your 3rd...
Your doctor should give you a taper schedule. If he didn't contact him asap. For adults it's usually 1-2 weeks on 40 mg and then drop 5 mg each week there after. I have had to go up to 60 mg already...
What Western meds has she tried for UC? From what I recall she used mesalamine and steroids. Mesalamine doesn't work for everyone and some people can have a bad reaction to it that makes things a...
That's really encouraging, iPoop!! I would still love to have a test to know for sure but those links made me feel better. I had my 2nd dose of Pfizer on 3/7 so hopefully I am swimming with...
Could you tell us what her current condition is? Is she able to care for herself? Any idea how many trips to the bathroom she has a day and is it all diarrhea? Blood? Is she eating? I (and others...
So she prefers to risk her life rather than use a biologic? That sounds like where she is at after over a year of a bad flare where she has tried every natural/alternative she could find. If she is...
I want to get tested because I have read some things that say being on immune suppressant meds can prevent antibody formation. What is the name of the at home test you use and where did you get it? I...
I am so sorry that she is still doing badly. As I recall, she has tried every natural remedy anyone has ever suggested. Many of us tried to get her to give meds a try but she was very resistant to...
I believe that Stelera has a pretty good success rate with Crohn's from what people have said here at HW. There was one member who had bad problems with fistulas and Stelera not only put her in...
Eph, I am surprised that your doc wants your first biologic to be Stelara. Stelara seems to work better for Crohn's patients though it also can work for UC. Humira seems to work better for UC...
After 2nd dose of Pfizer I had extreme chills and fatigue the next day that lasted about 24 hours -- wasn't horrible. No affect on bowels....
Ditto what straydog said Are you still taking Lialda? If you stopped when you started Humira that could be the problem. Humira hasn't had time to really kick in yet...
also see this thread: https://www.healingwell.com/community/default.aspx?f=38&m=4239578&r=x#gsc.tab=0 as well as the ones Michele posted:...
Update: My arm is more sore today and I have chills, body aches and fatigue. All are fairly minor (I have felt much much worse with influenza in the past), but I did take today off work to rest. I am...
I got my 2nd dose of Pfizer this AM. So far no side effects. With the 1st shot my arm hurt more than this time. As strange as it might sound I am sorta hoping I get some mild reactions. That would...
Have you been bleeding a lot? When I was in a bad flare a few years ago I got severely anemic and would get out of breath just walking across a parking lot at my office. Once I had a blood...
When I say that blood is the last symptom to go away I mean just that.... it's the last "symptom". BMs are fully formed with normal frequency, no urgency etc. The blood lingers for a while and then...
I read the little paper with the enemas and it said that side effects "may" be similar to oral steroids but there wasn't anything definitive. Side effects listed were the same as oral. The little...
I guess I should have said that blood was always the last symptom to go away for me when in a flare. While there may still be inflammation, without having any actual symptoms my life returns to...
Entyvio stopped working for me after about 1.5 years. But many people have much longer remissions so don't get bummed by the short length that it worked for me....
P.S. Blood was always the last thing to go away when I am in a flare....
When you were on Pred did you start at 20mg and then taper? If so, I have never heard of anyone getting relief when starting at that low of a dose. The usual pred dosage for a UC flare is 40 mg for 2...
My doc is fully aware of my enema usage. He even gives me 90 day mail order prescriptions. In the past 3 years I have received 2 shipments of the enemas. Still have 2 months left of the last...
Since you have been on pred for so long you may need to taper slower -- say 1 mg at a time. I would go back up to 10 and ask your doc for a script for 1 mg tablets and then only go down 1 mg at a...
I have seen some people here saying that long term use of steroid rectals will thin the wall of the colon/rectum. Can anyone share a link on that? I have tried searching and can't find anything with...
The other thing about enemas is that if you have a swollen hemi you could be scraping it with the nozzle which could be causing the bleeding...
Hemis bleed when they get swollen and then get irritated. The steroids calm them down so they aren't swollen. To get rid of them permanently requires banding or surgery I think. Yes the suppositories...
Luna -- that is a difficult decision. You don't have any symptoms that affect your quality of life. But I understand the worries about long term inflammation. I am in a similar boat. Remi has given...
Doc never said I had to taper ... I just do that on my own lol...
You can get those steroid suppositories for just 7 days. That should be long enough to see if it resolves the blood. If it works then see about getting some to keep on hand because hemies will flare...
David -- if you can get the ok to use Entyvio that's the biologic I would recommend. It's specifically targeted to the colon so it's not systemic like the other biologics. It takes a while to work,...
A couple years ago when I was in a bad flare, mesalamine enemas stopped doing anything and only the hydrocortisone enemas helped even a little. I was on them daily for probably 6-9 months until...
I use enemas for general inflammation/maintenance, but when I see occasional bright red blood like that I assume it's my hemi and I switch to steroid suppositories for a couple days and that takes...
I just had my 1st dose of Pfizer this AM. Will post if any reaction. 2nd dose scheduled for 3/7. The nurse said that being on immune suppressant meds (Remicade) could affect whether the vaccine will...
I try hard not to have to use pred, but nothing else works when I get a bad flare. Last time I waited until I was in pretty bad shape before I asked for it. I shouldn't have waited as long as I did....
I have a hemmie that bleeds sometimes and it always freaks me out. I use a steroid suppository for a couple days and that takes care of the issue. Worth a shot to give them a try....
See if you can get some steroid suppositories (prescription). I use them for hemmis. Works for me in a couple days...
Twingirls -- I am on Remicade and checked with my doc about the timing of my infusions with the shots and he said there are no known concerns with the vaccine and Remicade. I have my 1st shot...
The biggest health group where I live opened a website today to sign up for appointments to get the vaccine for age 65 and up and those with a variety of co-morbidties (including being on immune...
I can't say I understand what this is saying so hopefully one of you more scientific folks can explain it. From what I can understand there seems to be a link from having had Epstein Barr (mono...
That's good, 3tc! Nice to know that the antibodies are lasting longer than what I had read....
I've never had a nurse do anything like that. Her job is to give you the medicine that you and your doctor agree on. Period. Since Xeljanz is completely different than other biologics I don't see why...
3tc ... do you know if you still have antibodies?...
Where do you live? I checked with my PCP and pharmacy last week and they didn't know when I could get it ... they said "maybe March". Keep us posted....
Covid is so new as a disease and the vaccine even newer I don't think anyone knows how long the antibodies will last yet. I have read that if you had Covid they think the antibodies last 7 months,...