I understand this. Maybe its the relief that you survived the trauma successfully and no one is any the wiser. The poops that lead to an accidentally always seem to be the most brutal, you really...
Had my second infusion today, and the doctor considers the first 3 to be the startup phase before any results are to be expected. I was almost done with the infusion when the catheter messed up and...
Doc called today to say Entyvio still isn't available because "insurance won't cover it". Their infusion center won't stock it because it is too expensive. I asked about the patient payment...
My GI mentioned needing to continue with a bridge therapy as well, something you would do while waiting for the Entyvio to start working. This may be steroids or other medications, since it may take...
Left a message with my GI stating that I've researched and found the med is available to be prescribed and that I am ready to go. They respond with "the supply isn't there yet, no insurance will...
How frustrating, I'll give them one more day to get this figured out otherwise maybe I should be seeking out a different GI? I can't see any reason why I should have to wait around suffering when the...
Just talked to my GI office today, they claimed that its still not available because the drug reps have not been to visit them to "sell it to them yet". Is this standard procedure or once the drug is...
Exciting news. I just called my GI today to check on this availability. Looks like I'll be stopping my Simponi injections since they seemed to have failed me so here's hoping they can fast track me...
Prednisone seems to cause me some amount of relief, but it no longer gets me into remission. I've found that if you've used it quite a bit in the past, there are diminishing returns. For me, if 2 or...
I too suffer from horrible, debilitating pain due to my UC. Doctor can't get my flares under control. The frustration of being told to suck it up and suffer through the pain, being treated like an...
These are brutal moments, hopefully few and far between. I've had it hit like that out of the blue on an otherwise "good" day. I think even normal folks get sudden distress and need to run to the...
Unfortunately I have had bad reaction to imuran in the past. Pancreatitis like symptoms. Hopefully this can still be a benefit for me....
My doc expressed the same notion that it takes a while for it to start working. I'm really debating whether or not to do a round of prednisone to be the bridge. Took me months to taper off the last...
Doc said he was thinking about this drug for me, but that the pharma reps haven't made their way to his office to sell it yet. I'll be waiting for his call once they do...in the meantime I was told...
After nearly a year on Simponi with some minor improvements (went from pancolitis on scope to inflammation only in the rectum and sigmoid) but still too many bathroom trips and terrible...
I didn't get any real benefit from staying on Prednisone for so long, I believe it happened due to fear of withdrawal and not really ever seeing remission. It finally took me just committing to taper...
Just wanted to say that I have finally, after many months, arrived at prednisone zero. I had been stuck at 10-15mg for so long and tapered by 1-2 mg every couple of weeks. Still enduring quite a bit...
Have you looked into nicotine patches or e-cigs? I believe some folks have had success replacing smoking with other less harmful nicotine intake methods and still benefitted from the effect....
Still taking Simponi, though I will regroup with GI tomorrow. I'm supposed to take my 7th dose on Friday so we will see. As long as I have been on it I haven't been in the hospital and I've been...
I've been curious about this and asked about it but I can't seem to get a clear answer from my GI. I've used the foam ones several years ago but can't really remember how effective they were. Is...
Glad to hear of another Simponi success! Did you do the 2 initial doses, then 1 at 2 weeks and another after 4 more weeks? Simponi initially helped my quality of life (I didn't get a full remission...
I've been having a terrible time battling rectal inflammation, with some serious pain and urgency. My doc has prescribed Anusol steroid suppositories, but I feel that they provide only maybe a 10%...
Yes, I often experience this. In fact the past week I've had a bit of a cold and my symptoms have increased. I believe it has something to do with your immune system ramping up to battle the cold and...
I am now wondering if it may be worth trying Colazal, as its one of the few remaining oral 5-ASA drugs I haven't tried. It seems like some folks the have bad reactions to one 5ASA do well on others....
I've been trying to deal with my latest UC symptoms, and I've become confused as to what approach I should take. My symptoms are urgency, BM's 6-8 times per day, mostly formed but with some mucus, no...
There are some other options in this class of drug if Remicade becomes ineffective. I got about 8 months of decent health on Remicade before it stopped working. I've switched over to Simponi and it...
Increase water and decrease sodium, is what I've been told....
I saw minor improvements a day or so after my first dose. By the 3rd or 4th dose, definite improvements, but not really "remission". Sadly, by my 8th dose or so it was doing nothing for my active...
Not all fats are inflammatory. Try eating avocados, nut butters and fish or grass fed meats. When I am trying to gain weight I try to eat a few extra spoonfuls of sunflower seed butter to add 3-400...
When I've been in situations like this, where NO drugs seem to be helping, I've found taking a week or two off from work, and just resting and resetting, can be a big help. It's often hard to get the...
Also look in to Wellbutrin...
Is there a sense of how soon these side effects come after taking a biologic dose? Would it be within days, or could you be weeks out from your last dose and develop something serious?...
Took my starter doses of Simponi today, will report on how it works for me. Sort of nerve wracking, like when I first took Remicade, every twinge or weird feeling I have in my body I fear is a tragic...
KS, I feel like I'm in the same boat as you, a different sort of flare that "feels" like some kind of infection or food poisoning. Strength is sapped, even on prednisone, which isn't working as well...
I was approved for Simponi this week and will receive my first dose in the mail tomorrow. Remicade stopped working for me after about 6 months and I'm flaring right now, trying to get off prednisone....
To get back to normal would probably depend on how long you were on the steroids. Anywhere from a few weeks to a couple of months to be free of all the side effects....
I've experienced much of the same oiliness during pred tapers. My face and back will break out when I taper down below 20mg and especially down to 10 and 0. I end up changing my sheets and pillowcase...
Thanks for the response, all very useful information. Apparently my insurance is wonderful because I was approved within one day and should be scheduling the "injection training" early next week. I...
After 8 months of Remicade, I seem to be in full on flare mode again. Was able to convince my doc to put in the paper work to try to get me on Simponi, I would be his first patient to try it. He also...
It's always useful to have a grab bag of simple things you can do to get you through those tough days. For me, when I've been feeling especially sick, or exhausted from trips to the bathroom, I'll...
Had another infusion, dose was upped to 7.5mg/kg. Still not getting to remission, but the infusion does seem to remove blood and stools seem more formed. Having a good amount of pain/urgency and...
I started Remicade in Oct of 2012, and just had my 6th I believe infusion this week. Up until the past couple of weeks, it had put me 90% of the way to remission. Sadly now, I seem to be barreling...
The doctor didn't really say anything after the exam, which I assume meant he didn't feel anything specific. He just said does it hurt here?...YES...here?...YES...here?...YESSS. I can't see any...
I flared up pretty bad and went to the ER on Friday night, the doc gave me a visual rectal exam (no finger inter ally as I said thats where I was having the worst pain). They did a CAT scan that...
I'm flaring up badly and may need to travel to my parent's house in Houston to convalesce and be there for the holidays. I am scheduled for my Remicade infusion on Thursday in Austin, but has anyone...
I start to feel the "fever" feeling at around 99.5 and higher, so it definitely seems my body is fighting something. I don't normally get UC fevers so maybe its a stomach bug, which of course are...
Also, I will be going to the doc tomorrow and see if they can come up with anything, run blood tests or whatever else. I assume its some kind of infection....
I know people ask these sorts of questions all the time, but I am having low grade fevers with some stomach aches, and painful, urgent D (the painful D was around before--UC). Was scheduled for...