Dr. Recommends that I start Remicade, but I'm afraid to start this medicine.

I've been diagnosed with UC for about 2 years now, and have been taking Rowasa and prednisone to keep the symptoms in check. This actually does the trick, but the problem is, everytime I try to get off prednisone, symptoms come back within a week or two and are every bit as bad as before I started taking prednisone. I guess in short, I don't appear to be healing, just controlling the symptoms while on prednisone and Rowasa. I've tried Imuran in the past, but even at a low dose it made me feel absolutely awful, so I had to stop taking it. My Dr. is pretty sure I'm simply steroid dependent now... which makes sense, and recommends treatment with Remicade.

I have read a lot of reviews that indicate that this drug (Remicade) has helped people out quite a bit, so that part I'm optimistic about. I would LOVE to not have to locate a bathroom immediately upon walking into a building. If you read the title, you already know I'm reluctant to start this medicine... here's why:

1. I'm afraid that being on this drug will result in side effects that will kill me down the road . I'm 37, so I'm not exactly young, but I don't want to have cancer when I'm 47 because I've been on Remicade for so long.

2. I am absolutely terrified of needles. Because this drug's only delivery method is infusion, I'm really, really terrified to get this drug. I know this may seem ridiculous, as a 37 year old man, most people just laugh at me and tell me to get over this, even my Dr. I don't know what to tell you though, the thought of needles makes me want to vomit on the keyboard as I type. I'm not sure there's a way to deal with this... as a former athlete, there's a lot of things I've been told to just "tough out"... but that usually involved physical exertion or effort. This is just different, I can't push harder, run faster, or lift more weights for this fear to go away. I don't know if anyone out there can even offer advice beyond "tough it out", but I am truly scared of the infusion process. If anyone has advice... it seems like I'm going to have to do this, I'll try anything (legal) to get through it.

3. The cost seems exorbitant, I have a job... but $1300 a treatment (min) isn't going to fly. My family still needs to eat and such.

Sorry I wrote so much, I'm just really nervous about having to take this drug. If you made it this far, I definitely appreciate your time. Thanks in advance for any advice you have for me. Take care,

Dennis

Long-term use of prednisone will give you irreversible side effects, such as osteoporosis, glaucoma, type ii diabetes, etc. Not a matter of if but a matter of when...

I've been on remicade nearly 2 years now, without a single side effect. I was prednisone-dependent before remicade. Thanks to remicade, I was able to get off prednisone for good after about 2-3 months of starting remi. I'm now in remission (for nearly a year now), with 1 non-urgent, normal bm a day. I did a full year of continuous prednisone and had to get off of it.

As for needle phobias, I can't advise much. You can seek help from a counselor, their are self-help books available. You can ask the nurse if she can work with you, not show it to you, or tell you when she uses it (if that'd help.

Regarding your needle phobia: there are a variety of things that may help you. Before an infusion, you can take an anti-anxiety med such as Valium or Klonopin (tho typically as a premed they use Benedryl which I don't think you can take with those meds but I'm not sure). There is also therapy. You can also ask for a port. If you're not sure what a port is, it's something they surgically attach to a vein under your skin. They use these a lot for people going thru chemo.

I think the Remicade is worth a try--much better than prednisone, which you know for sure will give you horrible short-term and long-term side effects.

As for the needles, I had a nurse one time numb the IV site with Lydocaine. It was the most comfortable IV I've ever gotten. Maybe you could request that?

garylouisville said...
What else have you tried? You've only mentioned Prednisone, Rowasa, and Imuran. Surely you must have tried oral mesalmines at some point? If not, that is really stupid of your doctor. What many people don't seem to realize is that EVERYONE is steroid dependent. If prednisone is the only drug that was given, EVERYONE would have symptoms return once the prednisone was tapered off. You need to take an EFFECTIVE maintenance med while on the prednisone to keep you in remission once the prednisone is tapered off. Since your symptoms return every time you taper off the prednisone then Rowasa all by itself obviously isn't an effective maintenance med for you. Something else should have been tried the first time your doctor realized that. That's why I asked about oral mesalamines, which should have been tried right from the very beginning anyway.

Long term prednisone use is far worse than the side effects of Remicade but I'm not convinced yet that you need Remicade. Have you tried any probiotics, supplements, or diet changes? Most all of us are on some kind of probiotic. I take three different ones. There is medical evidence some of these alternatives can work in some people and if you haven't tried the oral mesalamines as a maintenance med then you should try those first as well as some atlernatives but of course your doctor won't suggest any of those alternatives to you. You have to do them on your own. Also, many here have reported that Imuran gave them unpleasant side effects in the beginning but after being on it for a while those side effects went away. How long were you on it? Also again, you can develop antibodies to the Remicade so if you are going to be on it you should also be taking a drug such as Imuran concurrently to help stop antibodies from forming to the Remicade.

I agree, especially the part that you may eventually develop antibodies to Remicade anyway. I also agree with everyone else who are unanimous that you must not take pred long term.

Prednisone is not a maintenance med...it's a rescue drug while you find a maintenance med that works for you. I'm surprised your doc has been prescribing it for this long without discussing other drugs.

Needles...if you choose to get remicade, the infusions nurses use either 24 g or 22 g which are tiny and used in the pediatric population.

Cost...as mentioned before, there is a financial assistance program called remistart that provides up to $10,000/year towards remicade. It doesn't provide coverage for the other fees charged during the infusion but those are a fraction of the total cost.

Remicade isn't risk free. You can develop lupus, which is classified as "uncommon" but not rare. My friend with Crohn's developed lupus from remicade, and they switched her to Humira and it got better in 6 months. You can also develop aplastic anemia from it. Basically your bone marrow stops producing red blood cells and you need a marrow transplant. There's also the cancer risk the longer you're on it.

It's such a strong immuno-suppressant that it can cause mutations in WBC function leading to leukemia.

Prednisone is evil, but most of its long term horrible side effects don't kill you, they just age you. Biologics like remicade are classified as chemotherapy and come with all the serious risks. Just saying.

I found that the biggest downside to being on remicade is that I couldn't tell what other therapies were working or not. I could eat all the foods I normally shouldn't eat, and have no reaction. That's scary! You could be hurting your body and not know it because remicade suppresses the immune reaction.

I can only speak for myself but... I suffered greatly, more than most people, during this flare. It was fulminating and I was on death's door, but modern medicine did not make me better. I am one of those unfortunate people who gets all the rare side effects and little benefit. I had to claw my way back to life, with my own research and trying different things. Remicade was not useful to me, and if I had to stay on it I never would've found out the root reasons for my UC and fixed them.

But if your suffering is horrible and you want some relief, remicade will help. Just don't think of it as a cure, it's not. It's just masking the real problem.

There are no cures. Every treatment is a bandaid.

Very true Chiron, but one important thing to always remember, while on biologics your blood work is monitored fairly closely especially at the beginning and on pred it's business as usual as in you get blood work done whenever, it's not monitored. And yes, although the risks of biologics are scary (who needs Lupus, let alone on top of IBD ) but it's more rare for that to happen compared to the common ugly and often permanent side effects pred will more than likely cause....at least with biologics the scary possible side effects like Lupus are not permanent to my understanding and once off the biologic the induces Lupus symptoms goes away, you don't get that privilege with Prednisone.

Not being medicated at all while inflammation is present is even worse, it varies so much from patient to patient, some have severe inflammation and very little symptoms or at least manage fairly well with their symptoms (as posted here by a new member here not long ago in regards to her husband) and the cancer risk with having inflammation long term increases (just as biologics can possibly trigger cancer as well, but again, we're monitored while on biologics) I'm actually shocked I didn't get a cancer DX considering how long I flared with constant inflammation in my colon for 23 years straight, but apparently colon/GI tract cancer isn't in my cards so far, doesn't mean it never will be, do I consider myself lucky? Nope, I honestly don't...but that's a whole other can of worms that's pointless to open at this time.

My point is, basically IMO, it's about finding what ever works, because everything (even taking no RX) comes with some risk I'm sure at some point in some way....I find it very weirdly interesting how many people that are actually on pred at a high dose and have been for too long are so afraid of biologics, it's ironic and boggles my mind actually.

Chiron: respectfully, you were just diagnosed in 2015. This is 2015! Do you know how many people have posted here who went into remission by meds, quit, thought they had the answer with diet, and posted here weeks, months, or just a few short years with their worst flare ever? Too many to count. YouSee has a thread going right now. They were off all meds for 2 1/2 years and is now suffering horribly, hoping that Remicade will work for them. According to your signature you haven't even tapered completely off the pred yet. Right now you don't have enough time in with this disease to give credible advice that you are living proof that you have your own answer. I hope you do but only more time will tell for sure.

@chiron: I respectfully disagree. I am one whose diagnosing doctor kept taking me off my meds and I would flare. Repeatedly to the point that I had to go to the ER. If I had been managed appropriately, my disease would have likely not progressed to where it is now. Please do not discount the pharmacological treatments of UC. I don't understand why you list prednisone as a failure when you are currently tapering.

Very true Chiron, you may never flare again, there's always that slight possibility, you wouldn't be the first or last person to have that happen but it's extremely rare and if it happens that way for you that would be great, that also increases the chance that you were misDX (not saying you are) and actually don't have UC after all I mean honestly, to go from as severe as you were to completely in remission and no longer on meds using only diet to retain your remission....all within a year, holy cow, that would be every IBDers dream come true wouldn't it. Many things are possible sure, it's great to be optimistic but it's also important to be realistic and your experience differs soooooooo much from most anyone's I ever recall posting in the years that I've been a member here.

There are so many things that can mimic IBD, that would be my concern, the chance of being completely misDX sounds so much more realistic than anyone being as lucky with their "IBD experience" as you are, I hope for your sake you are simply just lucky but as you can see from all the members and daily threads, the huge majority don't share your luck sadly.

If you read all of the medical literature about UC, all of it defines UC as a chronic lifelong disease with periods of flares and periods of remissions. All of it also states that there is no cure except for surgery. The reason all sources say this is because it is the reality of the disease for just about everyone.

Experience with this disease can mean a lot and right now you only have a few short months under your belt. In the three years I have been on this forum there have been countless hundreds of people who thought they could keep their UC in remission with diet alone who later found out they were wrong. Only a very small handful have had long term success doing this. There have also been countless thousands who have tried diet alone and it did not work tor them. I hope you are one of the very lucky few where it has worked (so far) but the overwhelming odds are that you will flare again. It's just a question of when. That's not pessimistic, just reality. Right now you are going through a period of remission.