Virtually no pain but prescribed prednisone and entyvio

[LilMiss]

Hi,

I just got diagnosed with Crohns about a month ago. I pretty much don't have any pain. A little cramping here and there, usually before an urge for a bathroom run. I mostly get diarrhea around the time of my period, with 5-8 bathroom runs per day, sometimes less depending on what/how much I eat. And in between I usually actually have constipation, and also very often gas and bloating. The diahrreah started maybe 5-6 months ago. Before that I've always dealt with constipation and gas.

So I went to the doctor and I had a colonoscopy and the doctor found severe inflammation and prescribed me Prednisone. He says I will need to take it for 3+ months until I'm able to start taking Entyvio and it kicks in (he says it takes about 3 months for it to start working, and a few weeks to get approved by insurance).

All of this seems really drastic to me... It really doesn't seem bad enough to start getting hooked up to an IV of immunosuppressants for the rest or my life! And I REALLY don't want to start taking steroids! I've worked so hard to be in shape and have clear skin (i had pretty bad hormonal acne and it even left some scars on my chin, and it's finally under control). I don't want to throw all that away! Plus I'm 29 but I'm small and a lot of people think I look like a kid. It makes it hard to be taken seriously at work and with clients. I Imagine adding "chubby and pimply" to the mix is just going to make it that much harder for me to be taken seriously, and I have an important first-time client meeting coming up.

What do you guys think? Has anyone with acne problems taken prednisone? Did it make you break out? Did you gain a lot of weight?

What about entyvio? What has your experience been like?

Thank you in advance to all who reply :-/

 

[ronroush7]

Welcome. I have been on prednisone more than once. Most of the time, i eat more and gain weight . It gave me a moon face. The symptoms go away shortly after you are off the medicine. I have been on it for Crohn's disease. I am currently on Entyvio right now . I have not noticed any side effects. Wish you the best.

 

[LilMiss]

Hi ronroush7, thanks for your reply! yuycks! I do not want a moon face! How much weight did you gain and how fast? (if you don't mind me asking).

I am wondering if maybe there's something else I could try besides streroids while the entyvio kicks in... maybe some plain anti-imflamatory drugs or maybe antibiotics. I don't fully get it... if the problem is how my immune system reacts to bacteria and fungus in my gut, why not go after the bacteria and fungus, why go after my immune system?? All questions for my doctor the next time I see him I guess...

 

[emmaaaargh]

Hi LilMiss, welcome to the forum!

The problem with Crohn's, I believe, is that while the immune system seems to be over-reacting to something, there's no current consensus as to what that is, and it might even be different in different patients. That's why current treatments focus on the immune response, because we just don't know the definite cause of Crohn's yet.

If your doctor found severe inflammation, unfortunately, prednisone and a biologic like Entyvio is a pretty typical cocktail - while you might not have many symptoms, you have damage being done on the inside. If that damage is left uncontrolled, it will worsen. Eventually it will produce symptoms - but by then it might be too late to save the affected portion of the bowel, or other complications could occur. I ended up under-treating my Crohn's for years because I had no symptoms and I was afraid of biologics, and I really wish I hadn't left it so long!

I know what you mean with struggling to be taken seriously. I was diagnosed with Crohn's as a kid, and it impacted my growth pretty severely, so I'm tiny and people often think I'm a lot younger than I actually am. So I completely understand your hesitancy with the side-effects of prednisone! The good news is that the side-effects will fade once you've tapered off of the prednisone. I got a minor moon-face, but way less than I was expecting. I didn't experience acne, but it did increase my appetite, which I gave in to since I was underweight at the time. But the key point is that not all side effects are guaranteed to happen - and even if they do, they'll go away once your course of prednisone is finished. It's not forever, but it sounds like it is necessary, since you have severe inflammation.

I don't have any experience with Entyvio, so I can't help you there - but I wish you all the best and hope that your inflammation decreases soon (and that your steroid side-effects will be minimal!)

 

[LilMiss]

thank you so much for your thoughtful reply Emma! It's very nice to hear from someone in a similar situation. You are probably right and what you're saying sounds very logical and what I imagine my doctor would say... But tell me more about the moon face.. did it go away completely after you stopped taking the steroids? Or did it leave your face a little changed since it introduced fat deposits in places on your face where they didn't used to be, so even with dieting afterwards it's not quite the same?

 

[ronroush7]

You might ask your doctor about budesonide. It is a steroid but has less side effects. I have been on prednisone more than one time. This last time was not so bad but I think one time on the prednisone I weighed over 190 pounds. That occurred over several months.

 

[LilMiss]

Thanks! I will look into that!

 

[ronroush7]

Be sure to check with your doctor about that particular medicine.

 

[LilMiss]

Of course, I would have to ask the doctor first. It looks like it might not work for me though since it targets only specific locations in your intestines, and i think my inflamation is pretty spread out... also it says one of the side effects is severe acne, so not liking that. I have an appointment scheduled with my doctor in a couple weeks and i'll ask him all the questions then

 

[Maya142]

Hi and welcome!

Like Emma said, the goal with Crohn's is to get the inflammation under control before it causes damage. Over time inflammation causes scar tissue to form, which causes narrowing in the bowel. The narrowing (called a stricture) can lead to obstructions when food gets stuck. Besides being horribly painful, they are also serious and can lead to perforations, which can then lead to sepsis.

There are LOTS of other nasty complications you can develop from uncontrolled inflammation. Abscesses and fistulae are other examples, besides strictures and obstructions. Surgery is common if Crohn's is left untreated. And while you can live without your colon, you can't live without your small intestine, so it is very important to treat the Crohn's.

The way I think about it is that complications from Crohn's are common, whereas the serious complications from medications are much less common.

I am kind of surprised your GI wants to start with Entyvio - it is gut specific, so I suppose there is less risk in terms of immunosuppression and infections. But it also works better for Ulcerative Colitis. My daughter's GI (she is the one with Crohn's) actually does not use it for Crohn's anymore if she can help it. She says she occasionally uses it for mild Crohn's but that it does not work for severe Crohn's. This is at one of the best children's hospitals in the country, which has a large pediatric IBD program.

Typically most GIs start with an anti-TNF like Remicade or Humira. Remicade is often the first choice because it is very effective. It is also an infusion, given every 8 weeks after the loading doses (though it can be given up to every 4 weeks if necessary).

The good part about Remicade is that it works quickly - much more quickly than Entyvio. Usually you see improvement within 6 weeks. Entyvio, on the other hand, is a very slow acting drug. Most GIs say it takes at least SIX months to improve and it can often take up to a year.

The other drug used is Stelara. That is newer than Entyvio - I think it was approved about a year ago. It is also slow acting - it takes at least six months. But according to my daughter's GI, it is more effective than Entyvio in her experience.

In terms of Prednisone, it depends on the dose. If you are on a high dose, you are more likely to have side effects. My daughter has never gotten acne from Prednsione, but has had the other side effects - weight gain, the moon face, hunger, insomnia, moodiness etc. It's the drug we love to hate - it works well, but it has awful side effects.

In terms of the moon face, it goes away after the drug is stopped. But it can take a while to go away depending on how long you have been on steroids.

Have you considered a second opinion? It might give you more peace of mind in terms of your treatment plan. You could also ask about other biologics that might work faster, like Remicade, since those could minimize your time on steroids.

My daughter has been on steroids a LOT (about 6 months every year for 6 years) due to very severe inflammatory arthritis. She has developed lots of complications from steroids - such as Cushing's syndrome and adrenal insufficiency.

Steroids are necessary but they should be used for the shortest time possible. In hindsight, I wish we had used them less, though they probably saved her from some joint damage.

 

[LilMiss]

Thank you for taking the time to write this long and very thoughtful post. I should clarify that I have Crohn's Colitis (or that's what my doctor called it). He said it couldn't be Ulcerative Colitis because my rectum is normal and UC always presents in the rectum, but up above I have inflamation all the way up to the small intestine. I don't know if I have inflamation of the small intestine yet (the colonoscopy couldn't go up there). I went in for a CTE scan to find out but had a bad reaction to the liquid barium solution they had me drink for contrast (just got a rash) and so they didn't do the scan. I am going in for a set of x-rays (old school version of the CTE) next week and hopefully that will tell me if my small intestine is affected.

So my doctor prescribed Entyvio for a few reasons, 1 because it has the least side effects over all, since it's targeted to the gut, and 2 because it's safe for pregnancy and I am considering having children in the next couple years. I don't have any joint pain or arthritis issues that I'm aware of. I believe Humira is prescribed more to also help deal with those issues. I also talked to a friend who I recently found out has had Crohns for a while and she said she tried Remicade and Humira and they did nothing for her, but with entyvio she has been feeling ok, and at least has no side effects.

The doctor said Entyvio is starting to be used as a first line of defense since it works well and has very little side effects. It may also be different if you are working in pediatrics vs. adults. I think the idea is to induce remission with steroids and then taper off and use entyvio for maintenance.

 

[Maya142]

You are right that things are different with pediatrics and adults. However, my daughter is 21 now, so not a little kid (though she's little to me !! ).

You could ask about Uceris - that is Budesonide. I can't remember where it works but I believe for most of the colon. It has fewer side effects that Prednisone. My daughter was on Entocort for a long time - it works in the last part of the small bowel and only part of the colon, I believe. But since Uceris works for all of the colon, it might be an option for you.

Currently, the best studied biologic for pregnancy is Cimzia (which is also an anti-TNF). It does not transfer to the baby. I think Entyvio has been studied MUCH less because it is newer. It is approved for Crohn's. Here is the recent Cimzia study:

https://www.ucb.com/stories-media/P...to-infant-during-third-trimester-of-pregnancy

My kiddo was the opposite - no side effects at all with Remicade and Humira. They do work for joint pain and other issues as well as Crohn's (for example, if you have psoriasis in addition to Crohn's). With Entyvio, she did have a rare side effect - drug-induced Lupus. Ironically, it is really rare with Entyvio but of course she developed it. It was not fun - it took 6 months to recover.

Anyway, the point of it is that everybody responds differently. You may respond to Entyvio but you may not. You really can't know until you try it.

But if your goal is to minimize your time on Prednisone, then an anti-TNF would be a better option, because they do work faster. Entyvio is a slow acting drug and takes much longer to kick in than anti-TNFs.

It is true that in the adult world, the biologics used first are changing - I think Stelara and Entyvio are being used more. In the pediatric world, Remicade and Humira are still being used first.

 

[Crohn's gal since 1989]

Your diagnosis sounds so much like mine. My Crohn’s was never obvious, no extreme pain or weight fluctuations. I had a lot of frequency and diarrhea, that once controlled, I thought I was well, my GI was happy, then I had my first blockage, my second blockage, then an emergency resection surgery. My doctor said, because of my appearance and not really startling test results, I was just “simmering”. Had my doctor thrown a biological at me back then, I may have been able to avoid the surgery. The good news about prednisone is that the side effects go away. I never got moon face till my third time on them.

 

[Crohn's gal since 1989]

Your diagnosis sounds so much like mine. My Crohn’s was never obvious, no extreme pain or weight fluctuations. I had a lot of frequency and diarrhea, that once controlled, I thought I was well, my GI was happy, then I had my first blockage, my second blockage, then an emergency resection surgery. My doctor said, because of my appearance and not really startling test results, I was just “simmering”. Had my doctor thrown a biological at me back then, I may have been able to avoid the surgery. The good news about prednisone is that the side effects go away. I never got moon face till my third time on them.

 

[Jabee]

Just to reassure you, I’ve been on prednisone a number of times to deal with an acute flare, and though I gained weight (which I lost after tapering off), I never developed a moon face or acne. I also take Entocort (budesonide) and haven’t developed acne from it.

I think I remember your thread about your reaction to the CTE oral contrast; are they confident you won’t have a reaction to the barium you drink for the upper GI series? I’m wondering if an MRE would be a better option for you. I’m not familiar with the typical oral contrast for them, though, and your insurance might balk unless your GI can demonstrate a need for it (I would think an allergic reaction to the contrast would do).

 

[CallieS]

I started prednisone at 40mg daily. My whole life I have dealt with acne, but it's been under control for years. Unfortunately the prednisone made my acne flare pretty badly. My face got so oily and red and bumpy and just inflamed looking. So maybe those who are predisposed will get acne as a side effect? Who knows. The good news is that once I tapered down to a lower dose the acne went away.

As for weight gain. Yep, got that too. I gained a good 5-10 pounds, it fluctuates. I also got a moon face, but that subsided as I tapered. The weight gain is still with me. I'm normally thin, so this is a noticeable gain for me and my pants don't fit!! ugh.

I am now on 5mg daily until my biologic kicks in. I've been on 5mg for months and still have the weight gain. And if I splurge, like on vacation, it takes so much longer than normal for it to come off. I have to be very careful what I eat. I cannot wait to get completely off the prednisone!

Funny enough, budesonide gave me horrible diarrhea as a side effect. I don't normally have diarrhea at all, but once I started that medicine, I was in the bathroom constantly. I had to stop the budesonide quickly. I'd rather deal with the prednisone side effects.

As you can see, we are all different, so you really won't know how any medicine affects you until you try it.

 

[Scipio]

Hi LilMiss - One of the enigmas of Crohn's is that quite often the disease is much worse than the symptoms and vice versa. Disconnects between symptoms and disease commonly happen in both directions.

This sometimes results in disconnects between doctors and patients. Doctors know that severe disease seen via colonoscopy must be aggressively treated to reduce and prevent permanent damage to the gut and to lessen the need for surgery. Patients who don't feel too bad in the first place often question the need to risk the side effects. Conversely, patients can sometimes continue to experience awful symptoms even though the treatment has been successful and the colonoscopy shows that the inflammation and ulcers have cleared up.

This doesn't mean that doctors don't care about symptoms. Of course they hope to relieve the suffering of their patients. But multiple studies have shown that Crohn's is more effectively treated by battling the inflammation and ulcers than by battling the symptoms.

My symptoms have always been minimal, but a partial blockage of the ilem showed that I needed more aggressive treatment, so now I'm on a Stelara. As for prednisone, I was on it for a couple of months followed by two more months of budesonide and did not get acne or moon face. I know these side effects are common, but maybe you will be one of the lucky ones too.

 

[Bufford]

Lilmiss, treatments are one part of the equation but not necessarily the only route. I found treatments were good to knock down the innitial flare. Pred did a good job, so did Aza and Cipro. But over the long term they all went against me once my Crohn's was under control. Now I am older and retired which may make a difference but I don't know for sure we are all different.
Try changing up diet, and try some of the natural remedies that are found on this site. I got away from processed foods, gluten, sugary foods etc and my health is far better now. My blood pressure is well managed now and I cut my blood pressure meds in half.

 

[emmaaaargh]

thank you so much for your thoughtful reply Emma! It's very nice to hear from someone in a similar situation. You are probably right and what you're saying sounds very logical and what I imagine my doctor would say... But tell me more about the moon face.. did it go away completely after you stopped taking the steroids? Or did it leave your face a little changed since it introduced fat deposits in places on your face where they didn't used to be, so even with dieting afterwards it's not quite the same?

It did go away completely, yes. I'm very self-conscious about my face, since it's fairly round in shape (and the steroids made my self-esteem plummet since it exaggerated the whole thing), so it was something I was on the lookout for!

 

[LilMiss]

Thanks Emma! I know how you feel, I'm the same way. I gain weight in my face quickly and my face looks round unless i'm at my skinniest so I'm really self-conscious about that too