About to give in-steroids

[chrisnsteph1022]

My first (and only before last month) flare was 8 years ago. I was put on prednisone (along with asacol, imuran, flagyl). I gained 20 pounds in 2 weeks, then a combo of depression and not being able to eat anything but pasta caused me to gain another 80 pounds over 10 months. I went into remission, but didn't lose the weight. I swore then that I'd never take steroids unless I was on my death bed.

Beginning of last year, I decided enough was enough. I started losing the weight. I have now lost 78 pounds.

I started flaring at the end of November last year. My doc's first suggestion was steroids. I reminded him of my refusal to take those and we decided on a scope to see what we're dealing with. Turns out I have moderate to severe Crohn's all through my colon. He told my hubby while I was in recovery from the scope that I needed steroids along with Cimzia, but he knew I wouldn't take them. So I'm waiting on my first shipment of Cimzia.

Since my scope, things have gotten a lot worse. I'm in pain often and nauseous off and on all day. I've been throwing up for 3 days now. I'm living off tylenol and heating pads. I'm starting to reconsider the steroids. I know Cimzia isn't exactly fast-acting (from what I've read). I just don't know how much longer I can deal with these symptoms. But steroids seriously scare me. Not just the weight gain, but mood swings (I'm bipolar, but very stable currently and don't want to mess that up), night sweats. I had all that last time.

What should I do? Tough it out and deal until the Cimzia kicks in? Give in and take the steroids? I'm really torn.

 

[Nytefyre]

As much as I hate Pred, it is great short term. Or maybe a Methylprednisolone dose pack. Still has the side effects though, sorry. Not very much help. Maybe if you started taking a steroid and begin to notice some of the side effects, stop and go to plan b.

I have bipolar too, and I took a Medrol dose pack last year. I didn't have any issues. The dose packs don't = high dose steroids and once I was done-I was done. I have had issues with steroids before, too. But this is how it happened for me, haha. ymmv.

 

[Lydia]

I would do steroids. So that you feel more in control, plan to be on them for a month and start your taper after 2 weeks. Yes you may gain some weight, but a lot of pred weight is water retention anyway, and the rest you can work off when you are feeling better. Its such a double edge sword, but right now with the vomiting I would say its too risky not too. I would ask for some anti anxiety meds if you are worried about how it will affect you mentally. I will never take steroids unless they give me other meds for the side effects, because I get crazy anxiety.

The vomiting makes me think that you are so inflammed that food is getting blocked and backing up. That is really bad.

I know how hard it is to flare after a few years free of this disease. It can be hard to admit you need all these drugs when you went so long with out them.

 

[effdee]

Do you know how long it will be until you will start Cimzia? I'd do my best to make it without prednisone but, short term, it might be worth it.

When I started Cimzia, I noticed a bit of relief of my symptoms within the first few days after the first dose.

 

[chrisnsteph1022]

My GI had mentioned Entocort as an alternative to pred, so maybe I can do that and hope for fewer side effects?

I'm not sure when I'll get my Cimzia. My doc faxed the rx on Tuesday to the Cimplicity program that is run by Cimzia, where they provide the first dose free and coordinate with your insurance for refills. I called them and left a message on Friday.

 

[effdee]

Entocort shouldn't be nearly as nasty as Prednisone in terms of side effects. It doesn't get absorbed the same way Prednisone does. I can't say a lot about it firsthand as it wasn't very effective for me.

 

[sinead]

Hi Stephanie

I was on the Entcort for around a year and a half and for me I didn't have any weight gain at all. The side effects really weren't that bad, (headaches mainly but I get them anyway) at the beginning I did feel I had extra energy (that felt great). When I began to come off them I was so flat though and couldn't even get into work on time I was so tired so I went back to GP who found out my b12 was very low (now get b12 injections monthly) went on a low dose again (for a few weeks) and came off them no problem the last time.
Maybe you should give them a try instead of the Prednisone as they really don't have the same side effects.

Good luck

Sinead

 

[BLM]

Ive been flaring for over a year now....and my Prednisone and Remicade are my saving grace. Ive gained 30 lbs in two months and Im in terrible moods most the time....but my disease is managable....I think short term is awsome, and if it makes you feel better, then why not. I mean weights sucks, but being in the hospital and having surgeries bc of all the complications is not worth it.

 

[Jennifer]

Your doctor said that they wanted you to take a combination of meds, not just the Cimzia so waiting on that and hoping it does the trick by itself may not be the best course of action. As mentioned there are other steroids out there besides Prednisone which have less side effects. I'd suggest trying to get on those if you can (your GI should have a list of different ones to try).

 

[stargazer]

As someone who almost died from my disease (I landed in ICU cause it attacked my heart and my whole body went septic) I would say its better to be on Prednisone or alternative and be alive. I myself said I was never going on it again however if it meant that or be dead or close to again, I would SOOO choose Prednisone. Sorry youre so sick.

 

[chrisnsteph1022]

Well, I called my doc today and he called in a script for Entocort. It's a specialty drug so the pharmacy has to order it. It will be ready tomorrow. I'm really hoping for little to no side effects and some immediate relief from the crohn's symptoms.

 

[Jennifer]

I hope it works for you!

 

[xJillx]

Well, I called my doc today and he called in a script for Entocort. It's a specialty drug so the pharmacy has to order it. It will be ready tomorrow. I'm really hoping for little to no side effects and some immediate relief from the crohn's symptoms.

I was wondering how your were doing on Entocort? I was wondering because, like you, I am worried about the side affects of steriods, but I hear Entocort has much less side affects. I hope you are feeling better.

 

[chrisnsteph1022]

It doesn't seem to be helping yet. I'm on day 6. I've been getting a mild headache every day, but no other side effects so far.

 

[xJillx]

I am sorry it hasn't provided relief yet. Did your GI give you an idea how long it would take to kick in? Please keep us posted.