Prednisone not working- scared :(

[Elizajp]

So I have been in a flare for a little over a month now. I had been in remission for many years with a few bumps in the road here and there, managing with diet and supplements and acupuncture but off of all meds. I have a nine month old and I believe the tiredness sent me into this one. I admit I probably waited too long to see the doctor, hoping to manage everything naturally/by myself. Well, he started me on Uceris. It didn't touch the flare. He put me on 40mg prednisone last Sunday. So I've been on Prednisone a total of 11 days now.

Before starting, I had unproductive, small amounts (hope that makes sense) of diarrhea every two hours or so (including night time.) I also had bleeding, fissures from the diarrhea, pretty bad joint pain, fatigue, lost ten pounds. After starting the prednisone, I initially felt better. Joint pain went away, diarrhea decreased to mainly in the night and morning with longer periods of not going (4-6 hours) later in the day. Blood went away. Felt less "sick." But then I sort of plateaued. Today I had a lot of blood and back to going every two hours and I just feel still pretty terrible. I'm not as bad as I was pre-prednisone, but not even close to better. I'm starting to get really scared. I talked to the doctor yesterday and he said to give the prednisone until Friday. He also prescribed me Canasa but the fissures are so inflamed I can't even think about using it.

Anyway, I guess I'm just wondering what you all's experience is. Has anyone else had prednisone take awhile to really work? I'm so scared of what comes next. I've always had mild Crohns and felt like I was in such control of my health. This hit me out of nowhere. I'm still very young, married two years, and with a new baby- it scares me how sick I am and scares me to think of getting surgery or going on Remicade, etc. I know a lot of people do great with all that it's just a lot to take in right now. Does anyone have an experience like mine? Do I have good reason to hope I will start feeling better soon?

 

[Elizajp]

Also I'm very confused and overwhelmed about what else to be doing in addition to the prednisone. I had been gluten free/low sugar/no dairy except cultured dairy/organic for a long time. Like I said, I go to acupuncture and I take garden of life vitamins and probiotics. I also take fish oil. Now I'm researching so many different things. I did the SCD intro diet and felt no relief. I'm now doing regular SCD and also feel no relief. Granted, I am "cheating" with my supplements which are not all SCD legal- but then I'm hesitant to go off supplements because what if they help? Right now in addition to the multi, probiotic, and fish oil, I'm taking calcium/vit d/magnesium (to counteract pred bone loss,) vit b complex, slippery elm, and quercetin/vit c. I've considered trying L Glutamine but I know I'm just throwing so many things in the mix. I'm just kind of desperate. And then I'm also wondering if I ought to try enteral nutrition but I can't really do that if I'm doing SCD because all those shakes are SCD illegal. I'm so confused and overwhelmed. Any advice would be appreciated.

 

[Lam123]

Hi,

I have had a similar situation. I had mild crohns, during my pregnancy I didn't need any meds and felt great. After I gave birth, I was doing ok. But, when my son was 14 months old I had a flare, and like you, I think it was from all the loss of sleep, since sleep is a key part in managing my crohns. I went on prednisone. I felt better initially, but very quickly I was feeling ok, but not as good as prior. I found that the prednisone kept the crohns slightly under control. Before this time, prednisone would make me feel wonderful, that did not happen this time. So, I got it under control and managed ok for another year or so. Then another flare came and I eventually had to go on humira.

So, to answer your question, I found after giving birth, prednisone did work, but not as wonderful as in the past. I'm not sure if it was from not taking any medicine for so long, or child birth changed my body, but I seem to react the same way.
Hope this helps!

 

[Elizajp]

Thanks for your reply! That's really interesting that you experienced the same thing. I definitely felt my best while pregnant- wish it had lasted!

Did you have any options besides Humira? Like Remicade? Why did you choose Humira and what was the final straw in deciding the prednisone wasn't enough? I have heard a lot about the big drugs but haven't researched them much, mainly so I don't scare myself more :/

How quickly did Humira work for you? This is a few years down the road but we eventually want to have other kids. The big drugs scare me for that reason too. How long do you think you will be on Humira? Is it like a forever maintenance thing? Or do you sometimes take these drugs for a short time?

I'm sorry you had a similar experience! It's so tough being so sick with a little one

 

[Lam123]

I chose humira because I could inject it at home, and with having a little one at home (also my husband travels for work), I thought I might find it difficult to get to a location to get remicade put in through IV. I inject Humira every second Sunday, very easy. I made the decision to try one of the bigger drugs because I was constantly having to go on prednisone for flares and the last flare landed me in the hospital for a few days and it really bothered me to leave my baby. So, I started Humira about 3 years ago, it's a long term drug, you don't take it on and off. I have never felt better and have been free of symptoms since going on it. I don't know if you can take Humira while pregnant. You would have to ask your doctor. But, before going on a bigger drug like Humira, I took Imuran for about 10 years and it was easy. I went off when I was pregnant. When I started it after I gave birth, it no longer worked for me. You could try something like Imuran or pentasa? Have you tried those?

 

[Elizajp]

I haven't ever been on Imuran. I was on Pentasa when I was first diagnosed and I don't really know if it made a difference. The doctor prescribed me Canasa but I just can't handle using a suppository right now since the fissures hurt so bad. Imuran is pretty much like 6mp right? Did you like Imuran when you took it?

 

[Lam123]

Yes, Imuran was a very good drug for me. I took it for 8 years!

 

[vonfunk]

My first flare was my worst, I was hospitalised and on hardcore IV steroids for 3 weeks before I showed any improvement. Sometimes they can take a bit to kick in.

 

[Meganleexox]

I don't believe you can take humira with fissures at least that is what the doctor told me. I am on remicade. As for a flare up remicade has been a wonderful drug. I don't get ANY stomach pain. Some days a little bit of diarrhea but only in the morning. I have been on it for about a year now and as of two weeks ago all of my joints started to hurt. Really bad, at night is the worst. I don't know if this is a flare up as that is the only thing that is really bothering me ( no stomach pain ). I'm 22 and don't have children yet but I would like too, but just to help you out a little bit remicade is a wonderful drug and I hope you feel better

 

[CrohnsNewbie2]

Yeah I didn't feel much of a change with prednisone. Today is my last day taking it. And I got the results back for my MRI and they said there was inflammation in my stomach still. I lost weight while on this medication for some reason. I'm hoping my doctor has some ideas of how we can get this inflammation down. I'm so uncomfortable

 

[Meganleexox]

Awe sorry to here crohns newbie it's weird how you lost weight on prednisone. I gained a ton. They may be putting me back on it this week which I am not to happy about but if it helps with the pain then that's good. I'm confused how it didn't help much. Must be really painful and If you need anyone to speak to I am here to talk

 

[Weatherwax]

Eliza, you poor thing. I know what you mean about the tiredness - I notice I always feel much worse if I let myself get tired (I don't have kids so it literally is just my own fault if I let my lifestyle get unhealthy!). It makes sense, I guess, that your body would get more inflamed and irritated if it doesn't get enough rest...

For the same reason, please don't let yourself stress too much, about the flare or anything else. Including your diet (if you're being put on medicines, they'll be strong enough that supplements and so on won't really make enough of a comparative difference to throw you in or out of the flare).

You can take Remicade with fissures - actually, it can be really helpful for healing them up, or any kind of perianal disease. I have a perianal fissure/abscess (called Gordon) that's threatening to turn into a fistula, and am being put on Remicade/Infliximab soon. It sounds like it might really help me - like you, I'm very young and hope to have children, surgery is not an option, and I have heard really positive things about the drug

I know how easy it can be to slip into despair when you're flaring and think about all the things Crohn's might stop you doing. Please remember what you'll probably have learned before if you've had flares in the past - there will come a time, probably not very far into the future, when you'll feel fine and dandy, look back and wonder what you were worrying about. Try to relax, trust the docs to get you back in remission, and don't tie yourself in knots. And if there's someone you can get to help with the little one while you're ill, do - you'll be a better mummy if you let yourself rest and get better soon than if you try to do too much and stay grumpy and ill for longer!

 

[Cookie]

Hi Elizajp, I swear, you and I are in the EXACT same place right now. After years of remission and no meds, I am in the midst of my second flare in the last year and prednisone is only mildly helping me this time. I have been on it since the beginning of March, initially had some relief, but the seemed to stumble backwards as I tried to taper. I just started on Imuran and am also starting Remicade next week.

I am also dealing with a painful fissure. It seeps blood and pus all day long. The best thing that is helping me right now, as well as the last time I had one, is nitroglycerin ointment. Ask your doctor if he can prescribe it (I think it is not considered safe if you have high blood pressure or heart disease though). I had to get it from a special compounding pharmacy, but it has been a godsend. Last fall when I had one, we were planning on going on a week long camping trip in Zion and Arizona. I almost cancelled the trip because I was feeling so poorly and could not imagine camping for a week with this thing. I started the nitroglycerin treatments about 2 weeks before we left. I ended up going on the trip, hiking and climbing every day and having the most amazing time. That's how much relief it gave me. Can not recommend it enough.

 

[Elizajp]

Thank you all for your advice and thoughts! It ended up getting much worse- ended up with a hospital stay and those fissures weren't fissures- I had a huge fistula and ridiculously painful abscess! No wonder the prednisone wasn't working I got a seton placed and am now on remicade and the scd diet and slowly getting back to health, thank goodness! The lesson I learned from all this- if you suspect something is off- trust yourself! I wish I had gotten more thoroughly checked out sooner for why I was getting worse!

I wish all of you good health and healing!

Cookie- hope remicade works for you- I was so scared of it, but so thankful I went ahead. Sometimes we just have to get better!