When the Preds don't work...

[Weatherwax]

I've been on Pred since February and it's been working pretty marvellous for me, although nothing else has and I am now steroid dependent. Up until now I've been feeling good on steroids, I just can't taper down below 25mg or everything starts coming back.

The reason I've been on them for so long is that my consultant has been trying to find a maintenance med that will work. I am keen to get off steroids since I know about the side effects. I'm due to start Infliximab on 19 May, which I'm really hoping will work as I've heard good things about it. Surgery isn't an option for me as the Crohn's is affecting my entire small bowel pretty badly.

Only thing is, I've started feeling very Crohn-y...on 40mg of Pred. What the dickens is going on? I feel almost like I did before I started steroids - episodes of really severe abdominal pain, waves of nausea, debilitating tiredness - you all know the drill. Just minus night sweats, weight loss and a few other symptoms, and plus I still have the hunger that Pred gives you.

Do steroids commonly stop working this quickly?! I have been on a relatively high dose (between 20 and 40mg, variously) for three months. Help! I'm pretty scared - if Pred stops working for me, I have at least two weeks of suffering before I can start Infliximab, and if that doesn't work I'll be really screwed

 

[theOcean]

If you're unable to get past a certain point on your taper, I definitely think that's a sign you need stronger medication, so I'm glad you're being put on Remicade.

When I was very sick, even when I was at the highest point of my taper I felt like it did nothing to me because my illness was so severe. Be careful to watch out for fevers and night sweats, because then it may be that you have an infection and will most likely need to go to the hospital.

See how the prednisone is over the weekend, and if you're still concerned it may be for the best to go to the hospital where they would put you on solumedrol (IV form of prednisone, usually much more intense) which would hopefully help with severe inflammation for now. If you need to be there for a longer stay, they're also able to administer the Remicade there.

 

[jackkat]

Ocean, what about if the prednisone only slightly works from the get-go? I haven't even begun my taper but my symptoms are still present. I mean, the pain has reduced significantly but I'm still experiencing frequent bm's, (again, reduced from what it was), blood, diarrhea, fatigue, etc.
I'm banking on the fact that it has only been a week at the 50mg dose, despite the fact that my Dr said I should be feeling better within a couple days of beginning the steroid. Am I being impatient? Hahaha
Next week I'll begin to taper and I'm a little concerned things will just get worse ... At what point do I call my Dr? A month in? 2 months? I'll be on the pred until august.

 

[theOcean]

It can sometimes take a little longer. I'm glad to hear that your pain is reduced, but it will likely take a bit before you notice your symptoms lessening.

50mg is a pretty high dose, too. I think the highest I started my taper from was 40mg. So it miiiight be a bit of impatience on your part, but then I think you have every right to be impatient.

Basically if you notice things getting worse instead of better, it's time to call the doctor about it.

 

[jackkat]

Ahh, thanks for the response.

 

[Alley2231]

My most recent hospital stay was due to the fact that my body was no longer able to break down the pill form of Prednisone (60mg) and I was admitted to the hospital so that I could get steroids, antibiotics and fluids via IV. My doctors decided at the time too, to not discharge me from the hospital until I could get set up on Remicade, because otherwise it would be a continuous cycle of me going through the same thing over and over again.

I started Remicade on April 8th...my third infusion is in less than 2 weeks - so far I have no complaints! I'm also currently weaning off the Prednisone - I go down to 15mg tomorrow!

 

[SupportiveMom]

Prednisone is only supposed to be a temporary form of treatment until you can get on maintenance drugs like Remicade, imuran, Humira, methotrexate, etc. The longer you use it the less effective it can become. Definitely see the doc if things are getting worse.

This time around for my kid prednisone is not kicking in like it should or at least not as fast. She was previously on it for 1.5 yrs and has only been off it a month before being back on & full dosage. After 5 days it has only reduced her bathroom trips by 5 ( was at 17) & she is already on the maintenance drugs. Hoping it starts to make a more dramatic difference soon.

 

[Weatherwax]

Thanks all. SupportiveMom - your avatar is amazing.