Steroids aren't working so great anymore :(

[vickyhunter]

This is the 3rd time I've been on steroids this year, I started out at 30mg and now am on 10mg (have been tapering).

I've had Crohn's for 12 years and when I've been on them in the past they've been literally AMAZING, but they just don't seem to be working anymore.

I didn't get that "amazing" feeling this time and some of my symptoms didn't go away even on the higher doses at the beginning. Such as abdominal pain and bleeding. However, in myself I'm feeling great and have loads of energy which for me is one of the most important things.

I went for a blood test the other day for my azathiorpine and they did a CRP and ESR blood test too (inflammation markers). I got the results today and they're both quite high, indicating I'm still having a flare up.

Has anyone experienced anything similar? Steroids losing effectiveness? should I go up to a higher dose and stay on for a bit longer maybe?

Thank you for reading

Vicky xxx

 

[CollegeStudent]

Hi Vicky,

I've been on steroids 7 times and I had to go on IV-steroids on my second time for the first time to mitigate the symptoms.
It worked so well and I tapered off successfully. I know that I'm not as experienced as you are but at one point I had exhausted all my options(tried Humira, Remicade, Azathioprine, 6mp and Entocort in the past)

Later on when I flared during my 4 or 5th time, it didn't work so well. I was in a deep flare because I wasn't taking care of myself while in a flare for months and it took a while for the steroids to kick in.

It seemed like the steroids were starting to lose its effectiveness over many uses. I usually go on 40 or 60mg bring down my flares or IV solomedrol when I'm hospitalized. I have been hospitalized 6 times in the past.

But my last time on Steroids, I noticed that my flare went away in 2 days on just 30mg. But I added something, a drastic alternative medicine which I make at home, with steroids so both might have helped.

And I think our body responds different to steroids depending on the condition of the body and severity of the flare.

I recommend that you stay on the dose that you are comfortable with and stick with a simple/bland diet with no processed food of any kind for some time.
How's your diet?
Have you given a thought to other treatments?

 

[beth]

Lowering response to pred sounds like maybe surgery should be considered? Certainly you shouldn't be on pred all the time, upping the aza and adding one of the biologics perhaps might keep you from steroid dependency.

 

[DustyKat]

Matt has only been on Pred once and although it helped to a certain degree it certainly wasn't a wonder drug for him and I imagine it was because he had underlying issues that the Pred couldn't treat, that being a fistula and abscess.

While he was on the Pred and IV Hydro his CRP and ESR came down significantly but nothing even close to normal. I don't know, maybe have some further testing, imaging etc, to see if there is anything else going on to explain your lack of response?

Dusty. xxx

 

[soretum]

I was never completely symptom free on prednisone, started at the usual 40mg and tapered 5mg per week but stalled at 20mg for about a month....did have a bit more energy for a few weeks but nothing to write home about and wasn't really worth all the other side effects that made me feel really crappy....have just started Humira, had 3 doses so far including the first 2 loading doses and can honestly say that although I'm ceratinly no where near 100% yet i definitly never felt this good on prednisone, had lost hope for a while there but i now believe acheiving remission is possible, it's exciting!

 

[vickyhunter]

Hi everyone, thanks for the replies.

I got put back up to 30mg today so hopefully everything should calm down a bit more. I see my consultant in around 3-4 weeks so I'll let you know what happens.

Beth, my doctor was very reluctant about biologics although he said he may think about them if I don't get into remission on steroids (which is now unlikely), so treatment wise I don't know what's going to happen at the moment, trying not to think too much about it and just focus on feeling good at the moment.

Dusty Kat, I very recently had an MRI and it showed I have a stricture (11cm in the transverse colon) so that's probably exacerbating the situation a lot and as it's a new thing probably why I'm not responding to steroids like I used to.

soretum, never give up on the hope of remission, I was in remission for 6 years! Hopefully humira will work Fingers and toes crossed for you

xxxxxx

 

[tiloah]

How are you doing? Did upping the dose back to 30 mg help at all?

 

[Miss Jones]

It took a long time my steroids to take any kind of real effect.

 

[IAmTheWalrus]

Sometimes it took a couple of days for steroids to be effective for me, then sometimes it would take 3-4 weeks at a high dose.

For example, I was on 20 mg of pred for a month tapering 5mg every week, didn't really help, so my doctor tried it again, but this time he upped my dose to 40mg and told me to stay on that dose for 3 weeks, the next time I saw him, and about two weeks into been on such a high dose I started to feel great again and tapered very slowly over the next 4-5 months.

I found I was getting stuck at the 5mg mark, which was surprising to me, because if I tried to come off the pred all togeather I would feel my symptoms come back but when I popped a 5mg pred I'd feel AMAZING so I stead a 5mg for 2 months, no symptoms, but I still couldn't drop from a measly 5mg dose, so coupled with that and the fact I have a perianal fistula, my GI recommended I start Humira, mainly for the fistula as according to him, the longer you leave one untreated the more irreversible damage it can cause to your backside, so I decided to jump on Humira and now I'm off the pred about 1 month a half.

TL;DR

Sometimes it takes a high dose, like 40mg in my case, and staying at that dose for a few weeks for it to be effective.

Good luck, Vicky.

 

[Artificial]

Hi Vicky,

I've had the same problem, been on steroids 3 times this year, starting at 40mg every time. The first time I was on them I felt amazing for the first few weeks but after that I din't feel much better, even when going up to 40mg again :-(

Rachel x

 

[Pipergirl]

Im having the same thing right now. ive been on pred for about a month. The doctor had me tapering down from 40mg and im at 20 about to go to 15. the past couple days have been pretty bad with the stomach cramping and bleeding. Ive only known about my crohns for a little over a month so i dont know any different but the steroids worked fabulously when i first started out on them. they dont seem so great lately

 

[vickyhunter]

Thanks for the replies everyone, saw my doctor yesterday, I'm going on remicade! So happy something is getting done as a long term option.
I'm still getting really bad stomach cramps and painful BM's, bleeding mucus etc so in terms on that the steroids aren't helping massively but they're making me feel good so that's what matters most to me at the moment, being at uni and wanting a normal(ish)life etc.
I hope everyone else gets sorted very soon! Good luck to you all
xxxxxxx

 

[Jeremiah]

I find 40 or more does it for me. Anything less I go right back into flare up mode. I guess like everything our bodies build up immunity to everything. It's a shame : (

 

[evansrenewed]

I am currently on 60 mg of pred and not working.....go to GI tomorrow, hoping to try something new, maybe even IV steroids to stop the bleeding and mucos. I am so tired and fatigued all the time. Any suggestions from anyone?

 

[tiloah]

If 60 mg of Prednisone isn't getting the inflammation under control, I would think something else is going on. That high of a dose *should* work, and I would be surprised if IV steroids would do the trick at this point. Did your GI have any suggestions for you? Have you had stool cultures, imaging, a colonoscopy? Have they brought up the possibility of surgery?

I hope you find some answers and they get you under better control soon.

 

[Grumpybum]

The instant I feel the pains coming on I start with
50mg day 1
50mg day 2
37.5mg (1.5 pills) day 3
37.5mg day 4
25 day 5
12.5 day 6
5mg day 7 (maybe)
then I'm off completely. This slow weaning off has been found to be nonsense.
The real problem is as I understand it, staying on too long. The longer the less effective and dangerous the stuff is.
Also "Colofac" is useful as it slows down the contractions and allows the trapped air to gurgle backwards less painfully. You might not need a prescription for it depending on where you are.
Cheers
Stephen

 

[tiloah]

I assure you, slow weaning is NOT nonsense! It actually prevents a dangerous reaction called adrenal crisis. If you are able to taper off that quickly in a safe manner then that may be good for you, but I wouldn't advocate it. Being on the steroids for that short of a period of time seems like it wouldn't even make a dent in the inflammation anyway. But I am glad you have a system that works for you.

 

[Grumpybum]

What I was trying to say was that I see a lot of people trapped on low to medium doses and my experience has been that they just extend the the time of inflammation and people end up trapped on it. In my case I hit it with a high does and get complete relief on the second day and then wean myself of quickly so I don't get trapped. A lot of doctors seem to be reluctant to hit it quickly with a high dose and instead start out with a small dose to see if that works and if it gives a little relief up the dose a little. My thinking is that whilst the small dose might give a little relief, the causes of the current attack such as gas build up and stretching of the intestine/food passing etc are still inflaming the area and keeping the inflammation going. I found that hitting it hard with a high dose is significantly more effective.
Cheers