To pred or not to pred?

[shooty]

Hi, first post here.

I had a flare up about 6 weeks ago (Crohns), nothing I would call bad but the normal loose stool, some blood and the feeling that I was waterlogged.

The GI wanted to put me onto Prednisone straight away but I was very cautious as I know people who've taken it and have read so much about it, mostly bad, that it seemed a last resort for me, especially since I had a more severe flare up 18 months ago that was stopped without pred.

Anyway, I managed to convince the GI to let me try the prednisolone retention enemas instead for 4 weeks as that is what did the trick last time. It worked well and the syptoms stopped. However, I completed the course last week and have become a little loose again, feel a little watery inside and the lower abdomen on the right hand side feels tender inside (difficult to describe).

Could this be as a result of coming off the enema? Will things settle in anyones experience or is it a sign that the inflamation is still present and I'm going to have to lump it and take the pred.

The course of preds would be 10 weeks, start at 40mg for 2 weeks then reduce by 5mg each week.

I'm just so nervous about taking this stuff. I don't wanna get fat, I don't wanna have bones like my Gran and most of all I'm concerned that once I start down this path then it's a bad thing. It seems that many start on it and have great trouble getting off it. I believe the GI wants my to switch to Azathioprine after the preds, which agains seems dangerous. I've had 10 years with no hospitalisations, only 4-5 flare ups and the whole time on ASACOL mesalasine.

Any input or nerve calming info would be appreciated.

 

[Astra]

Hi shooty
and welcome

I was diagnosed in 2005 and had never tried Pred before, but after a stint in hospital 2 months ago, due to narrowing and infection, my gastro put me on Pred, starting at 40mg and now I'm staying on 20mg, til clinic appt in April.
I was scared stiff of this drug, and very apprehensive, one reason why I joined this forum, to get other Crohnie's input.
I can honestly say, hand on heart, it's been the best thing I've done, should have done it years ago.
Ok, I've put a bit of weight on, cheeks a bit moony, bit of a tash
On high doses, I was wizzing, very energetic, jittery, eating tons, terrible insomnia,
bit irrational, impulsive, very talkative, (oh hang on, I'm always like that!)
But all that has gone now, I'm ok and have no symptoms of CD
When I tapered to 15mg I did become ill tho, with D, nausea and a lot of pain
so I upped it again to 20mg, and alls well
I've been on Az and other meds, they didn't bode well with me at all
hoping to go on Remicade next.
good luck with whatever you decide, and don't be afraid of Pred, just don't read any horror strories about it, everyone is different, and if you do get side effects, it's a small price to pay to be free from pain
oh and take calcium supps with Pred too
lotsa luv
Joan xxx

 

[shooty]

Thanks Joan.

One thing I have noticed on this forum is that there is a lot of positivity, which is refreshing.

It's just strange to find myself looking at the possibility of pred after 10 years on mesalasine and almost normal. I had a flare up 18 months ago which was far worse than the current one and it cleared up with the retention enema. It's all really confusing. I guess it may be that the mesalasine has done as much as it can and I need something stronger.

My other worry with the pred, and azathioprine is that 2 of my children have Cystic Fibrosis and I'm concerned at the risk of infection for both them and myself. My GI said that I couldn't have innoculations etc because of the immune effect of the drugs, but that would leave me open to picking up stuff and passing it onto the kids who are vulnerable.

Luke

 

[Astra]

Hi Luke
I'm not too sure about the effect of Az and Pred and your immune system on your little ones but a lot of people on the forum have mentioned how they haven't picked anything infectious up and
there is a thread on here about immuno supressants and/or the immune system, that should answer a lot of your questions
I think Pentasa (mesalazine) is quite a mild med for moderate pain so maybe it's not strong enough on it's own for you?
Hope you feel more like yourself soon
xx