Culturelle vs. vsl#3

[chelsmom]

culturelle vs. vsl#3

My daughter was dx'd with crohn's a couple weeks ago, some of you might remember me from the introduction section. She has rett syndrome and is non verbal. She's been on culturelle now for 9 months and before her dx it did wonders for bloating. I'm wondering though have any of you compared it to vsl #3 as far as results? Her GI said it's a good one also, but never said to switch from culurelle to it. I see it's quite a bit more expensive but at this point we're willing to dish out the money if it treats her better.
She's been on prednisone now for 10 days, 1 week at 40 mg a day and now she's down to 30 mg a day and we started pentasa today. She doesn't seem to be improving as fast as I'd hoped with the prednisone.

Any thoughts would be appreciated, I value your input!
Thank you,
Tammy

 

[Astra]

Hi Tammy
RE; Preds
I was just wondering why your GI only put your daughter on 40mg for 1 week? I've been on 40mg for 4 weeks and tapered this week by 5mg, then I've got to reduce by 5mg every week til zero is reached.
Maybe that's why, and not really had a chance to kick in at a high dose?
Give the Pentasa a bit of time too, my GI told me it's a maintenance drug, designed to maintain a healthy gut with anti inflammatory properties.
Best of luck xxx

 

[chelsmom]

I've been wondering the same thing after reading others being on a higher dose longer then tapering 5 mg at a time. Her dose is 40 mg for 1 week (20 mg twice a day) then 30 mg for one week, 20 mg 1 week, 15, 10 and 5 all for a week. She is currently 75 pounds or 34 Kilo's so maybe the shorter dose for her size? I'm not sure.
Thanks for the info on pentasa though, it really sounds like a good med overall.
Tammy

 

[Crohn's 35]

I have never heard of anyone just quitting Prednisone and I have been on and off it for 17 years, talk to the doctor and be clear on it ok? As for the probiotics try the cheaper one and must come from the fridge, bacteria doesnt have a shelf life. If it dont work, then try VSL. Same for drugs and vitamins it is not a one size fits all. Hope one of them helps!

 

[chelsmom]

Do people stay on prednisone indefinitely? I was under the impression they need to be off more than on it? My daughters dose is for 7 weeks then off.
Thanks for the input!
Tammy

 

[Crohn's 35]

Everyone's taper is different. The usual is 40 mg and taper from 2-4 weeks down to half to full pill a week some biweekly, it depends on the severity of the disease and each Gi I different. I just had a GP from emerge say some people go down to 10-5mg and stay on the low dose for long periods. I am on it again, 40mg for 2 weeks then taper one full pill a week or 5mg's.

I have in my early years, had only 2.5mg or half a pill taper, some like it slower because it is not so hard on the body when you are young. Best in the morning too. Some doctors split half in the morning and the other half at night. Good questions to ask tho. Take care!

 

[CrohnsHobo]

I was on 40 for 6 weeks, then down to 30mg, then 20mg. I am staying on 20 for about 2-3 months!

As for the probiotics. Maybe try something like Align or Florastor which is not as expensive as the VSL.