Re: Thinking about getting on immune suppressors...thoughts?/Ann

May 17, 2009

Hi Ann,

Could you please tell me what the SCD elimination diet is? I am still having

severe symptoms after being on SCD for 7 weeks and am trying to work out whether

it's a food causing the problem.

Many thanks, Carmel NZ

Sucrase Isomaltase Deficiency

Fructose Malabsorption

SCD 24.03.09

..

>

> Hi Aiazeen,

> So sorry to hear you're having such troubles so far into the diet, could you

be eating something legal that you are intolerant of? Maybe an SCD elimination

diet could detect it? I have only tried prednisone, imuran and methotrexate of

the immune suppressant family and I prefer prednisone of all. It works great

for me but does have awful side effects, fortunately none have been permanent,

they all went away when I got off the pred. The methotrexate and imuran were

horrible for me, caused such bad headaches and vomiting I was reduced to being

bed ridden. Humira and Remicade and that family all have black box warnings and

death is the top bad side effect, so I never, ever ventured into them.

>

> What dose of pred have you tried? I see that you're at 5 mg, but that's less

than the body produces on it's own so that isn't a theraputic dose. Have

you tried high dose, 60mg or so for a period of time? That has worked for me

even with very, very serious flares.

> Wishing you the best,

>

> Ann,

> Living in Italy

> Undiagnosed Crohn's since 1977 Diagnosed 15 years

> Sacroiliitis 25 years

> Rheumatoid arthritis 25 years

> Pyoderma Gangronosum 2 years

> SCD since July, 2008

> Meds: None

>

> ________________________________

> From: aiazeen

> To: BTVC-SCD

> Sent: Friday, May 15, 2009 9:44:37 PM

> Subject: Thinking about getting on immune suppressors...thoughts?

>

> Hello all. I have moderate to severe UC in all of my lower intestine. The doc

did not go pas the Ileum last time as he said that looked fine. I think that was

stupid as I have gurgly stomach and occasional pain in the same area - all of

which feel higher and higher as the year progress. This disease has progresses,

started as only Ulcerative Proctitis six years ago. I have been on SCD for 9 1/2

months diligently. I have consulted with an SCD counselor and have continued to

modify my diet and ingredients since Feb. I have been on various doses of

Prednisone since Dec 08 and 2 1/2 months prior to that earlier in the year. My

cholesterol is through the roof which it has never been before. This is either

due to all the beef patties and cheese and/or the Prednisone or both (I try to

each low fat but I can't eat chicken). I can't eat raw vegetable either - I

can't seem to get down below 5 mg of Prednisone despite a 1mg taper every 3-4

wks when symptoms start

> to clear. I honestly have to say that I have not seen anything that gives me

indication that this diet is working. Since I have seen many on this forum

mention that it can take a long time, I agreed to give myself tow to 2 1/2 yrs

to stick with it. I am afraid that the Prednisone approach is long term harmful

and I do not want to keep roller-casting on this up and down during that whole

time. I am strongly considering immune suppressors at this point - my

understanding is that they have less side effects long term potential than

Prednisone (which is also an immune suppressor I am told). Does any one have

feedback on these type of drugs? Has anyone else experienced the same setbacks

on SCD? I could really use some direction and encouragement. I will give SCD

it's due diligence, but not at the sake of malnutrition give then mal-absorption

of the flare, high cholesterol, long term effects of Prednisone and a horrible

quality of life if an immune suppressor

> can help - Sorry to be such a rainy cloud but I am at my wits end.

>

> aiazeen

> SCD 9.5 months

> Asacol, 12mg/day, Prednisone 5mg, Imipramene 20 mg/day

> UC 6 yrs

>

May 17, 2009

Just follow the basic elimination diet but with only SCD legal foods. For the first 2 weeks eat only the intro diet, best to keep it to chicken and well cooked vegetables. Keep a journal of your symptoms. When the symptoms subside add one food in every 5 days and continue to journal how you feel. Hopefully you'll find the offending food.

Ann,

Living in Italy

Undiagnosed Crohn's since 1977 Diagnosed 15 years

Sacroiliitis 25 years

Rheumatoid arthritis 25 years

Pyoderma Gangronosum 2 years

SCD since July, 2008

Meds: None

To: BTVC-SCD Sent: Sunday, May 17, 2009 9:19:51 AMSubject: Re: Thinking about getting on immune suppressors...thoughts?/Ann

Hi Ann,Could you please tell me what the SCD elimination diet is? I am still having severe symptoms after being on SCD for 7 weeks and am trying to work out whether it's a food causing the problem. Many thanks, Carmel NZSucrase Isomaltase DeficiencyFructose MalabsorptionSCD 24.03.09.>> Hi Aiazeen,> So sorry to hear you're having such troubles so far into the diet, could you be eating something legal that you are intolerant of? Maybe an SCD elimination diet could detect it? I have only tried prednisone, imuran and methotrexate of the immune suppressant family and I prefer prednisone of all. It works great for me but does have awful side effects, fortunately none have been

permanent, they all went away when I got off the pred. The methotrexate and imuran were horrible for me, caused such bad headaches and vomiting I was reduced to being bed ridden. Humira and Remicade and that family all have black box warnings and death is the top bad side effect, so I never, ever ventured into them. > > What dose of pred have you tried? I see that you're at 5 mg, but that's less than the body produces on it's own so that isn't a theraputic dose. Have you tried high dose, 60mg or so for a period of time? That has worked for me even with very, very serious flares. > Wishing you the best, > > Ann, > Living in Italy> Undiagnosed Crohn's since 1977 Diagnosed 15 years> Sacroiliitis 25 years> Rheumatoid arthritis 25 years> Pyoderma Gangronosum 2 years> SCD since July, 2008>

Meds: None> > > > > ____________ _________ _________ __> From: aiazeen <aiazeen@... >> To: BTVC-SCD@yahoogroup s.com> Sent: Friday, May 15, 2009 9:44:37 PM> Subject: Thinking about getting on immune suppressors. ..thoughts?> > > > > > Hello all. I have moderate to severe UC in all of my lower intestine. The doc did not go pas the Ileum last time as he said that looked fine. I think that was stupid as I have gurgly stomach and occasional pain in the same area - all of which feel higher and higher as the year progress. This disease has progresses, started as only Ulcerative Proctitis six years ago. I have been on SCD for 9 1/2 months diligently. I have consulted with an SCD counselor and have continued to modify

my diet and ingredients since Feb. I have been on various doses of Prednisone since Dec 08 and 2 1/2 months prior to that earlier in the year. My cholesterol is through the roof which it has never been before. This is either due to all the beef patties and cheese and/or the Prednisone or both (I try to each low fat but I can't eat chicken). I can't eat raw vegetable either - I can't seem to get down below 5 mg of Prednisone despite a 1mg taper every 3-4 wks when symptoms start> to clear. I honestly have to say that I have not seen anything that gives me indication that this diet is working. Since I have seen many on this forum mention that it can take a long time, I agreed to give myself tow to 2 1/2 yrs to stick with it. I am afraid that the Prednisone approach is long term harmful and I do not want to keep roller-casting on this up and down during that whole time. I am strongly considering immune suppressors at this point - my understanding is

that they have less side effects long term potential than Prednisone (which is also an immune suppressor I am told). Does any one have feedback on these type of drugs? Has anyone else experienced the same setbacks on SCD? I could really use some direction and encouragement. I will give SCD it's due diligence, but not at the sake of malnutrition give then mal-absorption of the flare, high cholesterol, long term effects of Prednisone and a horrible quality of life if an immune suppressor> can help - Sorry to be such a rainy cloud but I am at my wits end.> > aiazeen> SCD 9.5 months> Asacol, 12mg/day, Prednisone 5mg, Imipramene 20 mg/day> UC 6 yrs>

May 17, 2009

Thanks Ann. I didn't think it was ok to stay on intro for more than 5 days, so I

moved on and it was probably too soon. Carmel.

> >

> > Hi Aiazeen,

> > So sorry to hear you're having such troubles so far into the diet, could you