Thinking about getting on immune suppressors...thoughts?

May 15, 2009

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 15, 2009

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

To: BTVC-SCD Sent: Friday, May 15, 2009 9:44:37 PMSubject: 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.aiazeenSCD 9.5 monthsAsacol, 12mg/day, Prednisone 5mg, Imipramene 20 mg/dayUC 6 yrs

May 15, 2009

There have been some who do not get relief from the SCD. There is always the

potential for food allergies to develop with bowel problems because the gut

lining is permeable when it is inflamed. This allows undigested food proteins

to pass through the gut wall and trigger an immune response. It could be almost

any food, so you may have to try an elimination diet to identify the

troublemaker. You could try to find a Naturopath who does Vega testing if an

elimination diet is out. Usually the troublemaker is one of your favorite

foods, just because you eat it so regularly. Wouldn't you know it!

About the immune suppressors - they can cause all kinds of immune problems

including lupus, arthritis and allergies. These can revert once the suppressor

is stopped, but it can take months and it may not go away entirely. There are

commonly problems with infections that then require antibiotics as well - not

surprising when you are supressing immunity.

> aiazeen

> SCD 9.5 months

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

> UC 6 yrs

>

May 15, 2009

paul ,is LDN one?? thought I heard it was helpful and was thinking of trying it

thanks

eileen 16 months scd

>

> There have been some who do not get relief from the SCD. There is always the

potential for food allergies to develop with bowel problems because the gut

lining is permeable when it is inflamed. This allows undigested food proteins

to pass through the gut wall and trigger an immune response. It could be almost

any food, so you may have to try an elimination diet to identify the

troublemaker. You could try to find a Naturopath who does Vega testing if an

elimination diet is out. Usually the troublemaker is one of your favorite

foods, just because you eat it so regularly. Wouldn't you know it!

>

> About the immune suppressors - they can cause all kinds of immune problems

including lupus, arthritis and allergies. These can revert once the suppressor

is stopped, but it can take months and it may not go away entirely. There are

commonly problems with infections that then require antibiotics as well - not

surprising when you are supressing immunity.

>

> > aiazeen

> > SCD 9.5 months

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

> > UC 6 yrs

> >

>

May 15, 2009

No, it is not an immuno suppresser - it is an immuno-

modulater.

Mara

> paul ,is LDN one?? thought I heard it was helpful and was thinking

> of trying it thanks

> eileen 16 months scd

>

>>

>> There have been some who do not get relief from the SCD. There is

>> always the potential for food allergies to develop with bowel

>> problems because the gut lining is permeable when it is inflamed.

>> This allows undigested food proteins to pass through the gut wall

>> and trigger an immune response. It could be almost any food, so

>> you may have to try an elimination diet to identify the

>> troublemaker. You could try to find a Naturopath who does Vega

>> testing if an elimination diet is out. Usually the troublemaker is

>> one of your favorite foods, just because you eat it so regularly.

>> Wouldn't you know it!

>>

>> About the immune suppressors - they can cause all kinds of immune

>> problems including lupus, arthritis and allergies. These can

>> revert once the suppressor is stopped, but it can take months and

>> it may not go away entirely. There are commonly problems with

>> infections that then require antibiotics as well - not surprising

>> when you are supressing immunity.

>>

>>> aiazeen

>>> SCD 9.5 months

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

>>> UC 6 yrs

>>>

>>

>

> ------------------------------------

>

May 15, 2009

LDN actually enhances the immune system's response. I don't know enough about

it to offer advice, but there are a bunch of people who report good results.

You have to be careful about the formulation of the pills - apparently some

compounding pharmacies use carbonates as extenders to get the low dosage

required and that messes it up. For some more background, see:

http://www.healingwell.com/community/default.aspx?f=17&m=1461533 and

http://www.healingwell.com/community/default.aspx?f=17&p=2&m=1391276

> >>

> >> There have been some who do not get relief from the SCD. There is

> >> always the potential for food allergies to develop with bowel

> >> problems because the gut lining is permeable when it is inflamed.

> >> This allows undigested food proteins to pass through the gut wall

> >> and trigger an immune response. It could be almost any food, so

> >> you may have to try an elimination diet to identify the

> >> troublemaker. You could try to find a Naturopath who does Vega

> >> testing if an elimination diet is out. Usually the troublemaker is

> >> one of your favorite foods, just because you eat it so regularly.

> >> Wouldn't you know it!

> >>

> >> About the immune suppressors - they can cause all kinds of immune

> >> problems including lupus, arthritis and allergies. These can

> >> revert once the suppressor is stopped, but it can take months and

> >> it may not go away entirely. There are commonly problems with

> >> infections that then require antibiotics as well - not surprising

> >> when you are supressing immunity.

> >>

> >>> aiazeen

> >>> SCD 9.5 months

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

> >>> UC 6 yrs

> >>>

> >>

> >

> > ------------------------------------

> >

May 16, 2009

thanks Mara and

eileen