Re: I need HELP!

March 31, 2009

It sounds like a flare due to the Pred taper to me. I am guessing you went off

too quick. Going back on would probably sort out the flare but the stomach pain

complicates things - you don't want that back.

I have emailed this info to various people before but I got off Pred doing an

extremely slow taper on my Doctor's instructions. Once I got to 10 mg per day I

tapered by 1 mg per week, and from about 5 mgs down to 0 I tapered by 1 mg per

month. This worked and I held onto my remission when it was finished but it

took over a year. From time to time during the taper I had to temporarily

increase my dose and this always worked, then I was able to go back down again.

For you I think the answer would be simple (go back on pred) if it wasn't for

the stomach pain it may be causing. I don't know what to suggest other than

talking to your Dr some more. It sounds like at this stage you need something

more than the diet to get you out of your flare.

good luck

KYlie

UC 6yrs

SCD 4 yrs

>

> I am feeling pretty helpless, I told my doc about SCD she said " Diet dosen't

matter " Anywway I have been on the diet since January 2009. I felt like it was

really helping. I had been on steriods and Asacol for a couple of weeks before

I started the diet. Well things were going pretty good while on the diet I was

closer to normal BM's and I was sticking to the diet I even started doing the

yogurt. Well time went on and my dr wanted me off the steriods. I tapered off

and I have been off them for 2 weeks because I started have pain in my stomach.

first we though it was acid nothing helped so she decided the pain was from the

steriods. well I am off and have been for a cpl of weeks now. I have blood and

the big D again. She wants to go to something like Humeria, a much stronger

drug. I have 2 sisters who had very strong reactions to that drug, I am

assuming I would too. Tell me what you think....Do you think it is the 3mo.

flair or do you think I need to go back on the steriods or should I talk to her

about somthing stronger? I just don't know what to do. I feel myself getting

weaker but then I try to convience myself that it is a flair from the diet and

will get over it. Please any innput would help me.

> thank you all for being our lifeline though this healing processs

>

March 31, 2009

Mara

Thanks for your help. I have UC. I have never gotten off the stage 1 foods yet. I don't think it is from any food being that I haven't really gotten into anything other than basic . My diet consist of boiled eggs, meats, and green beans, carrots and the yogurt. I switched to goat yogurt thinking it could be that. It dosen't seem to help. May I am one of those that the diet won't help. Do you think the LDN will help?

> I am feeling pretty helpless, I told my doc about SCD she said" > Diet dosen't matter"Shows you how much they know. And the extent to which their opinion is not closeto infallible. They often just repeat the conventional wisdom.> Anywway I have been on the diet since January 2009. I felt like it > was really helping. I had been on steriods and Asacol for a couple > of weeks before I started the diet. Well things were going pretty > good while on the diet I was closer to normal BM's and I was > sticking to the diet I even started doing the yogurt. Well time > went on and my dr wanted me off the steriods. I tapered off and I > have been off them for 2 weeks because I started have pain in my > stomach. first we though it was acid nothing helped so she decided > the pain was from the steriods. well I am

off and have been for a > cpl of weeks now. I have blood and the big D again. She wants to > go to something like Humeria, a much stronger drug. I have 2 > sisters who had very strong reactions to that drug, I am assuming I > would too. Tell me what you think....Do you think it is the 3mo. > flair or do you think I need to go back on th!> e steriods or should I talk to her about somthing stronger?It might be a combo of flare and tapering from the prednisone, or just the latter. Orthe prednisomn could have been masking your negative reaction to some particularSCD food, that now it is no longer strong enough to mask.Have you gone back to strict, strict intro and level 1 foods for several days? This may be necessary to do severaltimes as you work your way through a flare - and flares can last a long time and it can take a long while to reachieve yourprevious positive

results. So make a big pot of broth cooked for a long time and eat that and other simple foods.Do you have UC or Crohn's?You might also check out the LDN website for another drug you might take.http://health. groups.yahoo. com/group/ lowdosenaltrexon e/To find a doctor who will prescribe in your area, join that list and ask ifanyone knows one in your area.There's a lot about this in our files - use searcharchive for more specific information.For me, I think it has been the most helpful drug I've taken - hands down.If you have a family history of not doing well on humira - isn't there a way to test forsensitivity to that before you take it? Or, if your doctor is not paying attention to yourrealistic concerns, then fire her and get a new one.> I just

don't know what to do. I feel myself getting weaker but then > I try to convience myself that it is a flair from the diet and will > get over it.Well, it may or may not be - so don't convince yourself of anything, that's not a goodapproach, be aware of both possibilities. Try intro for several days tosee if that helps - but you may need other medication as well, depending on how badyour symptoms get.Mara

March 31, 2009

Thank you Alyssa

We could all use a prayer. Your support means a lot.

I am feeling pretty helpless, I told my doc about SCD she said" Diet dosen't matter" Anywway I have been on the diet since January 2009. I felt like it was really helping. I had been on steriods and Asacol for a couple of weeks before I started the diet. Well things were going pretty good while on the diet I was closer to normal BM's and I was sticking to the diet I even started doing the yogurt. Well time went on and my dr wanted me off the steriods. I tapered off and I have been off them for 2 weeks because I started have pain in my stomach. first we though it was acid nothing helped so she decided the pain was from the steriods. well I am off and have been for a cpl of weeks now. I have blood and the big D again. She wants to go to something like Humeria, a much stronger drug. I have 2 sisters who had very strong reactions to that drug, I am assuming I would too. Tell me what you think....Do you think it is the 3mo. flair or do you think I need

to go back on the steriods or should I talk to her about somthing stronger? I just don't know what to do. I feel myself getting weaker but then I try to convience myself that it is a flair from the diet and will get over it. Please any innput would help me. thank you all for being our lifeline though this healing processs

March 31, 2009

MaraThanks for your help. I have UC. I have never gotten off the stage 1 foods yet. I don't think it is from any food being that I haven't really gotten into anything other than basic . My diet consist of boiled eggs, meats, and green beans, carrots and the yogurt. I switched to goat yogurt thinking it could be that. It dosen't seem to help. May I am one of those that the diet won't help. You've already indicated that it helped you previously. But it may not be enough to do it on itsown at the moment. I would add bone broths back in - cooking them for hours - those are very healing. Have you tried dripping the yogurt? And maybe reducing the quantity. That helps some people. Also some people are sensitive to carrot. Maybe add in zucchini and spinach and take outcarrot to see if that helps. Are you taking any supplements? Do you think the LDN will help? I think there is every likelihood since it will help modulate the immune system but youwon't know until you try it. Mara> I am feeling pretty helpless, I told my doc about SCD she said" > Diet dosen't matter"Shows you how much they know. And the extent to which their opinion is not closeto infallible. They often just repeat the conventional wisdom.> Anywway I have been on the diet since January 2009. I felt like it > was really helping. I had been on steriods and Asacol for a couple > of weeks before I started the diet. Well things were going pretty > good while on the diet I was closer to normal BM's and I was > sticking to the diet I even started doing the yogurt. Well time > went on and my dr wanted me off the steriods. I tapered off and I > have been off them for 2 weeks because I started have pain in my > stomach. first we though it was acid nothing helped so she decided > the pain was from the steriods. well I am off and have been for a > cpl of weeks now. I have blood and the big D again. She wants to > go to something like Humeria, a much stronger drug. I have 2 > sisters who had very strong reactions to that drug, I am assuming I > would too. Tell me what you think....Do you think it is the 3mo. > flair or do you think I need to go back on th!> e steriods or should I talk to her about somthing stronger?It might be a combo of flare and tapering from the prednisone, or just the latter. Orthe prednisomn could have been masking your negative reaction to some particularSCD food, that now it is no longer strong enough to mask.Have you gone back to strict, strict intro and level 1 foods for several days? This may be necessary to do severaltimes as you work your way through a flare - and flares can last a long time and it can take a long while to reachieve yourprevious positive results. So make a big pot of broth cooked for a long time and eat that and other simple foods.Do you have UC or Crohn's?You might also check out the LDN website for another drug you might take.http://health. groups.yahoo. com/group/ lowdosenaltrexon e/To find a doctor who will prescribe in your area, join that list and ask ifanyone knows one in your area.There's a lot about this in our files - use searcharchive for more specific information.For me, I think it has been the most helpful drug I've taken - hands down.If you have a family history of not doing well on humira - isn't there a way to test forsensitivity to that before you take it? Or, if your doctor is not paying attention to yourrealistic concerns, then fire her and get a new one.> I just don't know what to do. I feel myself getting weaker but then > I try to convience myself that it is a flair from the diet and will > get over it.Well, it may or may not be - so don't convince yourself of anything, that's not a goodapproach, be aware of both possibilities. Try intro for several days tosee if that helps - but you may need other medication as well, depending on how badyour symptoms get.Mara

March 31, 2009