RE Just read the BTVC

[Guest guest]

My daughter was diagnosed last June, just recently turned 18. She was originally on prednisone 60 mg, tapered off slowly and is still on 6MP 50mg. I am looking for alternative, when she started I thought it was a temporary treatment, but have since learned it is the doctors long term treatment plan. I am disappointed, while she has not had any Crohns related problems with exception of bad reaction to swine flu shot and what we believe was her 3 month flare, this drug has taken its toll. She has been sick with colds all winter, about 80% of the time, just get over one and the nextone comes along. She is following SCD strictly which is tough for a teenager, who wants to be with her friends, but we've

both grown to love the food, and even she says she only misses a few things. I don't mind spending time in the kitchen, because I believe it works. Elaine spent most of her life doing scientific research to support the SCD approach to digestive disorders. I appreciate the frank discussion of 6MP by one of the posters and I have spoken to other parents whose son or daughters were on either 6MP or remicade. . . they all have limited treatment windows depending on the individual. I think the medical community is right to use these meds to bring symptoms under control, but am wary of the long term and short term side effects. Just found a doctor in my area associated with Stanford who wrote a clinical paper about the use of immune suppressants and the necessity of patients making informed decisions and exploring alternatives and plan to get a 2nd opinion from her. I certainly

don't want my daughter to regress or become sick again, as that is what the GI indicates will happen if she stops 6MP. . . .but don't think that this is the treatment to follow. Because of her chronic colds her blood sed rates are bad, but GI indicates she can't tell if that is related to the Crohns or to the colds, and she even suggested she might need to up the 6MP dose and start entocort, another form or steroids. . . . grrrr, waiting for a window when she isn't sick with a cold to get a blood test that may provide her sed rate w/out inflamation of colds.It is tough to maneuver through this stuff, hang in there and read all you can. I've learned a boat load by reading these posts, not to mention the recipes, words of encouragement, hope, etc. Apologies for the long rant, I'm sure many of you know how I feel.daughter 17 crohns 6/09 SCD 9/096mp 50 mg

[Guest guest]

Hi

You should really look into low dose naltrexone. Alot of people on this group take it.

http://www.lowdosenaltrexone.org/

This really works for people with crohns.

Sky

To: BTVC-SCD Sent: Fri, 29 January, 2010 3:05:21 PMSubject: RE Just read the BTVC

My daughter was diagnosed last June, just recently turned 18. She was originally on prednisone 60 mg, tapered off slowly and is still on

6MP 50mg. I am looking for alternative, when she started I thought it was a temporary treatment, but have since learned it is the doctors long term

treatment plan. I am disappointed, while she has not had any Crohns related problems with exception of bad reaction to swine flu shot and what we

believe was her 3 month flare, this drug has taken its toll. She has been sick with colds all winter, about 80% of the time, just get over one and the next

one comes along. She is following SCD strictly which is tough for a teenager, who wants to be with her friends, but we've both grown to love the food, and even she says she only misses a few things. I don't mind spending time in the kitchen, because I believe it works. Elaine spent most of her life doing scientific research to support the SCD approach to digestive disorders.

I appreciate the frank discussion of 6MP by one of the posters and I have spoken to other parents whose son or daughters were on either 6MP or remicade. . . they all have limited treatment windows depending on the individual. I think the medical community is right to use these meds to bring symptoms under control, but am wary of the long term and short term side effects. Just found a doctor in my area associated with Stanford who wrote a clinical paper about the use of immune suppressants and the necessity of patients making informed decisions and exploring alternatives and plan to get a 2nd opinion from her. I certainly don't want my daughter to regress or become sick again, as that is what the GI indicates will happen if she stops 6MP. . . .but don't think that this is the treatment to follow. Because of her chronic colds her blood sed rates are bad, but GI indicates she can't tell if that is related to

the Crohns or to the colds, and she even suggested she might need to up the 6MP dose and start entocort, another form or steroids. . . . grrrr, waiting for a window when she isn't sick with a cold to get a blood test that may provide her sed rate w/out inflamation of colds.

It is tough to maneuver through this stuff, hang in there and read all you can. I've learned a boat load by reading these posts, not to mention the recipes, words of encouragement, hope, etc. Apologies for the long rant, I'm sure many of you know how I feel.

daughter 17 crohns 6/09 SCD 9/09

6mp 50 mg

Yahoo!7: Catch-up on your favourite Channel 7 TV shows easily, legally, and for free at PLUS7. Check it out.

[Guest guest]

,I agree with Sky, but your daughter would have to be completely off the 6MP before using low dose naltrexone -- they fight each other. 6MP suppresses the immune system and the LDN boosts it. BTW, while my husband was trying the 6MP he could not ever take more than 50mg every other day. Then the doctor told him she could prescribe it in 10mg capsules so that he could play with the amounts until he reached a good daily dose. He went off them and started LDN before finding that dosage though. It might be a good way to reduce her dosage VERY slowly in hopes to avoid a flare if you do want to try it. Also, if she does flare and prednisone works for her, she can start the LDN once she has tapered to 10mg and under -- even if she stays on the prednisone because

at that dosage it apparently works more as an anti-inflammatory than of an immune suppressant.AmeliaHusband UC 9 years, SCD 19 monthsLDN 3 mgTo: BTVC-SCD Sent: Fri, January 29, 2010 5:11:27 AMSubject: Re: RE Just read the BTVC

Hi

You should really look into low dose naltrexone. Alot of people on this group take it.

http://www.lowdosen altrexone. org/

This really works for people with crohns.

Sky

From: mirabella <mirabellas (AT) att (DOT) net>To: BTVC-SCD@yahoogroup s.comSent: Fri, 29 January, 2010 3:05:21 PMSubject: RE Just read the BTVC

My daughter was diagnosed last June, just recently turned 18. She was originally on prednisone 60 mg, tapered off slowly and is still on

6MP 50mg. I am looking for alternative, when she started I thought it was a temporary treatment, but have since learned it is the doctors long term

treatment plan. I am disappointed, while she has not had any Crohns related problems with exception of bad reaction to swine flu shot and what we

believe was her 3 month flare, this drug has taken its toll. She has been sick with colds all winter, about 80% of the time, just get over one and the next

one comes along. She is following SCD strictly which is tough for a teenager, who wants to be with her friends, but we've both grown to love the food, and even she says she only misses a few things. I don't mind spending time in the kitchen, because I believe it works. Elaine spent most of her life doing scientific research to support the SCD approach to digestive disorders.

I appreciate the frank discussion of 6MP by one of the posters and I have spoken to other parents whose son or daughters were on either 6MP or remicade. . . they all have limited treatment windows depending on the individual. I think the medical community is right to use these meds to bring symptoms under control, but am wary of the long term and short term side effects. Just found a doctor in my area associated with Stanford who wrote a clinical paper about the use of immune suppressants and the necessity of patients making informed decisions and exploring alternatives and plan to get a 2nd opinion from her. I certainly don't want my daughter to regress or become sick again, as that is what the GI indicates will happen if she stops 6MP. . . .but don't think that this is the treatment to follow. Because of her chronic colds her blood sed rates are bad, but GI indicates she can't tell if that is related to

the Crohns or to the colds, and she even suggested she might need to up the 6MP dose and start entocort, another form or steroids. . . . grrrr, waiting for a window when she isn't sick with a cold to get a blood test that may provide her sed rate w/out inflamation of colds.

It is tough to maneuver through this stuff, hang in there and read all you can. I've learned a boat load by reading these posts, not to mention the recipes, words of encouragement, hope, etc. Apologies for the long rant, I'm sure many of you know how I feel.

daughter 17 crohns 6/09 SCD 9/09

6mp 50 mg

Yahoo!7: Catch-up on your favourite Channel 7 TV shows easily, legally, and for free at PLUS7. Check it out.