Re: Need info on Rowasa/Canasa enemas!

[Guest guest]

I was prescribed the rowasa enemas by my doc when I wasn't doing so great. In my opinion, it was a waste of a co-payment (they are prescription only). All they are is mesalamine in an enema form instead of a time release pill like Asacol. Everyone is different, but I tried the Vit E as well and that didn't do anything for me. Pred I refused to take because the risk was far greater than reward. Since you have US, maybe try Entocort enemas? Also called cort foam enemas. I used them and they healed me overnight! I used them off and on, then used for a full month straight every night no matter how good I was feeling. Slowly weened myself off of it since it's a steroid and i've been doing great ever since. That was the straw that broke the camel's back so to speak. It got my UC in remission for the first time ever!

I pick the cort foam over prednisone with UC because prednisone effects your entire body, whereas cort foam is limited to whereever it reaches up the back door.Also, not much of it is absorbed into the blood stream so it's effects are very targeted. If you HAVE to go on steroids to stop the disease that would be my choice. Hope this helps!-UC - 1+ yearsSCD - 7 months 100% strict and 4 months restricted diet.Asacol - 5 pills a day

To: BTVC-SCD From: luckycharms@...Date: Mon, 28 Dec 2009 18:21:30 -0500Subject: Need info on Rowasa/Canasa enemas!

My parents are worried about my bloody D, so if it doesn't stop soon, I have to take prednisone =( I'm doing the vitamin E enemas, but in case those don't wipe it out, I want as much info as possible on Rowasa/Canasa (?) enemas so that they might let me try those before doing pred.Here are some questions I have:1) First of all, what's the difference? I've heard Rowasa, and Canasa both mentioned, and I don't even really know what they are.2) Have people had success with them?3) What is involved in doing them?4) How do you get it? Is it a prescription?5) Is it better than prednisone?6) Would you recommend me try them?Thanks so much for any help/info you can give me!! I don't really want to go on prednisone again =( Any other ideas on what I can do to help get my flare under control? I might be getting acupuncture this week, so maybe that will help too =)Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)No meds!

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[Guest guest]

You wrote:

 

1) First of all, what's the difference? I've heard Rowasa, and Canasa

both mentioned, and I don't even really know what they are.Rowasa is the enema, Canasa is the suppository. Both are mesalamine.

2) Have people had success with them?It always works for me, but unfortunately, I'm sensitive to it now and have side effects and can't use them. 

3) What is involved in doing them?Rowasa is pretty much the same as any other enema as far as using it goes. Canasa is a suppository, so less messy. 

4) How do you get it? Is it a prescription?Yes, prescription only. 

5) Is it better than prednisone?Is a lot less damaging in the way of side effects unless you are sensitive to it, but as said, the cortisone enemas/foam would be the next step up from Rowasa/Canasa.

6) Would you recommend me try them?If you aren't sensitive to mesalamine products, it might be worth a try.

 

Thanks so much for any help/info you can give me!! I don't really want

to go on prednisone again =( Any other ideas on what I can do to help

get my flare under control? I might be getting acupuncture this week,

so maybe that will help too =)

Peace =)

Alyssa 15 yo

UC April 2008, dx Sept 2008

SCD June 2009 (restarted)

No meds!

[Guest guest]

> My parents are worried about my bloody D, so if it doesn't stop soon,> I have to take prednisone =( I'm doing the vitamin E enemas, but in> case those don't wipe it out, I want as much info as possible on> Rowasa/Canasa (?) enemas so that they might let me try those before> doing pred.No, you don't have to take prednisone. What happened to taking LDN?Why is it so difficult for people who are having tremendous problems with the diet alone to be convinced that taking LDN with it is going to vastly change their lives for the better? It will, you know. I don't understand that attitude. You want to get well, don't you? (Not just you, Alyssa; I mean all of you who are not progressing well on the diet.) LDN with the diet is your big chance. Why would anybody allow themselves to be talked into taking steroids or any other cr*p medication that has horrific side effects when LDN works and has no bad side effects? Because your doctor hasn't heard about it? Convince him/her to let you try it. Or get it without an Rx and try it yourself. I'm frustated that so many of you aren't seizing the bull by the horns and doing this for yourselves. You'd be doing yourself the biggest favor of your life. I know, because it happened to me. There is relief out there. Seize it! Sorry to come on so strong here, but I don't really understand why so many people are avoiding this as a solution. I'm not denigrating the diet in any way, and certainly not anyone here. (I do understand the emotional ups and downs of IBDs and how vulnerable it can make you feel, not to mention the physical effects; I've had Crohn's for most of my life, and two surgeries, and all that entails.) But some people need more than the diet. A lot of people do. And LDN is the "more" that'll give you a new life. I'm not exagerating. It did for me, and thousands of others. And see the testimony from the woman who has UC that I posted a while ago.n

[Guest guest]

Hi Alyssa,

Your parents must be very worried about you. I take sulfasalazine. It has less

side effects than prednisone but takes a bit longer to work. Many people take

meds along with SCD- and as much as you don't like it, if it controls your

flares, you and your parents might feel better. Many people have later decided

to try going without meds when their symptoms have been under control for a

while.

Alyssa, you are clearly a very bright and mature young lady ( I have been most

impressed with your inquisitiveness and initiative) I am very impressed by your

family's willingness to explore all options and SCD, but I don't want your

parents to think being on SCD is exclusive of medication.

PJ

>

> >

> >

> >

> > 1) First of all, what's the difference? I've heard Rowasa, and Canasa

> > both mentioned, and I don't even really know what they are.

> >

>

> Rowasa is the enema, Canasa is the suppository. Both are mesalamine.

>

> >

> > 2) Have people had success with them?

> >

>

> It always works for me, but unfortunately, I'm sensitive to it now and have

> side effects and can't use them.

>

> >

> > 3) What is involved in doing them?

> >

>

> Rowasa is pretty much the same as any other enema as far as using it goes.

> Canasa is a suppository, so less messy.

>

> >

> > 4) How do you get it? Is it a prescription?

> >

>

> Yes, prescription only.

>

> >

> > 5) Is it better than prednisone?

> >

>

> Is a lot less damaging in the way of side effects unless you are sensitive

> to it, but as said, the cortisone enemas/foam would be the next step

> up from Rowasa/Canasa.

>

> >

> > 6) Would you recommend me try them?

> >

> If you aren't sensitive to mesalamine products, it might be worth a try.

>

>

> >

> > Thanks so much for any help/info you can give me!! I don't really want

> > to go on prednisone again =( Any other ideas on what I can do to help

> > get my flare under control? I might be getting acupuncture this week,

> > so maybe that will help too =)

> >

> > Peace =)

> > Alyssa 15 yo

> > UC April 2008, dx Sept 2008

> > SCD June 2009 (restarted)

> > No meds!

> >

> >

> >

>

[Guest guest]

I almost forgot... I took canasa as well and it didn't work. I noticed NO change in my UC with scd diet until I got rid of the flare with meds. Now, the SCD diet helps to keep me in remission, but it didn't get me there. You have a long life to live, but not a minute more should be wasted suffering when you could feel much better by taking meds... Use SCD in the long term and have your goal of eventually getting off the meds years down the road. I HATE meds as much as anyone, but they proved useful in the short term.-UC - 1+ yearsSCD - 7 months 100% strict and 4 months restricted diet.Asacol - 5 pills a dayTo: BTVC-SCD From: smdsmom2008@...Date: Tue, 29 Dec 2009 01:56:39 +0000Subject: Re: Need info on Rowasa/Canasa enemas!

Hi Alyssa,

Your parents must be very worried about you. I take sulfasalazine. It has less side effects than prednisone but takes a bit longer to work. Many people take meds along with SCD- and as much as you don't like it, if it controls your flares, you and your parents might feel better. Many people have later decided to try going without meds when their symptoms have been under control for a while.

Alyssa, you are clearly a very bright and mature young lady ( I have been most impressed with your inquisitiveness and initiative) I am very impressed by your family's willingness to explore all options and SCD, but I don't want your parents to think being on SCD is exclusive of medication.

PJ

>

> >

> >

> >

> > 1) First of all, what's the difference? I've heard Rowasa, and Canasa

> > both mentioned, and I don't even really know what they are.

> >

>

> Rowasa is the enema, Canasa is the suppository. Both are mesalamine.

>

> >

> > 2) Have people had success with them?

> >

>

> It always works for me, but unfortunately, I'm sensitive to it now and have

> side effects and can't use them.

>

> >

> > 3) What is involved in doing them?

> >

>

> Rowasa is pretty much the same as any other enema as far as using it goes.

> Canasa is a suppository, so less messy.

>

> >

> > 4) How do you get it? Is it a prescription?

> >

>

> Yes, prescription only.

>

> >

> > 5) Is it better than prednisone?

> >

>

> Is a lot less damaging in the way of side effects unless you are sensitive

> to it, but as said, the cortisone enemas/foam would be the next step

> up from Rowasa/Canasa.

>

> >

> > 6) Would you recommend me try them?

> >

> If you aren't sensitive to mesalamine products, it might be worth a try.

>

>

> >

> > Thanks so much for any help/info you can give me!! I don't really want

> > to go on prednisone again =( Any other ideas on what I can do to help

> > get my flare under control? I might be getting acupuncture this week,

> > so maybe that will help too =)

> >

> > Peace =)

> > Alyssa 15 yo

> > UC April 2008, dx Sept 2008

> > SCD June 2009 (restarted)

> > No meds!

> >

> >

> >

>

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[Guest guest]

At 06:50 PM 12/28/2009, you wrote:

Why is it so difficult for

people who are having tremendous problems with the diet alone to be

convinced that taking LDN with it is going to vastly change their lives

for the better?

n,

I think many people are aware that LDN works.

But getting it is just not that easy. My PCP has refused to

prescribe it. I'm be asking a rheumatologist next. And my oncologist

after that. Yes, I could go to AllDayChemist, but since I have several

issues right now, I would prefer to work WITH my doctors, instead of

going off half-cocked (as they would perceive it) over some Internet

fad.

I know LDN isn't a fad. I know it works. But getting a prescription is

just not that easy.

It's even harder if, like Alyssa, you are a minor child. We sometimes

forget, given how bright and capable and mature she is that she'd still a

minor, as is thus subject to her parent's decrees.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

If you HAVE to go on steroids to stop the disease that would be my choice. Hope this helps!Thanks so much for your input, I really appreciate it!! Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)No meds!

[Guest guest]

No, you don't have to take prednisone. What happened to taking LDN?Well, I might, if this flare doesn't get under control soon. I think I posted earlier that my doc said no to LDN, so that's sort of out the window.Why is it so difficult for people who are having tremendous problems with the diet alone to be convinced that taking LDN with it is going to vastly change their lives for the better? It will, you know. I don't understand that attitude. You want to get well, don't you? (Not just you, Alyssa; I mean all of you who are not progressing well on the diet.) LDN with the diet is your big chance. Why would anybody allow themselves to be talked into taking steroids or any other cr*p medication that has horrific side effects when LDN works and has no bad side effects? Because your doctor hasn't heard about it?No, because my doctor HAS heard about it, done research, and doesn't feel comfortable prescribing it since there are so few studies and it's not FDA approved for this use. Convince him/her to let you try it. Or get it without an Rx and try it yourself. I'm frustated that so many of you aren't seizing the bull by the horns and doing this for yourselves.I can't do this for myself, I'm 15! It's not like I'm going to go behind my parent's backs and buy LDN with my Christmas money. If my doctor and parents are not on board, this just isn't happening for me. And I know you aren't just talking to me, but probably others don't feel comfortable going behind their doctors' backs either. You'd be doing yourself the biggest favor of your life. I know, because it happened to me. Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)No meds!

[Guest guest]

Your parents must be very worried about you. I take sulfasalazine. It has less side effects than prednisone but takes a bit longer to work. Many people take meds along with SCD- and as much as you don't like it, if it controls your flares, you and your parents might feel better. Many people have later decided to try going without meds when their symptoms have been under control for a while.Yeah. I guess the problem is that I've never really been on the usual UC drugs, so I came into the diet already med-free. My GI put me on Asocol at first, which made my Bdy D about 20 times worse (dontcha love side effects?) and other than that, I've only been on prednisone. Me and my parents are all hesitant to try a completely new medication, so that's why prednisone is our last-resort go to.Alyssa, you are clearly a very bright and mature young lady ( I have been most impressed with your inquisitiveness and initiative) I am very impressed by your family's willingness to explore all options and SCD, but I don't want your parents to think being on SCD is exclusive of medication.Thanks PJ! I don't think my parents think SCD is a no-med diet, because they were curious about that in the beginning, so I explained to them that you could take necessary meds. They share my dislike of meds though, so that's why it's usually a last resort thing. Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)No meds!

[Guest guest]

> 1) First of all, what's the difference? I've heard Rowasa, and Canasa both

mentioned, and I don't even really know what they are.

Rowasa is an enema, Canasa is a suppository but both meds are mesalamine. I'm

not entirely sure if one would work better than the other.

> 2) Have people had success with them?

I've had success with both and found them very easy to ween off of. I can't

speak for others but I didn't suffer any side effects from either.

> 3) What is involved in doing them?

Well..you did the E enemas so the rowasa is pretty much the same processes and

the canasa is very similar but in " pill form "

> 4) How do you get it? Is it a prescription?

Yep. Prescription

> 5) Is it better than prednisone?

YES! Though I'm usually on all at once. Actually I was about your age when I

started all of them. Prednisone saved my life. However it does a number on

your body. I didn't know about the side effects when I first went on it. In a

way it's helped me become much more sensitive to knowing what's influencing my

body/mind but it's left both emotional and physical scars that are still with me

almost 15 years later. It'll make you gain weight (plus " moon face " and

" buffalo hump " ), give you insomnia, increased appetite, increased aggression,

increased depression, headaches (from the pressure from the moon face) and

increased facial hair. Those are some of the main side effects that I went

through anyway. I had a flare in June that I couldn't fix with SCD so I had to

go back on the pred but my most recent flare (no idea why these are happening!)

I was able to control. I do pretty much everything I can to stay off of it.

> 6) Would you recommend me try them?

if you have to choose between pred and rowasa/canasa, I would definitely

recommend doing either of the latter. Mesalamine definitely helped me and

rowasa and canasa can be good in that they get the meds directly to the inflamed

area. One word of caution with the rowasa though. I did fine with it for years

until the most recent prescription when my insurance company allowed me to have

the brand name rowawa. I think I responded badly to some of the inactive

ingredients but I did fine with the generic brand.

> Any other ideas on what I can do to help

> get my flare under control?

During my most recent flare I started juicing cabbage...that helped me a lot. I

mixed it with juiced strawberries and diluted it.

I hope you feel better soon! I remember exactly what it was like to go through

this in high school. Definitely take the opportunity to rest during vacation,

that helps a lot too.

Stacey

[Guest guest]

Alyssa-

> 2) Have people had success with them?

These are 5-ASA drugs.

I used Rowasa 2 weeks ago for 2 weeks during my recent flare. I flared, started

SCD which gave some relief and put things under control, then Lialda -- some

more relief, and finally Rowasa and all the symptoms went away. I have stopped

now though I still have 2 weeks of supply left.

> 5) Is it better than prednisone?

It is better than pred, in terms of side effects, but these are much less

effective. Pred is steroid and as others mentioned, is a bittersweet pill. It

will put you in remission right away.

> 6) Would you recommend me try them?

If you're flaring badly, one option is to start on pred, then as you're weaning

off, see if you can control it with 5-ASA and Rowasa . Otherwise, why not

Imuran? Imuran gave me relief for 2.5 years till 2 months ago when I drank some

poison (beer).

Another option is, there's a controlled release steroid enema on clinical

trials. See if your doc has access to it.

-Andy.

[Guest guest]

I hate medications too, and I agree with you and your parents looking at all

options. It is scary to try a new one, and really the case it that it IS trial

and error- what works great for one person may not be the case for another- but

you just don't know. Certainly the people on this board have responded

differently to the Asacol/Lialda/ Sulfasalazine medications- and some have found

that one works better than the others for them.

I know that it is scary for you, and even scarier for your parents when you have

a bad reaction to any medication.

PJ

>

> > Your parents must be very worried about you. I take sulfasalazine.

> > It has less side effects than prednisone but takes a bit longer to

> > work. Many people take meds along with SCD- and as much as you don't

> > like it, if it controls your flares, you and your parents might feel

> > better. Many people have later decided to try going without meds

> > when their symptoms have been under control for a while.

>

> Yeah. I guess the problem is that I've never really been on the usual

> UC drugs, so I came into the diet already med-free. My GI put me on

> Asocol at first, which made my Bdy D about 20 times worse (dontcha

> love side effects?) and other than that, I've only been on prednisone.

> Me and my parents are all hesitant to try a completely new medication,

> so that's why prednisone is our last-resort go to.

>

> >

> > Alyssa, you are clearly a very bright and mature young lady ( I have

> > been most impressed with your inquisitiveness and initiative) I am

> > very impressed by your family's willingness to explore all options

> > and SCD, but I don't want your parents to think being on SCD is

> > exclusive of medication.

>

>

> Thanks PJ! I don't think my parents think SCD is a no-med diet,

> because they were curious about that in the beginning, so I explained

> to them that you could take necessary meds. They share my dislike of

> meds though, so that's why it's usually a last resort thing.

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> No meds!

>

[Guest guest]

During my most recent flare I started juicing cabbage...that helped me a lot. I mixed it with juiced strawberries and diluted it.Lol! My mom is downstairs making me a juice right now with cabbage, celery, spinach, blueberries, and strawberries. It's super awesome of her to do it for me!! =) Hopefully that'll help too. Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)No meds!

[Guest guest]

looking back weren't you were too advanced early ? and not totally legal etc

maybe now that you are, you'll start to get that D under control -I hope so -

also you do have a lot of fruit still - I didn't see great results till I got

the yeast under control - sad without fruit/honey but if it gets us results -

it's worth it

i can't do LDN due to irregular heartbeat :-( oh well

also I do treat yeast with comp diflucan/nystatin at times

eileen 23 months scd

>

> > During my most recent flare I started juicing cabbage...that helped

> > me a lot. I mixed it with juiced strawberries and diluted it.

>

>

> Lol! My mom is downstairs making me a juice right now with cabbage,

> celery, spinach, blueberries, and strawberries. It's super awesome of

> her to do it for me!! =) Hopefully that'll help too.

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> No meds!

>

[Guest guest]

Hi Alyssa,

You've already received most of the basic answers to your questions, but

I'll throw in my experiences.

I believe Rowasa is an enema, and Canasa is a suppository. I used Canasa

this spring for the first time when I couldn't get my B to stop and it

stopped it within a couple of days. I stayed on it for about a month and

slowly weaned off and the B stayed away until this fall.

Regarding meds - when I was first diagnosed, my doctor prescribed

sulfasalazine. It's also the anti-inflammatory mesalamine (like Asacol,

Rowasa, Canasa, etc.), but it also includes sulfa. Some people react to

sulfa and that's why they developed Asacol, etc., which doesn't have the

sulfa. However, the sulfa itself is an anti-inflammatory and so that's

why it's been the first line drug of choice to treat UC for decades. It

worked great for me for the first year, and I would recommend giving it

a try if you're not allergic to sulfa. Even Elaine said it was the best

medication in her opinion.

It's definitely better than pred from what I can glean. I've never taken

pred and hope to avoid it due to the side effects. One option I've

considered is steroid enemas (like Cortifoam). It seems like they give

you the benefits of the steroid but since it's applied directly to the

problem area, you don't get as many side effects. But I'd only try that

if the Rowasa/Canasa approach didn't work. In short, I think the

anti-inflammatories are less prone to side effects, so it's best to

start with them. I'm actually surprised your GI doc jumped right to pred

after trying the Asacol.

Earlier this month, when I was doing the Vitamin E enemas, I was also

using Canasa. I recently had to stop the enemas and Canasa to do the

Genova stool test, but I'm starting them up again. It seemed to work for

me, but I'm just not sure how long I'll need to keep using them because

(as you probably know) the guy Sheldon that promotes the Vitamin E

enemas say it takes up to 3 months or more for them to have a lasting

effect.

Anyway, as others have said, meds can really help with our UC and we

shouldn't be afraid to use them. Once things are stable for awhile, we

can slowly try to reduce or eliminate them with the help of SCD.

Hope this helps!

Kathy

UC since 12/05

SCD since 7/07

B off and on since March '09

>

> I want as much info as possible on

> Rowasa/Canasa (?) enemas so that they might let me try those before

> doing pred.

[Guest guest]

>

Alyssa,

My son did the rowasa enemas when we would start to see any blood, and

it would clear it right up. As I remember, at first he had been in a

flare for a while, so it took a long time (month or two, I think?) to

clear up the blood. But then later, if he would start to have a flare,

he'd do this sometimes for a week, later just for a day or two, and it

would clear it up. He was so relieved to have something to stop the

flares, while he continued to recover on the diet.

He didn't seem to have a problem with doing the enemas, once he tried

it. He'd just sleep on top of a bath towel in case any leaked out, but

he never seemed to have a problem with that. It's better than

prednisone because it's not a steroid, but puts the medicine right

where it's needed. I would try it first before trying the steroid

enema, because it's a milder medicine. But if that doesn't work (after

giving it some time) and they want you to try it, I'd then try the

steroid enema to get the bleeding under control while continuing on the

diet. Don't know what Canasa is. We did the generic version of Rowasa.

Cathy

15 yo son w uc in remission

SCD 3 years

> Here are some questions I have:

> 1) First of all, what's the difference? I've heard Rowasa, and Canasa

> both mentioned, and I don't even really know what they are.

>

> 2) Have people had success with them?

>

> 3) What is involved in doing them?

>

> 4) How do you get it? Is it a prescription?

>

> 5) Is it better than prednisone?

>

> 6) Would you recommend me try them?

>

[Guest guest]

looking back weren't you were too advanced early ? and not totally legal etc maybe now that you are, you'll start to get that D under control -Well, the first time I did SCD I was really advanced and not 100% legal, but when I restarted in June I wasn't too advanced and was 100% fanatical, so that's seven strict months.I hope so - also you do have a lot of fruit still - I didn't see great results till I got the yeast under control - sad without fruit/honey but if it gets us results - it's worth itI was thinking that too. I haven't had yeast problems recently, but I think I have fructose issues so I started only eating bananas and berries for my fruit. Then when I got sick on Christmas eve I cut out honey completely and I limited my fruit to some cooked raspberry puree with my yogurt. Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)No meds!

[Guest guest]

Raspberries have a lot of seeds, what about another fruit that's cooked, peeled and deseeded to see if it makes a difference?  I love figs but just won't do it because they are dried instead of fresh which makes it that much worse!  Anything scratchy, rough, tough, etc. maybe cut out for a few days to see if it helps.  All nut butters/flours.  Just a thought.

 

I had a problem with b and finally gave up on anything with too many seeds, hulls and basically stuck with soft foods (no pork rinds or dried beans) and stayed with very young fruit/vegetables and still do that.  Even winter squash and pumpkin, watermelon, anything fibrous bothers me and I'm still too afraid to try it again.

 

Not that I'm legal (well, I'm *more* legal with each day that passes due to continuing problems but live and learn--the hard way for me sometimes). 

Debbie 40 cd

[Guest guest]

i thought illegal iron etc was recent for you??/- i have no memory lol - i'd cut

bananas too -i eat just cooked berries and that was months of nothing - may

help?//

eileen

>

> > looking back weren't you were too advanced early ? and not totally

> > legal etc maybe now that you are, you'll start to get that D under

> > control -

>

> Well, the first time I did SCD I was really advanced and not 100%

> legal, but when I restarted in June I wasn't too advanced and was 100%

> fanatical, so that's seven strict months.

>

> > I hope so - also you do have a lot of fruit still - I didn't see

> > great results till I got the yeast under control - sad without fruit/

> > honey but if it gets us results - it's worth it

>

> I was thinking that too. I haven't had yeast problems recently, but I

> think I have fructose issues so I started only eating bananas and

> berries for my fruit. Then when I got sick on Christmas eve I cut out

> honey completely and I limited my fruit to some cooked raspberry puree

> with my yogurt.

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> No meds!

>

[Guest guest]

I'm not comfortable at all with going behind my doctor's back, and hope it

doesn't come back to bite me in the butt! I started LDN the other day, and

currently feel like crap. However, I'm also going through withdrawal from

Effexor (thank you *bleepin* doctor 1 for going on a *bleepin* 3 week vacation

and leaving all your patients in a lurch, and thank YOU *bleepin* doctor 2 for

ignoring the urgent message your nurse gave you for 2 days, and then going on

*bleepin* vacation until next week.) Now I get to shop for a new PCP and NP who

show just a tiny bit more compassion for their patients. Sorry for the OT rant

:-(.

Holly

Crohn's

SCD 12/01/08

>

> And I know you aren't just talking to me, but probably others don't

> feel comfortable going behind their doctors' backs either.

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> No meds!

>

[Guest guest]

Hi Holly,

What do you mean by feeling like crap? Did you stop the Effexor cold turkey?

That will make you feel like crap. The best was is to cut the dose down slowly

and gradually over weeks-months. If you did have to stop, this would explain

your symptoms, and not be due to LDN.

Someone has to be on call for the doctor- if not, there is the ER- to give you a

prescription until your doc gets back. It is really best not to stop cold

turkey. I hope you can get a hold of some as you will feel better if you don't

stop this way.

PJ

> >

> > And I know you aren't just talking to me, but probably others don't

> > feel comfortable going behind their doctors' backs either.

> >

> > Peace =)

> > Alyssa 15 yo

> > UC April 2008, dx Sept 2008

> > SCD June 2009 (restarted)

> > No meds!

> >

>

[Guest guest]

Headache, nausea, anxiety, etc. I'm sure it was the Effexor withdrawal. I just

got my hands on a couple more pills to hold me over, but my stupid doctor still

hasn't written me a new script (his nurse told me that it was okay, that Effexor

doesn't have withdrawal side effects...HA!). I really miss my old doc (they

dropped my insurance), and can't wait to dump this new one.

As far as the LDN, I've increased it .5mg a night until I reached 4 mg last

night. I had horrible fatigue today, and looking back, the fatigue has increased

with each increase of the LDN. Is this a typical side effect? It's the only one

I have (no insomnia or anything).

Here's hoping my doctor phones in a new script tomorrow!

Holly

Crohn's

SCD 12/01/08

>

> Hi Holly,

> What do you mean by feeling like crap? Did you stop the Effexor cold turkey?

That will make you feel like crap. The best was is to cut the dose down slowly

and gradually over weeks-months. If you did have to stop, this would explain

your symptoms, and not be due to LDN.

>

> Someone has to be on call for the doctor- if not, there is the ER- to give you

a prescription until your doc gets back. It is really best not to stop cold

turkey. I hope you can get a hold of some as you will feel better if you don't

stop this way.

>

> PJ

>

[Guest guest]

Hi Holly-I can't speak on LDN but from personal experience, Effexor withdrawal is the worse thing EVER.  For me, it caused vomiting, vertigo, suicidal urges, and intense pain.  And this was after I tried tapering off by one tiny slow release bead per day (it was a real pain counting out all those tiny beads in the capsules).

Luckily, I discovered that switching fluoxetine/prozac got rid of the worst of the withdrawal symptoms.  And then withdrawing from that was fairly easy-- just some anxiety and insomnia for a few weeks.

Fluoxetine can be bought very cheaply without a prescription from Indian pharmacies such as inhousepharmacy.com.I hope this helps.

(new to this group and lurking so far)IBS/psoriasis/chronic itching

 

Headache, nausea, anxiety, etc. I'm sure it was the Effexor withdrawal. I just got my hands on a couple more pills to hold me over, but my stupid doctor still hasn't written me a new script (his nurse told me that it was okay, that Effexor doesn't have withdrawal side effects...HA!). I really miss my old doc (they dropped my insurance), and can't wait to dump this new one.

As far as the LDN, I've increased it .5mg a night until I reached 4 mg last night. I had horrible fatigue today, and looking back, the fatigue has increased with each increase of the LDN. Is this a typical side effect? It's the only one I have (no insomnia or anything).

Here's hoping my doctor phones in a new script tomorrow!

Holly

Crohn's

SCD 12/01/08

>

> Hi Holly,

> What do you mean by feeling like crap? Did you stop the Effexor cold turkey? That will make you feel like crap. The best was is to cut the dose down slowly and gradually over weeks-months. If you did have to stop, this would explain your symptoms, and not be due to LDN.

>

> Someone has to be on call for the doctor- if not, there is the ER- to give you a prescription until your doc gets back. It is really best not to stop cold turkey. I hope you can get a hold of some as you will feel better if you don't stop this way.

>

> PJ

>

[Guest guest]

Thanks for sharing ! I'm going to be getting a new " mental health " person

soon, and I'll ask them if I might be better off with a different drug then

Effexor. I've been taking it for several years, but from what I've read over

the last few days, I'm not sure it's the best thing for me. I can't believe my

PCP said I'd be fine stopping it cold turkey!

Holly

Crohn's

SCD 12/01/08

> > >

> > > Hi Holly,

> > > What do you mean by feeling like crap? Did you stop the Effexor cold

> > turkey? That will make you feel like crap. The best was is to cut the dose

> > down slowly and gradually over weeks-months. If you did have to stop, this

> > would explain your symptoms, and not be due to LDN.

> > >

> > > Someone has to be on call for the doctor- if not, there is the ER- to

> > give you a prescription until your doc gets back. It is really best not to

> > stop cold turkey. I hope you can get a hold of some as you will feel better

> > if you don't stop this way.

> > >

> > > PJ

> > >

> >

> >

> >

>