Having 2nd thoughts about Remicade

     I am feeling really nervous about my daughter being on Remicade and its side effects. I remember when my daughter was first diagnosed, I thought "no way will I ever let her go on Remicade" due to the cancer risks    And...here we are.    We have had such terrible 'luck' the past 3 years -  she was the 1% that got pancreatitis while taking mesalamines....what are her chances for developing some terrible cancer? I know that no one can answer this.  I guess I am just venting and looking for reassurance. What am I doing to my child? I wish we had more time before the first infusion so I could have tried to find a Dr. that would prescribe LDN. But who knows if in 10 years a study will come out saying LDN causes some terrible disease in children?!?!? I can't stand to watch her suffer anymore. She has not had a 'normal' life in almost 3 years. She HAS to get better NOW. She is coming into the hardest years as a teen (8th grade and then it's HIGH SCHOOL) as if the last 3 years have not been hard enough.  She missed 80% of 7th grade. Thankfully she is a smart kid and has done well in school despite missing so much of 5th, 6th and 7th grade. I want SO badly for her to get her life back and to go to a full year of 8th grade and do P.E. like all the other kids!  My husband is not a worrier like I am - he feels we need to do what is best NOW and the rest will work itself out. He's been on Remicade for 2+ yrs and it has worked 100% for him (his main symptom was fistulas) I am so scared.  But she's had 2 infusions, so what's done is done. Has anyone else felt this way?  I just don't know what to do.

MustLoveDogs,

I can't even imagine the roller coaster of feelings that you have gone trough and are still experiencing. You' re watching you child suffering, and you have to make the decisions for her (no doubt she gives her input along with your husband) and 'feeling guilty' for the potential wrong decisions. You should not.

Your beautiful and smart daughter has for some odd reason got this monster disease. She has been treated with the best medicines that modern medical care has come up with. Unfortunately not everything has worked out for her. Maybe the Remicade is it.

The fact that it's hard to find a doctor -- out of the ~700,000 -- to prescribe the LDN for people ought to tell you something. I'm certain that if the LDN or some other 'medicine' had been found to be the med or 'cure' for UC, the gastroenterogists would have discovered it and used it. ( I know, they're slow to accept new ideas.)

I've had several serious discussions with my GI group about the supplements and 'miracle drugs' over the years. I'm not a UC'er that goes after the 'miracle cures' anymore, but there were years I hunted them down all around the world. MY GI docs pretty much say that once a UCer has reached the point of 6MP and Remicade, these alternative meds of all kinds hardly can do better than the strongest medicines.

I wish there existed a substance that would 'cure' or even alleviate everyones disease. At the present there exists no such matter in the universe that we know of. I'm pretty sure, should you poll all the veterans -- say 15 years or more -- and ask what have worked for them throughout the years, the list would be short and not very diverse.

I made a decision years back that I'll never cross the line of Remicade/colectomy. I've been one of the lucky ones. Statistically I'd have been operated 23 years ago. At the present my UC is acting at its best, sans the long remissions throughout the years. Still, I've changed my line in the sand after 36 years.

At the present your daughter is receiving the best medical care the world has come up with. Should the Remicade not work for her, and I pray it will, there is always the last option people seem to live comfortable with.

Your daughter will get better in one way or another. The best advice I can think of is to follow your GI doc's orders, but never lose hope.

You do know what to do.

All the best to your daughter and the rest of the family.

P.S. I think killcolitis' post two days ago was an excellent sum up of her quest for a cure.

MustLoveDogs,

I am so sorry that you and your daugher have gone through so much pain and distress, and of course the emotional turmoil of this horrible UC.

Regarding:  But who knows if in 10 years a study will come out saying LDN causes some terrible disease in children?!?!?

 

No, I doubt that very much. LDN has been around since the mid 1908's, successfully being used in thousands of patients for so many conditions, including UC.

The reason you don't hear a whole lot about it is because doctors don't want to prescribe it  because they refuse to be open to it and think outstide the box of big pharma. I can guarantee you that if big pharma could get a patent on LDN and charge $600, $1000, $2000 per month for it, you'd find a whole slew of doctors offering it to you as another medication.

If you feel there's no other choice but to start her on Remicade, do so - and while you're doing that shop around for a doctor - an alternative doctor if you need one, to get your daughter on LDN. But please don't just repeat statements of non-truth by doctors who have a vested interest in selling you top $$ medications (because that is the reality of the situation, they make commissions on every prescription they write, the costlier the drug the more commission). It shouldn't be that way, but unfortunately it is. After all their hypocratic oath says: First do no harm. LDN does no harm, whereas Remicade yes, as you're rightly afraid can do so much harm.

Ultimately, you have to make the decision. And I understand it's a tough one. I'll keep my fingers crossed for you.

KiWi44,

The fact that it's hard to find a doctor -- out of the ~700,000 -- to prescribe the LDN for people ought to tell you something. I'm certain that if the LDN or some other 'medicine' had been found to be the med or 'cure' for UC, the gastroenterogists would have discovered it and used it. ( I know, they're slow to accept new ideas.)

Sorry, you just don't know what you're talking about. The only thing your statement tells you is that there's no money in it for them. Simple as that. NOT that it doesn't work or is just a fly by night "cure", how ridiculous! Have you done any real in-depth research? I doubt it.

 

Sometimes it is hard enough making these decisions for myself, I can't imagine making them for your child.

Yes, Remicade can be scary, but it can also offer a lot of benefit. I first went on Remicade when it was still really new (about 12 yrs ago), my parents and even doctor agonized over it. But at the time my quality of life was being determined by the disease. Remicade was the only thing that got me well enough to return to college and get my life as a 20 yr old back.

In my opinion you daughter is probably too sick to try something like LDN or alternative therapy right now. I spent 6 months on LDN and I am worse now due to a terrible flare. Part of me is glad I gave it a shot, but the other part wishes I wouldn't have held onto those 6 months waiting for something to happen and now I am no better.

No one knows what the future will hold. You can only do the best with what information you have now and what is best for you and your family now.

Thank you so much for your replies, advice and support. I was all by myself last night, up late and just thinking way too much! :)

Sometimes I just want to take a break from all this - medications, hospital bills, PREDNISONE, toilet paper, and POOP! It gets exhausting trying to figure out the correct things for my daughter to eat! She is scheduled to attend some day camps for the next 4 weeks...I hope she is strong enough to attend every day - it would be so great for HER to have a break from it all and feel like a normal kid again. The camps are outdoors...I'm hoping the heat doesn't get to be too much for her. She has just discovered coconut water and absolutely loves it, so she will be drinking lots of it while at camp...I need to go stock up :) Wish her luck that she can make it through the next 4 weeks of camp...getting her mind off of her illness is just what she needs :)

Yes! Coconut water helps with inflammation and is supposedly better than water b/c it has electrolytes. We get it at the regular grocery store...sometimes it is in the juice aisle and sometimes it is with the bottled water. Of course the flavor my daughter likes is only sold at a few stores so I am going to order a case of it on Amazon!

I just recently started drinking coconut water at the advice of my brother. He is a health food freak.

I think it is one of those things that it isn't going to greatly improve your Crohn's or UC symptoms , but is very healthy for your overall well being especially for those of us that are having D a lot and need the hydration. And when our disease is active I feel like keeping the rest of you as healthy as possible can only help matters!

From the information my brother sent me it hydrates you quicker than water and has all the 5 essential electrolytes. It is a very good source of potassium which is something I struggle with when I am not well.

I have gotten it at a few different places lately, Traders Joes definitely has the best price by far! Unless it is on sale at the grocery store or whole foods.

Just to give you alittle hope.  Remicade has been a god send for me.  I have been on it two years now and I go D about three to four times a day(depending on what I eat) and I know when I will go(after lunch, in the morning, and maybe after dinner, usually I go after lunch and then don't go until the next day, I go most in the morning).  I am still very tired but I haven't had any accidents since starting it.  I will still need to find a bathroom when I have to go but I can hold it until I find one. 

I have second thoughts about the remicade all the time.  I don't like being on it but what choices do we have.  I couldn't live like I was before the remicade.  I was horrible.  I also don't like the surgery option and my opinion is I will try all the meds available before surgery.  Just in case I have problems during surgery or complications after and it doesn't work well I will know I tried everything before going there.  I know I will need surgery because I am young and at the top of the med list but right now the remicade is working great. 

I can't imagine my own children getting this exspecially at the age your daughter has it.  I hope I am never forced to make those decisions for my kids.  Best of luck to you and I hope the remicade works.  Also, the cancer risk scares me and I get in one of my moods from time to time about it but like I said we have no choice.  Our options aren't good either way. 

The fact that it's hard to find a doctor -- out of the ~700,000 -- to prescribe the LDN for people ought to tell you something. I'm certain that if the LDN or some other 'medicine' had been found to be the med or 'cure' for UC, the gastroenterogists would have discovered it and used it.

www.lowdosenaltrexone.org/gazorpa/History.html:
Naltrexone in substantially lower doses (Low Dose Naltrexone) is showing great promise as a treatment for multiple sclerosis, Crohn’s disease, AIDS, rheumatoid arthritis, celiac disease, CFIDS, lupus, and certain forms of cancer.

Unfortunately, obtaining FDA approval for LDN will not be a straightforward process. Since naltrexone is now a generic drug, no pharmaceutical company currently holds exclusive manufacturing rights. No company is eager to fund an expensive clinical trial for a drug that will make them so little profit.

However, even without governmental approval or corporate support, LDN is gaining significant grass-roots attention among patients and doctors. The exchange of research information over the internet has greatly accelerated the recognition of the off-label use of LDN.

BabeintheWoods,

Thanks for posting this.

BabeintheWoods said...
Powdered psyllium seed is my wonder drug. Whenever I begin to see gastro symptoms I mix powdered psyllium seed, kefir, blueberries (frozen are cheaper), and VSL#3DS into a gunk that clears things up very quickly

As I said in the earlier thread about psyllium seed vs psyllium husk, blueberries have been part of my 'wonder drug' that has repeatedly nipped flares in the bud for well over a year.

She is so young.. how awful for her and for the rest of the family. I had UC for thirteen years (started at 16) before I chose to have my colon removed. I did try other methods to try and stay away from all the drugs. Have you given Raw food diet or SCD a try? She is so young she may respond very well to it. I think that I may still have my colon today if I had tried these options in the beginning of my disease. They worked for me quite well, but I could never quite get off the meds (which lowered my immune system, then I got c-diff which really messed me up). Just another option to think about. Wishing you and your daughter many blessing and healing.