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Crohn's Disease
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Posted 4/12/2012 2:22 PM (GMT 0)
It's been awhile since my last post...just to update everyone-my 16 yo daughter has had CD since age 9. She had been treated with 6mp for maintenance for 6 years. At age 13, she had a small bowel resection for 18 inches of stricture in the terminal ileum. At age 15, her liver enzymes were elevated, and 6mp was no longer effective and pediatric GI switched her to Humira (she had 2 doses of remicade 2 years earlier immediately before her resection-she ended up having an obstruction, so docs opted for surgery and stopped the remicade). In Sept. 2011, a thyroid nodule turned up positive for papillary thyroid cancer, and so, the Humira was stopped during treatment of the cancer. Fast forward to today... Currently,
my daughter is still not being treated for CD.....she is on 9mg of Entocort b/c a colonoscopy in December showed reoccurrence of CD at surgical site. Promethius tests results showed elevated markers of inflammation (3 weeks ago). My child needs maintenance meds before we have a full blown flare! My dilemma is that her pediatric GI wants to restart the Humira...I should also add that Liv had skin lesions 3 times while on Humira that resulted in cellulitis and the need for megadoses of antibiotics that didn't help the CD..she was only on Humira for 5 months, three of those months dealing with infected skin lesions. Regardless of skin issues, ped. GI insists she should restart Humira. After 4 other opinions from some highly respected gastros in the NYC area...they all have different opinions about her restarting biologics after having a carcinoma..they just do not know enough. One adult GI recommends not restarting biologics and just keeping her on steroids until she becomes symptomatic!!??? I am so overwhelmed and confused, there are serious risks either way, just not sure which way to go. Ped. Gi does not think methotrexate will hold her, and is not comfortable prescribing Cimzia b/c he has not had experience with it. With Cimzia, we still have cancer risk, but maybe she won't develop skin lesions. Afraid to restart Remicade b/c of potential for possible severe reactions...I hate making these decisions for my child...please some advice or input from others!!! Thank You!!!! (PS-I am desperate and started Liv on N-acetyl glucosamine and Curcumin b/c of the possible benefits..not 1 doc will agree to prescribe LDL either...UGH..this is tough!)
Thanks Again and sorry for the long post! Kim
Posted 4/12/2012 2:44 PM (GMT 0)
Livilou,

Woa, what a roller coaster ride it has been for you and your daughter, I am so sorry.

I would suggest to look into LDN, low dose naltrexone, and see if you can add it to her treatment. I think it would certainly benefit her: for her Crohns, and it will also help strenghten her immune system, and help with the thyroid cancer as well. So, IMO, the benefits are multi-fold.

Here's some info on LDN for you. If you're having problems finding a LDN prescribing physician, please call Skip's Pharmacy in Boca Raton, FL and they can put you in touch with one.

For those of you considering LDN, or for those of you not familiar with LDN, I wanted to share my story:

Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

 

Here's my story on LDN: I started on 4.5mg of oral LDN on 2/7/2011, and saw no change - still continuing to bleed at a 10 (on scale of 1-10, 10 being the worst).

When I spoke with the compounding pharmacist, she mentioned that I may not be absorbing the LDN properly, and suggested I switch to a transdermal LDN formula, which would be a cream applied to the bottom of the forearm. She told me a lot of her pediatric patients do much better with the Transdermal LDN, and in some patients with absorption issues it helps too.

 

 

The THIRD day after I started the transdermal LDN, my bleeding went from a 10 to a 3. FOUR days after that ( full week on LDN), my bleeding STOPPED completely, after more than 1 1/2 years of continuous bleeding. Bottom line is it works!

 

LDN - low dose naltrexone is very cheap - it costs around $25-30 a month (for pills or the transdermal cream). Gastro doctors usually don't prescribe it because they say "it isn't the standard of care". My gastro refused to prescribe it, so I found a local osteopath who did. I did ALOT of research, and the bottom line is: it works!

Once you get the script for it, you'll need to get it from a compounding pharmacy, who'll make it up for you, and ship it to you. The best compounding pharmacy in the country for LDN is Skip's Pharmacy in Boca Raton, FL. They ship all over the world - they have 20,000 patients with various conditions on LDN. That's where I get my transdermal LDN. If you contact them, they'll tell you who locally to you will prescribe it to you. You can reach them at: 800-553-7429 www.skipspharmacy.com

Please, go to www.youtube.com write: Low dose Naltrexone in the search field and you will find a pharmacist explaining where in the U.S you can buy your medicine. You can also read these pages to find more info to bring to your doctor:
www.ldninfo.org

www.lowdosenaltrexone.org
www.ldnscience.org
www.ldnresearchtrust.org


and if you want to find what other patients have experienced when used LDN, choose UC, Or cancer, or Crohns Disease at:
www.ldndatabase.com

Hope this helps. And I hope to those of you on the fence about trying LDN, give yourselves a chance...

Please let me know how it works out for you.

What do you think?

 

 

 
Posted 4/12/2012 2:54 PM (GMT 0)
I agree with InSoFla, it seems that alternatives are the way to go. I would be very uncomfortable with putting her back on a biologic.

Pediatric patients sometimes do well with complete bowel rest (TPN) - I think this approach is equal to steroids in inducing remission. I realize it's not something a 15 year old would be happy about, but it may be a reasonable choice given where she is right now.
Posted 4/12/2012 2:55 PM (GMT 0)
i had bad reactions while i was on humira recently myself. The nurse kept in contact with the drug company and continued to ask them what i should do as more side effects continued to happen. After the rashes, itchy scalp, and open sores we did stop it and i'm going back to the doc tuesday to find out what they want me to go from here. Once i talk to them i will let you know what they suggest for me. I know that after that he doesn't want me on the humira anymore. I posted a little more info on the post "First post, having humira problems, lump in stomach". Have you tried calling the drug company like the nurse did for me? It really helped.
Posted 4/12/2012 5:15 PM (GMT 0)
@ InSoFla,

I just called Skip's Pharmacy and spoke with Dr. Skip himself! He referred me to a Dr. in NYC-he is not a GI,but
he uses LDN in his practice. I am having a phone consult with the Dr. on Monday, and he will prescribe the LDN for Liv
through Skips Pharmacy. I am cautiously optimistic at this point...we are hoping for the best and obviously have nothing
to lose! I have read about Dr. Jill Smith's studies with LDN, but have not been able to find an MD who will prescribe it. I
am also thinking about contacting Dr. Jill Smith to find out about another pediatric study she is working on with LDN, as
I have 2 kids with Crohn's, my 18 year old son also failed 6MP and is now on Remicade. Thank You InSoFla!!!

Kim
Posted 4/13/2012 12:11 AM (GMT 0)
I'm so sorry for what you are going through. I don't have any other advice other than what the previous posters have offered. I just want to offer my support.

Over the years I've read many posts that have floored me. Yours ranks right up there, if not at the top. As a Parent, I know how difficult it is, but what you're dealing with is in a whole different realm. 

I can't believe that you have two children dealing with this disease. Then a cancer scare. Do the Doctors think that the thyroid cancer is linked to the medication used? 

I truly hope that you find some effective treatment options. I will certainly send prayers your way. Hopefully you'll get some other medical opinions, or perhaps find yet another GI that will have a better approach. 

 

Posted 4/13/2012 12:35 AM (GMT 0)
Livilou,

I am so glad you spoke with Dr. Skip. He is very knowledgeable and very nice.

And I'm so glad he referred you to a local prescribing doctor.

I'll keep my fingers crossed for your daughter.

Will you also be putting your son on LDN as well?

Please let us know what happens at Monday's conference call.

A big hug to you.

Posted 4/13/2012 11:15 AM (GMT 0)
Thank You InSoFla, I will keep updating! And @ 73monte, Thank You for your well wishes, it has been tough for the past 6 months. It is so difficult to watch your children suffer and to try to make these difficult decisions about their health and future. Just trying to live day by day...I cry alot but try to stay strong for them. I pray everyday for a cure or maybe some meds that are effective and safe for everyone.
Posted 4/13/2012 12:29 PM (GMT 0)
Livi,

My pleasure.

Please feel free to email me any questions, etc..., here's my email address: [email protected]

Just be aware that there are different forms of LDN, and it's important to get the right one. Generally fillers to stay away from are:

avicel, lactose, slow release, and the best one is sucrose which is the hypoallergenic one.

Also, one more caveat: some people do better on transdermal LDN (cream) because IBDers do have absorption issues (of nutrients and also drugs because of overall impaired absorption), and others do better on oral LDN.

So, I think it's important that you know  that.

Stay in touch, and let us know how things go.

 

Posted 4/13/2012 1:25 PM (GMT 0)
Thanks InSoFla! Actually Dr. Skip recommended the transdermal LDN, since Liv does have active disease and some inflammation. I hope she does well. One of our GI's just phoned with lab results and I told him about the LDN and his exact words were, "Oh, it doesn't work, but if you want to try it, go right ahead." Unreal. Kim
Posted 4/13/2012 5:46 PM (GMT 0)
Livi,
Your GI's reaction is pretty typical, unfortunately.
I can't wait for her to try the transdermal LDN.

Just wanted to make you aware that it does seem to work better, more quickly, and more effectively if you are following a diet that is close to SCD or GAPS or Paleo - essentially being dairy free, gluten free, and wheat free.
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