Re: New to the Group - Our Crohn's Story... and LDN Related

[Guest guest]

Hi,

I am sorry for all your daughter is going through. I have not seen any posts from you lately and was wondering how she was doing - hopefully better.

Debbie in Chicago

In a message dated 1/26/2011 12:25:20 A.M. Central Standard Time, low dose naltrexone writes:

New to the Group - Our Crohn's Story... and LDN Related Questions

Posted by: "rbrunner78209" rbrunner88@... rbrunner78209

Tue Jan 25, 2011 12:41 pm (PST)

My (27 yr. old) daughter was diagnosed last year with Crohn's through acolonoscopy. For about 3 years prior to that, after going to severaldifferent doctors, we had not been able to pinpoint the problem. According to the current doctor, the affected area is the terminalIleum. The diagnosing doctor was amazed at the amount of inflammationand thought that a blockage was eminent. Lucklily, we have avoidedthat.... so far. They started her on 6MP (50 mg. - 1 daily) and Asacol(400 mg. 2 /day) and that has worked well for her for the past 9 monthsor so. Recently, about 10 days ago, she suffered a flare-up and it stillhas not subsided. She is vomiting several times a day and has pain inher stomach area.... as well as cramping and boating down low where theinflammation was found. Not sure what the stomach pain is all about,but this flare-up has lasted longer than any of her previous ones. Sheis afraid to eat anything because she is having a hard time keepinganything down. Basically, she feels rotten right now.We had an appointment today with her GI (actually the Physician'sAssistant because we couldn't see the real doctor for some time out),the same one who diagnosed her in the first place. I asked if I couldtag along, and was given the OK. I wanted to be prepared and wanted tobe able to ask intelligent questions (as much as possible), so Ireviewed all of the research on Crohn's that I had from the past andthen started looking for more, new information. That's when I cameacross Jill 's Penn State study on the efficacy of LDN on herCrohn's patients. I was amazed. That sparked me to do more research onLDN and that led me to this group.We all pretty much agreed today at the doctor's office today that goalnumber one was to get her flare-up under control. We plan to do thatwith a regimen of Prednisone. My daughter doesn't like the idea (she'sworried about side-effects), but I managed to convinced her that we needto take this step before we do anything else. We will start that today.The GIs are pushing her strongly towards Remicade infusion. Since sheworks in a hospital (she is a childlife specialist), I am veryapprehensive about lowering her immune system any farther (than the 6MPalready may have), since she is often around infectious diseases likeTB, Hep., etc. Once I voiced my concerns, the PA seemed to want tocompromise on Humira (I'm not sold).I then asked about LDN. Heck, the PA had never even HEARD of Low DoseNaltrexone and looked at me like I was a crackpot. I asked that if Iwere to send a link the Penn State Study, and to a few other crediblesites I had identified that dealt with LDN as a treatment option forCrohn's, if she and hopefully her boss would take the time to read it.She told me that she would. I told her that it was my opinion, thatthey owed such time and effort, not just to my daughter, but to ALL oftheir patients.However, I already see the handwriting on the wall. There is no way inH%(( that they are going to prescribe LDN for her (I hope I am wrongabout that). They would rather her (together with her insurancecompany) fork out $10K to $15K per infusion for the Remicade. And somepeople still don't believe that we have a serious problem with ourhealth system in this country?Well, politics and big business aside.... here are my questions, ifanyone cares to offer any advice or suggestions:* Any thoughts on staying on the 6MP and Asacol while we add thePrednisone - even though the effectiveness of the 6MP and Asacol seemsto have run their respective courses?* Does anyone have any positive or negative experiences with eitherthe 6MP or the Asacol, in combination with Prednisone?* Assuming (as I expect) the doctor refuses to give her a script forthe LDN, where do we turn then? We definitely want to give LDN a try.* Would there be any reason NOT to give the LDN a try while still onthe Prednisone? 6MP? Asacol?* Any thoughts on the Humira.... in conjunction, or not, with the LDN?Thanks for indulging me and letting me tell our story. I know thateveryone out there has their own bag of rocks to carry, but maybe we canall pitch in together and do as much as possible for each other to helpus all get across the finish line without busting guts.

[Guest guest]

I want to thank all those who have offered support and advice regarding my Daughter's recent Crohn's flare. This group is an awesome resource.

 

Update:  She was so miserable and couldn't keep anything down, so we HAD to start the Prednisone regimen on Thursday.  Started out on 40 Mg. and the results were almost immediate.  She feels a TON better and is now able to keep food down.  I would have preferred to start the LDN, but the detours are daunting and we simply had to do something.  As soon as she is weened off of the Pred., by hook or crook we are going to start the LDN.

 

In addition to the GI who is pushing the Remicade and Humira, I have talked to one other GI closer to me (my Daughter does not live in the same town).  I have also talked to our family (GP).  I continue to be frustrated but we have some time now, since it will take a while to run the Pred. regimen.  None of the three doctors have said 'no' to my request for scripts, but none have indicated that they would be willing to either. I have one other Dr. in mind to talk to who is a friend of mine. He was diagnosed with MS about 8 years ago, so I can't wait to talk to him.  I plan to this week.

 

I did find a compounding pharmacy in my neighborhood and I dropped in last week and asked the owner about LDN.  He was VERY friendly and told me that he knew about it and had experience compounding LDN.  He even pulled up the name of the doctors who had prescribed it.  We went through them one by one (probably 5 in all).  Only one was local and the others were out-of-towners.  The local Dr. was a Neurologist and is prescribing LDN for an MS patient.  The pharmacist is the one who suggested that I go to my GP and see if he would help.

 

Even with Dr. 's Penn State studies and the FDA's certification of LDN as an orphan drug for the treatment of pediatric Crohn's, it seems that finding a Dr. who thinks out of the box and is willing to write an off-label script is a pretty tall order.  It's pretty hard to understand why these doctors are so reluctant. The evidence of efficacy is overwhelming and there is no evidence of adverse side effects...  like some of the other meds that they prescribe on a regular basis.

 

I'm not giving up.  We're going to get there one way or another. 

 

Thanks again for all of the advice and information.  I'll post updates as things progress.