Alternative treatment options, how to select?

[joanne_c]

Hello Everyone,

I'm happy I decided to make the leap and join a forum, it's quite a relief! My daughter was diagnosed with CD almost 3 yrs ago, she'll be 17 in October. Her onset was fast and severe, in a 6 week timeframe she went from a healthy and athletic 14 yo to being admitted to Mass General for severe/critical crohns colitis. There have been too many hospitalizations to recall since then, but thankfully none in over a year. We've learned to live with the disease, but as you all know it's toll is neverending and touches upon all facets of life.

We're currently using the "standard of care", of Cimzia & 6mp, 10mg of pred & tapering, and lialda but her symptoms are worsening and we're investigating alternative methods of treatment.(she failed on remicade after 6-8mos, same on cimzia but we tried again with cimzia & 6mp) Her GI is supportive of LDN, FBT/FMT, not sure about Helminthic therapy. We live in NH, medical marijuana recently passed but won't be available for 2 more years.

My question to the forum, is how do we decide which method to try first? I'm comfortable with all of the alternative methods, but is treatment or availability an issue? For instance, if FBT/FMT works, where do we go for the treatment, same for helminths? I understand there are clinical trials ongoing for both, but after the clinical trial is over do participants have access to the treatment?
Has anyone attempted to correlate location/severity of Crohn's with the success or lack thereof of alternative treatments?

Thanks for any and all advice!

 

[DJW]

So sorry your daughter isn't doing well. I don't have any answers but I want to send you and her my support and best wishes for successful treatment.

 

[Kev]

Let me jump in with both big feet with my 2 cents worth (since the penny has been phased out, my advice is actually worth less than that now)... OK, seriously, for a change... Your daughter was stricken at 14... she has years ahead of her of taking pills, or swallowing worm larvae, or holistic treatment, or smoking medical marijuana... In my humble opinion, the thing to look at is... over the long term.. the big picture.. how much meds (or whatever) do you want her injesting, injecting, inhaling or swallowing. If you look at it from that point of view... then perhaps your best choice is to go with 'the' lowest dosage of treatment that will do the job. I would suggest, especially since you've a doctor who is on board with LDN, you target that as your 1st alternative. If it doesn't work within 3 months... then choose the next less invasive form of treatment. 3 years of raging U.C. can obviously do a lot of damage... but if LDN works for her, then it will progress no further. And it is as simple as taking 1 pill at bedtime, with next to zero risk of side effects... and those that do/might present on occasion are relatively tame compared to the other options. And it has a surprisingly high success rate for sufferers.

 

[joanne_c]

Thanks for your suggestions, it definitely makes sense to opt for the lowest dosage first. Your 2 cents worth is extremely meaningful to me, can't place a dollar value on it, I'm sure you know what I mean.

What other meds can you take while beginning LDN? Biologics are definitely out, but what about Lialda, Pred (up to 10mg/day is what I've read as being okay)? I'm concerned about managing a flare prior to the LDN kicking in. Do you have any advice about these?

Thanks again,
joanne

 

[Kev]

I heard (read) the same as you... that you can combine LDN with up to 10 mg pred. Other than that... I don't know. Perhaps someone on here can private message you with an e-mail address for Dr Jill Smith... or some other expert in the field. All the best.

 

[prettykitty]

For instance, if FBT/FMT works, where do we go for the treatment, same for helminths? I understand there are clinical trials ongoing for both, but after the clinical trial is over do participants have access to the treatment?

Just want to chime in on the clinical trials, as a person who works in the research field. You ask a very astute question -- one that anyone who participates in research should consider... access to the intervention after the trial.

Some studies make arrangements to make the product available --if it proves to be effective -- and others do not. This is something you definitely need to ask before you decide. You also need to make sure that you understand the research design -- particularly whether there are different intervention (including control) arms, what the various treatment conditions are, and the likelihood that your daughter will receive the experimental intervention (as opposed to a pre-defined standard of care or even placebo).

The most important thing to remember in research is that the primary objective is to learn about the product (safety, efficicacy, pharmacokinetics, etc...), not to find the best treatment for the patients participating in the trial. That is not to say that participants do not get good care, or that the research outweighs the well-being of the participant ... just that the purpose of research is to gain knowledge, and it is important to understand that MOST trials are designed such that participants' care is standardized, and participants will be treated based on a pre-defined protocol.

A good place to look for trials is clinicaltrials.gov.

Good luck!

 

[joanne_c]

Thanks for the advice! I've slowly been familiarizing myself with the clinical trials site and have found to be an excellent resource for researching the pros and cons of new treatments.

I've begun taking notes (in layman's terms) on how treatments interact with the body. It helps me to understand (which is key for me, it removes fear) how the treatment should work, promotes questions for me to present to my daughter's GI and spurs me on to delve deeper. Do you know of any resources such as this that I can use?

 

[Jmrogers4]

You can continue with 6MP with LDN. Hopefully that would be enough to keep things under control to give the LDN a chance to work.

 

[joanne_c]

Thanks for letting me know that 6mp is okay to use while on LDN. We're still trying to decide which alt method to try first, but LDN is a front runner.