Presenting LDN to my doctor

[jgo123]

I have a question for those on LDN.

I am very intrigued by its possibilities and the success stories of those using it. I was diagnosed with Crohn's in January-11, went up the ladder of medicines with no success, have been on Humira since Sept-11, and had my first bowel resection in April of this year due to active Crohn's and significant scarring. Things were great the first two months after surgery, I had never felt that great even a week after being released from the hospital. Then sporadically symptoms would come back, and now have been having constant pain again since October that is only progressing in severity. My doctor suggested putting me back on prednisone after getting the results of tomorrows CT scan, but I see it as just another stop gap and won't actually help the problem so I am very against it. I want to present LDN to her, but I am not sure if she will see it as a realistic option.

I was wondering from those who were on it- how did you go about presenting it to your doctor and how many options did you exhaust before they gave it to you? Did you try everything? Did you have to ask numerous doctors numerous times? Is it even realistic to expect a doctor to prescribe it? I am wondering if she says no, I should see another practice for another opinion. Any help would be GREATLY appreciated, I don't know where else to go or what to do at this point since it's so soon after surgery. Thanks!

 

[ctrl z]

Hello!

I mentioned it to my doctor and she looked up the study on pubmed. She didn't take it seriously so I called a local compounding pharmacy and asked what doctors in the area are prescribing LDN. I was given the names of two DO's in neighboring towns and made appointments with both just in case. I ended up getting the Rx from the first doctor.

Since you've been through all of those things with your disease, perhaps your doctor will be more willing to take a chance with LDN. Maybe my doctor would have been more open to it if I had tried biologics or other drugs with poor results.

I suggest that you print out this study and take it to your doctor. If your doctor seems hesitant or refuses, maybe you could come to some sort of a compromise. Maybe say that you will go on a short course of steroids to knock out the inflammation you have left over as long as he/she prescribes the LDN? I know you said you don't want to deal with steroids again but it might get your GI on board with LDN. If not, calling local compounding pharmacy would be a the next step. It's what worked for me.

Welcome to the forum! I hope you stick around and keep us updated on how you are doing :smile:

 

[jgo123]

Thanks so much! The study is particularly helpful, I was trying to find literature to send her.

How would I find a local compounding pharmacy, google?

How long have you been on it? I was wondering what effects/improvements you saw with the pain aspect of Crohn's. I don't have a lot of the typical symptoms, for instance there are no bathroom problems. But my symptoms are a lot of pain, nausea, weightloss, fevers and fatigue. I wanted to know if LDN helps stop the pain, which I think is what is affecting me the most, or does it just stop the progression of the disease from getting worse? Could you share your experience? Thanks!

 

[ctrl z]

You're welcome! :biggrin:

Yeah... I just Googled it.

I've been taking LDN since October 6th. I never had much pain to begin with but I did have slight discomfort. The discomfort went away for me but I don't know how it is for people who start LDN that have a lot of pain.

The Pentasa that I take gives me nausea. I haven't noticed any nausea since starting LDN and I actually have energy now. I would have to mentally and physically prepare for days before doing an activity because this disease just made me feel so run down but now I don't struggle with that at all.

 

[xmdmom]

I wouldn't use any compounding pharmacy. They are not well regulated. Skips pharmacy in Florida is well versed in LDN and ships prescriptions to other states. The LDN website has a list of other reliable compounding pharmacies.

 

[ctrl z]

I agree with xmdmom about the compounding pharmacies but for the purpose of just finding out who in the area is prescribing LDN, I had luck calling local compounding pharmacies.

Personally, I use Skip's pharmacy in Florida.

HERE is the list of reliable LDN compounders for when you are ready to have your Rx filled.

 

[Kev]

How it would affect the pain depends on what is causing the pain. If it is attributable to just Crohns, it should respond well if the LDN works for you. However, on the other hand, if the pain is from accumulated scar tissue... like mine... nothing will make that go away until/unless the scar tissue is removed. Mine is too widespread to be surgically removed.

 

[Jmrogers4]

My son presented a lot like you pain, nausea, weightloss, fevers and fatigue. I can tell you we have not had pain since shortly after starting LDN. It will be 6 months Jan. 1. He did have a flare about 2 weeks after starting LDN and if we could go back I would not have stopped the Imuran with his first dose of LDN and the GI agrees. I can't help you on getting LDN but Ctrl Z has some great suggestions. My son's doctor was the one to suggest it, as the Imuran wasn't doing a 100% job and I really did not want to go to the biologics if there was another option. Lucky for us he had read about the trials and research. I think he is still a little skeptical but was very impressed with Jack's progress at our checkup in Oct. We are due to have a scope June/July and if it shows what I think/hope it will, maybe he will prescribe it to others.

 

[jgo123]

Thanks for all the great responses! I just saw my doctor this morning and after reviewing my bloodwork and CT scan results she said everything looks great, and is going to do a scope next month. I asked if this was just what the rest of my life was supposed to feel like and she said no, so we will see if the scope shows something. I showed her the LDN study and she said after the scope she would give me the info of a doctor at Hopkins who works with it.

They removed all my scar tissue (which I think was my main problem) with the surgery in April. So would I be correct in thinking that if my scope shows a little bit of Crohns is back, and that's whats giving me problems, that LDN would stop it from progressing any further? So maybe since it is so soon after the surgery this would be the best time to start it before it gets any worse?

CTRL-Z, I am on Pentasa too, were you able to stop taking it once you started LDN? Would I also be able to get off of Humira too? So LDN replaces all other medicines?

 

[ctrl z]

jgo123,

That's great your doctor knows another doctor that works with LDN! I hope you can get in to see this doctor soon.

That's correct, if the LDN works for you, it will stop the progression of your disease. It could take anywhere from 3 to 6 months for the LDN to start helping with your Crohn's but along the way, you may notice some side-benefits. The first thing I noticed was that I had energy that I haven't had in many years. It also lifted my depression.

You're right about starting now... it would be a great time to start.

I've only been taking LDN since October and I'm still taking my Pentasa. I want to have been on LDN at least 6 months before I start to try to get off the Pentasa--just to be on the safe side.

I wouldn't say that LDN will replace all other medicines but it is definitely complimentary to a lot of medicines--NOT complimentary to immunosuppresants. The general consensus is that LDN and immunosuppresants work against each other.

The doctor at Hopkins should be able to get you on the right track :smile: