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LDN folks- Pred at the same time?

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Posted 4/19/2011 6:11 PM (GMT 0)
All-

Just got my scrip for LDN, going to give it a shot before moving on to Remicade or 6mp. Currently on 20mg Pred, going to try and taper down to 10 before starting the LDN (read on one of the LDN sites that the 10mg level is good enough so that it doesn't suppress the immune system enough to counteract the immune-boosting of the LDN). Doc who gave me the scrip agreed, wanted to see how everyone else fared and what levels of Pred they might have been on...

Thanks!
Posted 4/19/2011 7:39 PM (GMT 0)
texasmax,

Great that you got script for the LDN. Which doctor gave it to you? Your GI or an alternative doctor? Also what kind of LDN is it for - oral( regular or  hypoallergenic?) or transdermal? dosage?

I've read of accounts of others starting on LDN with prednisone use - 10mg yes, and then when they do well, they taper off completely.

Let us know your progress.


 

Posted 4/19/2011 8:04 PM (GMT 0)
Found a local DO from the Yahoo LDN boards... My GI wasn't familiar with it and, while usually very supportive in my decisions, didn't know the research and didn't sound enthusiastic about doing so- never brought in the hard copy studies for him- just went out for "a second opinion" from an osteopath who's given it in the past (though only for MS and arthritis).

The prescription is just for 4mg "powder". So seems like I've got some leeway from wherever I go for compounding (probably Skip's in Florida unless I find one locally I trust on the fillers).

Did you try the pills first before trying transdermal, or did you start on the transdermal?

And, what's with the regular vs. hypoallergenic?
Posted 4/20/2011 9:32 AM (GMT 0)
texamax,

LDN as powder in 4mg? Ok, I would suggest you call Skip's and ask them how to use it.

Here's my experience with LDN (from another post):

I wanted to share with everyone that Transdermal LDN has put me into remission.

I am doing very well now on the Transdermal LDN, I'm going on my third week now. The bleeding which used to be at a 10 is now at a ZERO, and for the first time, am having normally formed BM (sorry about the details, here :()

I'm sorry I lost 5 weeks on the oral LDN. I found out the hard way, that my body couldn't absorb it. And if you think about it, it makes so much sense - people with UC and Crohns are going to have absorption issues in general since their gut isn't functioning properly.

How long did it take to start seeing a difference? On the transdermal LDN, after the 4th day, I noticed the bleeding was much, much less - from a 10 down to a 3.

I've also noticed that whereas before if I ate anything other than protein, it would increase the bleeding, but since the transdermal LDN, I've cheated a few times, and NO increase in bleeding, no intestinal distress!! Overall, I am very happy with my progress on LDN, and will give it a full 6 months to complete its "immune boosting action", as the compounding pharmacist told me. And even when I am in full remission, as I fully expect to be in 6 months, I don't think I will ever get off the transdermal LDN since they are no side effects, and it boosts your immune system, is cheap, so I don't see the harm in continuing to take it. I am however, hoping that the LDN will also help with the terrible Reactive Arthritis that came with my UC, and that apparently may take about 6 months.

Overall, I  would highly recommend to any UC and Crohns patients to do their research and due diligence on LDN, and go for it. But I would suggest, based on my own trial and errors, that they do Transdermal LDN right away. It bypasses the gut, and get absorbed into the blood stream right away.

As to the difference between regular oral LDN and hypo-allergenic kind, I found I was allergic to the avicel filler in the regular kind (gave me headaches and diarrhea, so I finally went on hypoallergenic kind. BUT I couldn't absorb it, so it wasn't making a difference.

I started on 4.5mg of oral LDN on 2/7/2011, and saw no change - still continuing to bleed at a 10.

When I spoke with the compounding pharmacist, she mentioned that I may not be absorping 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 alot of her pediatric patients do much better with the Transdermal LDN, and in some patients with absorption issues it helps too.

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 let you know about a local doctor (to your area)  who 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 Crohns and UC  patients  have experienced when using LDN, choose Crohns Disease and Ulcerataive Colitis at:
www.ldndatabase.com

Hope this helps.

I would love to hear from others of you who have tried LDN, thinking about trying LDN.

:)

BTW, as far as compounding in into a cream, it is very imporant for the pharmacist to use a special formula, with a percentage of emu oil - for greater absorbability. That's why it's so important to have it done by an experienced pharmacy with LDN transdermal.

Please, let me know how you do.



 

Posted 4/25/2011 6:04 PM (GMT 0)
Texasmax where in Texas are you located??? I'm in the Houston area looking to try LDN.
Posted 4/25/2011 7:29 PM (GMT 0)
North Dallas.

I'll send you a PM with a doctor in the Houston area that I got from a master list kept by someone on the Yahoo LDN boards.
Posted 4/25/2011 7:34 PM (GMT 0)
TxGirl- what's your email? Don't think we can PM on theses boards...
Posted 4/25/2011 10:14 PM (GMT 0)
Good luck! Good thread... I am interested in trying LDN myself (my alternative MD is fine with it) but am currently on 3.75 mg pred as well as on weekly Humira. I know that some literature says you need to be off anything that is immune suppressing, but I also keep seeing reports on forums, such as this thread, where people start it while still dependent on such drugs... so I would love to get to the bottom of that and know if its ok to start while on pred and/or Humira.
Posted 4/25/2011 11:47 PM (GMT 0)
Probiotic,

It is ok to start LDN, from all I've read, with decreasing doses of Prednisone ( 30mg and down), but not with Humira (as that is a more seriously immune suppressant drug).

Don't forget to get the Transdermal cream LDN, that's the best and fastest acting one.

If you need more info, just ask.

Posted 4/26/2011 1:29 AM (GMT 0)

InSoFla said...
Probiotic,
It is ok to start LDN, from all I've read, with decreasing doses of Prednisone ( 30mg and down), but not with Humira (as that is a more seriously immune suppressant drug).

Don't forget to get the Transdermal cream LDN, that's the best and fastest acting one.

If you need more info, just ask.

thanks.. sounds like for now LDN is not an option for me , then, at the moment. I badly want to get off biologics for good, but since I am allergic to all the 5ASA drugs, And since biolgics tend to be ineffective if you stop them and then restart them later if you flare, I am afraid to stop until I find something else which works. I had hoped that worm therapy or fecal bacetriotherapy HPI would help me but neither worked in my case. i may be having success again with simple supplements- lately taking a lotof turmeric and massive doses of glutamine on top of the hefty amounta of probiotics that I always take, and this coincides with my best semi-remission in ages... but for now I dare not stop Humira unless I know I have another heavy hitter that works.
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