LDN speed bump

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njmom
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Date Joined Apr 2006
Total Posts : 1884
   Posted 5/22/2010 4:30 PM (GMT -7)   
LDN might not be doing the job any longer. My daughter came off Entocort in the fall, and managed to do so without flaring, but her CRP has been steadily rising - from a low of .7 in September, when she was on LDN and one pill of Entocort, to the latest lab test result of 2.45.
 
Further, her hemoglobin dropped to 12 (the new definition of deficiency for females is below 12.2) despite normal ferritin. And her TSAT is below normal. The normal is 20 or more, and she is at 15. What does this mean? Low TSAT combined with normal ferritin tends to point to inflammation. And the drop in hemoglobin from higher than 13 to only 12 further confirms potential inflammation and ID (iron deficiency). 
 
LDN originally pushed the sed rate down to 2, but now the sed rate, though still low, is rising. Sed rate tends to react slower to IBD inflammation than CRP, so is not a reliable indicator of active inflammation.
 
Finally, the vitamin D 1,25 is higher than normal, even though her vitamin D hydroxy is normal and her parathyroid (PTH) is also normal. Dr. Abreu has found that vitamin D 1, 25 tends to be higher than normal in Crohn's patients - my guess is this is yet another indicator of inflammation.
 
We are glad she has managed to stay off Entocort for many months without flaring, but the signs are not good. She has no symptoms, but we have already found out, the hard way, that her inflammation tends to be silent.
 
I hate to say it, but it looks like LDN might be running out of steam.
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past three years. March '09 colonoscopy showed stricture gone but two spots of inflammation in TI. Used LDN to taper off Entocort last fall. (Was on Entocort since April 06.) Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 5000IU vit D3, 1000 mg calcium, 27-54 mg iron, monthly B12 shots, daily oral B12 1000, 10mg zinc. SCD diet modified years ago to include potatoes and rice. 


Rider Fan
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Date Joined May 2008
Total Posts : 1445
   Posted 5/22/2010 5:28 PM (GMT -7)   
That's too bad....at least you're realizing it before she's in a full flare though. What does her GI recommend from here?
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Reduced gluten and dairy.


Go Saskatchewan Roughriders!


njmom
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Date Joined Apr 2006
Total Posts : 1884
   Posted 5/22/2010 6:04 PM (GMT -7)   
Thanks...she will probably be talking with Dr. Galland (not a GI) on Monday. Options on the table, so far, could be any of the following or a mix of:
 
- try pure SCD diet and LDN
- try confirming lab results with colonoscopy (or do colonoscopy anyway to check disease progress)    
- try LDN AND one pill Entocort (sounds weird but remember, her CRP WAS down to .7 when she combined them)
- try pure SCD with no med (unlikely)
- try limiting iron supplementation - she doubled her iron intake, from 25 - 50 mg daily, not long after going off Entocort
- ditch LDN and go on low dose Entocort
- try Pentasa again despite iffy results the first time
- try Mastic gum
- try antiyeast diet
-whipworm therapy
 
She's a long way from developing a flare - in the past, there were always symptoms long before flaring. The LDN has definitely helped her overall immune system - she never gets sick anymore. I suppose it is possible the scope might be clean despite the lab markers, but tend to believe, instead, that it will show inflammation in the TI. Of course, I could be wrong, as the docs and I and she all thought the stricture was permanent - until it surprised us by vanishing.
 
I think she might be inclined to try pure SCD with the LDN. 

EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 5/22/2010 7:32 PM (GMT -7)   
njmom, what dose of LDN is she taking? Only curious because it seems from what little I've read that some people have success "tweaking" their dosage. I've read that on the LDN forum and I think from BeeSting here.... just curious... Here's hoping this is just a little speed bump and things will return to where they were!!!
Mom to 18 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too. Med-free.

Threads discussing diet:
http://www.healingwell.com/community/default.aspx?f=17&m=984588
http://www.healingwell.com/community/default.aspx?f=17&m=1533705
http://www.healingwell.com/community/default.aspx?f=17&p=1&m=1262312


njmom
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Date Joined Apr 2006
Total Posts : 1884
   Posted 5/22/2010 7:42 PM (GMT -7)   
Thanks, EMom. She's on 4.5 mg. Her CRP has been steadily climbing since she went off Entocort. On each lab test, it was just a little higher than before. I thought the LDN was not supposed to be above the 4.5 mg dose? 

spookyh
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Date Joined Oct 2008
Total Posts : 1342
   Posted 5/22/2010 10:31 PM (GMT -7)   
njmom, is she taking ALA (Alpha Lipoic Acid)? Apparantly, they've found that it helps the LDN work better.
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


njmom
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Date Joined Apr 2006
Total Posts : 1884
   Posted 5/23/2010 5:02 AM (GMT -7)   
Thanks for the tip about ALA - will check it out.  
 
*Later, after checking it out: I see no evidence for use of ALA in Crohn's, so am taking a pass on ALA. No supplement is entirely benign - ALA is a metal chelator, which means it can exacerbate the iron deficiency. Also, saw a post elsewhere saying it can contribute to yeast overgrowth.  If you can supply a link showing at least one testimonial or clinical trial result for ALA and Crohn's, I'd appreciate it. (The testimonials, etc, for LDN + ALA and cancer don't count.) 

Post Edited (njmom) : 5/23/2010 7:40:00 AM (GMT-6)


spookyh
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Date Joined Oct 2008
Total Posts : 1342
   Posted 5/23/2010 1:33 PM (GMT -7)   
Scroll down, and you'll see it mentioned that Dr. Burkson treats his patients with a combo of LDN and ALA: http://articles.mercola.com/sites/articles/archive/2009/05/16/This-Antioxidant-Can-Smash-Insulin-Resistance-and-Autoimmune-Disease.aspx

Go to one of the LDN yahoo groups (like http://health.groups.yahoo.com/group/lowdosenaltrexone/ ) to ask for testimonials. There are many people there who take ALA with LDN that should be able to help.

I haven't started ALA myself. It's something I'll consider in the future though.
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


riesasmom
Regular Member


Date Joined Dec 2009
Total Posts : 44
   Posted 5/23/2010 2:07 PM (GMT -7)   

Hi there,

I wouldn't worry just yet. Those inflammation levels are still very low. I was told they can vary from month to month for many reasons-even sore muscles from excersise. My daughter never had inflammation levels that low even when in remission. Keep an eye on things, but I don't think those fluctuations mean much at this point.


BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 5/24/2010 1:03 AM (GMT -7)   
Hi,
some suggestions:

1. Use LDN and DLPA and / or ALA.
2. Use LDN and from 10 mg and down prednisone or entocort (2.5 mg), and taper when the flare has totally calmed down.
3. Use an increased dose of LDN (I used 6.0 mg) - to stop a flare, and I could reduce the dose when I felt ok again. You could try to combine this dose with entocort/ALA/DLPA.

I did no. 3) some months ago, and after using 6.0 mg for 2 months I now use 4.5 mg again and have never felt better. I am not afraid of trying this again. I just increased the dose, did not use 10 mg (or less) prednisone combined with LDN as I've done before.
You could also consider cutting all the starches for a while to stop a flare.

ALA - alpha lipoic acids is a natural amino acid, a really strong antioxidant, as is DLPA, and this last is extending the benefits from the endorphins. Remember that LDN is working only 18 hours / 1 capsule.

here's something I googled on DLPA, found on iherb.
Dietary Supplement
DL-Phenylalanine
Supports an alert State
DL-Phenylalanine or DLPA, is a 50/50 mixture of the D- and L- forms of the amino acid phenylalanine (phenylalanine is one of the few aminos that can be utilized in its D- form). Researchers believe that D-phenylalanine (DPA) inhibits the action of an enzyme that breaks down endorphins and enkephalins. These are proteins which bind to opiate receptor sites in the brain, thereby influencing the perception of minor discomfort associated with normal physiological processes. By obstructing the action of this enzyme, DPA may extend the life of endorphins and enkephalins and their positive influence on comfort levels. L-Phenylalanine is the precursor to two neurotransmitters that help support an alert state. / Bee

Post Edited (BeeSting) : 5/24/2010 2:07:59 AM (GMT-6)


EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 5/24/2010 6:30 AM (GMT -7)   
Thanks, BeeSting! I was hoping you would chime in after I mentioned the increased dose! I hoped I hadn't dreamed that!!! LOL! Also, are you aware if other people--like on the yahoo forum--who have also had success doing this? It's been a long while since I've hung out there, but I thought I remembered reading that.

Interesting information on DLPA that you found. "Supports an alert state." Wow, I could use some of that!!! (So could the state that I live in which has been spending money that it doesn't have! But oops, I digress and have gone political...turn)

njmom, best wishes to you in figuring this out. It's like a HUGE mystery and YOU (and your docs) are in charge of putting all the pieces together.... My prayers are with you and your daughter! Also with your doctors, that they might be able to help MANY more CD sufferers with all that they are learning whilst treating your daughter!

BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 5/24/2010 1:33 PM (GMT -7)   
On Blog Talk Radio a woman named Mary Boyle Bradley is interviewing some of the staff that is within trials on researching LDN, even the doctors that are in this Pennsylvania Studie due to Crohns vs. LDN phase II that had a closure the 5th of May 2010. She has also interviewed user of LDN and some of the doctors prescribing it, and their experience, she's also interviewed a Phd. Dr. in Pharmacy, and so on. Mary Boyle B has written a book about her husband that has MS, and his benefit from LDN, I think the book is called: Up the Creek with one Paddle. (amazon.com), Mary Boyle is living in the US, her brother though is in the UK, and he is a doctor there and is one of all the working active to spreading the word ab LDN.

The reason why I mention this is that when listening to the interviews lead by Mary Boyle Bradley, one of the researchers participating in the Penn State Crohns research told us listeners that LDN could be taken in smaller and bigger doses than 4.5 mg. But he didn't believe in doses bigger than 10.0 mg. They have found that some patients are reacting well on doses at only 1.5 - 2.0 mg, the medium is often 3.0-4.5 mg and a few need more.

Personally I felt the best when I, after 3 years of using LDN, increased my dose from 4.5 mg to 6.0 mg. After using that dose for 2 months I decreased the dose back to 4.5 mg and I am still two months after this experimenting feeling better than ever. I have NO Crohns symptoms at all.
When that is said, I am a believer in vitamin D and omega 3 as inflammatory reducers. I have never used any other Crohns medication than prednisone, at most for 3 months more than 3 years ago, and now and then during the last 3 years with LDN when I felt a flare was building up. Small doses of prednisone, from 10 mg and slowly tapering have stopped all flares together with LDN.

When this is said, I am not allowed to use any Crohns medication, because I have a kidney cancer diagnose, I have had a surgery where they did a partial nefrectomy, (took away a part of the kidney), and I am cancer free by now, but my GI doc will not allow me to use remicade, humira or imuran due to the risk of getting a suppressed immune system and therefor an increased risk of activating the cancer again.

Those interested in learning more about LDN, go to youtube and search for low dose naltrexone. You will find videos made of LDN users and doctors / pharmacists doing great information.

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 5/24/2010 3:48 PM (GMT -7)   
Great feedback, everyone, thanks! She decided to go with LDN + strict SCD (which means no more rice or potatos). 
 
Spooky, I had already checked that Mercola link and videos, but was disappointed to find no talk about LDN+ALA combo and Crohn's. Dr. Burkson might use LDN+ALA, but not for Crohn's. 
 
reisasmom - I realize you don't want me to worry, and appreciate the kindness, but like EMom so aptly said, this is indeed a puzzle we are trying to figure out in order to take the right actions. CRP levels not fluctuating, but steadily rising (multiple lab tests in a row) and higher than they have ever been, before -- she never had higher than a 2 (and that, only once or twice) - unless she was ill with a virus or bacterial infection. Before she developed Crohn's, her CRP was .6. So a CRP of 2.45 is not normal for her. By itself,  might not mean much BUT the vitamin D 1,25 is, for the first time, above normal and some docs think high vitamin D 1,25 indicates inflammation. Also, her ferritin is normal but her hemoglobin (which is usually fine in the presence of normal ferritin) is low and so is her TSAT, which also indicates inflammation. So if we triangulate the data --CRP/HGB/D 1,25-- something is going on. Even docs use the word "remission" loosely - when, in fact, a patient still has microinflammatory activity. The following abstract questions whether Crohn's patients said to be in clinical remission (for instance, per a low CDAI score) are really in remission if their CRP is elevated above normal.  I'd love to look away, but the data tells the story--at least at the microinflammatory level. By the time symptoms show, yet another stricture might have been created...and this time, it might turn into scar tissue rather than go away. Our goal is to bring Crohn's to a dead stop, meaning we are looking for normal biochemical markers confirmed by a colonoscopy...back to the drawing board;)  With her propensity toward stricturing in the TI, the chief danger is the need for surgery. See link to abstract below, questioning CRP and remission:  
 

http://www.ecco-jccjournal.org/article/S1873-9946(08)00063-9/abstract"It is not clear whether Crohn's disease patients in clinical remission (Crohn's disease activity index<150) display normal concentrations of inflammation sensitive biomarkers. Our goal in this work was to explore the intensity of the microinflammatory response in a group of Crohn's disease patients in clinical remission...Crohn's disease patients in clinical remission displayed a statistically significant (p<0.001) elevated concentration of hs-CRP (4.83±3.8 mg/l) compared to controls (1.05±2.9 mg/l). All other bio-markers were also significantly higher in Crohn's disease patients in remission compared to controls. Similar results were obtained in a subgroup of Crohn's disease patients with very low disease activity — CDAI<75...Clinical remission is not equivalent to biochemical remission raising a question concerning the true definition of remission in Crohn's disease."

Beesting, I love how you lay out the options! Option 1 - see answer to Spookyhurst. Option 2 - this is not a flare, and if she does flare on LDN, we will kiss it goodbye - because a flare means Crohn's has been festering, all along. Option 3 - she is meeting with the doc on Wed, and will ask him what he thinks about this but this is not a flare  -- instead, is a steady deterioration of biochemical markers. LDN suppressed the sed rate but it never, by itself, suppressed CRP, which has steadily risen since she went off Entocort so a one-time uptick in LDN will not fix what has been a consistent problem. Your suggestion about the starches seems to be the safest option. And we have been wondering if it makes sense to give strict SCD another try. So she started strict SCD yesterday and in 4 weeks will do another blood draw...to see whether things are getting better or worse. I read Boyle's book but was disappointed it was all about MS - didn't learn anything new. However, the video you mentioned about LDN dosage sounds fascinating.

Wish I'd gone to DDW myself, since I can't seem to get the details about Smith's findings. Paid $30 to download them from the DDW website but received an email saying I'll get them when they are ready.

Hope everybody understands that vitamin D 1,25 is NOT the vitamin D we talk about when we suggest vitamin D supplementation. The supplementation is intended to raise the other vitamin D, vitamin D 25 hydroxy.  

She has also lost a lot of weight since starting LDN and can't seem to get it back on. Has been underweight since getting off Entocort in September.

Post Edited (njmom) : 5/24/2010 4:51:44 PM (GMT-6)

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