Update, and starting LDN soon

[Zizzle]

Hi everyone,
Just popping in with an update. I went to see a local dermatologist who is affiliated with a local university Myositis Center. She did a detailed exam and confirmed I most definitely have the disease, despite no muscle involvement. She said I have EVERY possible skin manifestation of DM -- she found rash in areas I didn't even know I had. She said although I seem stable/smoldering for now, she predicts I will "flare like crazy by summer" with extra sun exposure. She agreed with my rheumatologist, that I need add a new immunosuppressant in order to taper off of prednisone, or risk having a dangerous yo-yo cycle of prednisone. My choices are apparently methotrexate and/or Cellcept, even though IVIG infusions ($$$) are most effective for the rash.

Well, I'm not willing to be on 2 forms of reliable birth control to accept those meds, so I'd need my tubes tied first. Then there's the whole lymphoma risk, given my past EBV. Then there's the hairloss and flu symptoms with methotrexate. Then most people I know on meth get shingles and other opportunistic infections. I'm just not ready...

So I've been reading a lot about LDN - Low Dose Naltrexone. I know several people with DM who got relief with it, and much quicker than the 3-6 months required on meth or Cellcept (if they even help). So I called my long-lost Integrative Medicine doc, found out he does prescribe it, and made an appt for Feb 12. I can't wait!!

LDN has very few side effects, mostly disturbed sleep and vivid dreams, so I will start off on a very low dose.

LDN was recently proven effective in treating Crohn's disease too!

http://download.abstractcentral.com/DDW ... w/646.html

Naltrexone Therapy Improves Activity and Promotes Mucosal Healing in Active Crohn's Disease: a Placebo-Controlled Trial

Jill P. Smith1, Sandra I. Bingaman1, Francesca Ruggiero2, David T. Mauger3, Aparna Mukherjee1, Christopher O. McGovern1, Ian S. Zagon4
1. GI and Hepatology, Medicine, Pennsylvania State University, Hershey, PA, United States, 2. Pathology, Pennsylvania State University, Hershey, PA, United States, 3. Public Health Sciences, Pennsylvania State University, Hershey, PA, United States, 4. Neural & Behavioral Sciences, Pennsylvania State University, Hershey, PA, United States

Background: Accumulating evidence supports a role for endogenous opioid peptides in the development or perpetuation of inflammation. It is hypothesized that the endogenous opioid system plays a role in inflammatory bowel disease, and disruption of the opioid-opioid receptor interaction will reverse inflammation and promote mucosal healing. Methods: A randomized placebo-controlled double blinded study was designed to test the efficacy and safety of an opioid antagonist, naltrexone, in adults with active Crohn’s disease. Patients with confirmed Crohn’s disease and a Crohn’s Disease Activity Index score (CDAI) of at least 220 were randomized to naltrexone (4.5 mg daily) or placebo by mouth daily for 12-weeks. Subsequently, those who had received placebo were treated with naltrexone and those randomized to naltrexone continued on naltrexone for an additional 12 weeks to assess safety and maintenance of response for extended duration. Colonoscopies with biopsies were performed at baseline, weeks-12, and 24 to determine endoscopic and histologic scores by persons blinded to the treatments. The primary outcomes included the CDAI, endoscopic, and histologic inflammatory scores. Other outcomes included quality of life (QOL) according to the IBDQ and SF-36 surveys, and laboratory tests for safety. Results: Forty patients were enrolled and randomized into the study. Baseline CDAI scores (346±16.4) indicated moderate to severe disease. CDAI scores decreased significantly from baseline (p<0.001) in those treated with naltrexone, but not in placebo treated controls. Eighty-two percent of the naltrexone-treated subjects had at least a 70-point drop in the CDAI score indicative of a response and 45% achieved clinical remission (CDAI < 150). Endoscopy and histology inflammatory scores improved in naltrexone treated subjects (p=0.0019) with evidence of decreased mucosal inflammation, and restored crypt architecture. No endoscopic or histological change was found in placebo treated controls. No significant changes were noted in laboratory parameters or QOL surveys. Patients in the placebo group reported increased fatigue compared to naltrexone treated subjects (p=0.04) and two naltrexone-treated subjects had transient mild elevation in liver transaminases which resolved without interruption of therapy. Conclusion: Naltrexone induces mucosal healing and decreases CDAI scores in subjects with moderate to severe Crohn’s disease with minimal side effects recorded. Strategies to alter the endogenous opioid system provide promise for a novel treatment of inflammatory bowel disease in the future. (Supported by BMRP IBD-0180R and NIH DK073614).

[tex]

Good luck with this Zizzle, and please keep us posted.

Tex

[DJ]

I agree that LDN has very few side effects. Good luck!

[Sheila]

Good luck, Zizzle. You are doing a good job of taking care of yourself intelligently. Please keep us informed of how you are doing.

Wishing you the best,
Sheila W

[LindyLou]

I spoke with my PCP regarding LDN therapy. He had never heard of it being used in low dose form but is looking into it for me. Thank you for the link, I am going to forward it to him. I've been working this past year trying to lower my Hashimoto's antibodies and have had some success (they were 4200 in April and last month are now at 1300) still awfully high but I have made progress. I have read a lot of research on LDN results and am very encouraged that it will help stop this Hashimoto's attack. My endo knows next to nothing about it so I'm not going to even try to convince him. Since this attack started, I have also acquired additional food sensitivities which affects my MC so perhaps it will help that also. Hope it works for you Zizzle and you can get the relief you are looking for.

Linda

[Zizzle]

Here is a treasure-trove of videos addressing every possible ailment treated with LDN.

https://www.youtube.com/user/TheLDNresearchtrust

[Leah]

I hope it works for you Zizzle!

Leah

[Martha]

Best of luck with this treatment, Zizzle.

Martha

[wmonique2]

Hi Z.

Good luck---keep us posted. I considered using it but got intimidated because of the lack of sleep. I already take elavil for MC but as a benefit it helps me sleep. You know you can get it from India without prescription (very cheap). Kari takes it too (where is she btw, I haven't seen her on the forum for a while).

Anyway, we are all rooting for you and I hope that you'll handle it well.


Monique

[Lesley]

I sent the article to a friend, whose daughter has been struggling with Lyme's disease for a long time.
I hope it works for you.

I was on Methotrexate for a long time. I had no side effect issues with it, but neither did I feel any better.

[barbiem]

HI Izzie,

I have been taking LDN along with ketotifen since nov 12 - slowly building up my dosage. I am currently only at 1 mg of LDN with my 1 mg of ketotifen at night although I take ketotifen also in the am and mid day. I sleep like a baby at night at current dose. Vivid dreams - happy though and not scary like some people have. I am finally able to eat a few more foods and put weight on but still have to stick to a diet of low carb and no dairy. If I go off like I did tonight eating potatoes and carrots roasted in the pan with a chicken marinated in maple syrup - I will have issues - like tonight I had about 5 BM's because of that supper and anything I put in my mouth tonight caused me to go ! Not diarrhea mind you, but a regular BM. Weird! Wonder what it means when a person goes soooo many times ! I guess its similar to my IBS after eating foods I don't do well with and have to clean me out - just this episode doesn't entail major painful contraction like spasms. |

Anyways, I think LDN is the link and also ketotifen for my mast cell issues. I am back to work finally 4 full days per week but again I start feeling soooo good and then blow it by eating carbs like rice flour biscuits or pancakes but I can't help being bored of chicken, green beans, beef and asparagus every day breakfast, lunch and dinner day in and day out!! sometimes it's worth the many trips to the bathroom just to be able to eat with family what they are eating for supper for a change!!

Hopefully LDN works for you but start very very slowly so you can adjust as you go - I got mine compounded in a powder so I can adjust dosage in tiny increments due to my sensitivity self!!

barb

[Zizzle]

I had a great visit with my integrative medicine doc last night - 50 minutes with him! He was concerned about my widespread rash and neuropathy in my arms and hands (they always fall asleep). He said my autoimmune inflammation is causing a hyper-reflexive nervous system (when he banged on my joints with the little mallet, my joints jump too much). He was surprised I'm not in pain, but the low-dose prednisone might be suppressing pain symptoms. I guess I need to up my B-vitamins and magnesium...

He prescribed Low Dose Naltrexone and amazingly it is compounded at a small pharmacy near my house! He said more than half of his patients take it with great results and rarely any side-effects. He said he gets especially good results with Crohn's disease...which makes me think this will be great for MC. He subscribes to the microglial activation theory of disease. He says LDN works by suppressing the activity of microglia in the nervous system, which is where inflammation starts. He said people erroneously believe LDN works by affecting endorphin levels. He said in some diseases, there are very high endorphin levels. Apparently he's publishing a book about this in the coming weeks.

He supported my anti-inflammatory paleo diet, but said rice was fine. He's on the fence about nightshades - he does not think they add to autoimmune reactions, but they may bother people. He said I may be sensitive to corn, even though MRT and celiac cross-reactive testing said I wasn't reactive. He too gets sick from corn with no tests suggestive of reactivity. He did not know if small traces of corn, starch in meds, etc. would be a issue with this type of corn sensitivity. He cautioned that if I'm getting all my carbs from sweet potatoes and plantains, I will surely grow reactive to them, so rotation is important. He once again said I definitely have celiac disease, and he ordered a new Organic Acids urine test which will show if I have a form of clostridium bacteria (not the well-known c-diff), or yeast overgrowth. Depending on what you have, you treat one time with Vancomycin (clostridium) or Nystatin/Diflucan (yeast/candida). He's been using this test for a year and getting great results.

He said my rash is too widespread and the inflammation too out of control to let it go on much longer without shutting it down. If the LDN and any treatments after this test don't work in the next several weeks, I'll have to go back to my rheumy for methotrexate...

Here are some links to his theory, and insight into how political these diseases are. He just got appointed to a national advisory commission on ME/CFS, and some people are not happy with his theories.

http://www.kaplanclinic.com/dr-kaplan/c ... -syndrome/

http://www.occupycfs.com/2013/10/25/cfs ... ry-kaplan/

He says that the diversity of symptoms presented by his patients are different manifestations of a unified underlying cause: microglia activation. Microglia are immune cells in the central nervous system, responding to infection and sending powerful signals through cytokines and gene expression. Kaplan says that CFS, fibromyalgia, depression, post-traumatic stress disorder, and other conditions are all neuroinflammatory disease. The multiple labels and categories obscure the origin of disease. Kaplan says that many different triggers can up-regulate microglia cells. The more these cells are activated, the easier they are to activate, and a vicious loop is established in which the microglia are chronically activated resulting in inflammation of the central nervous system.

Kaplan is not the only proponent of this theory. There is evidence of microglia activation in Alzheimer’s, Parkinson’s, and some infections. Microglia activation in ME/CFS is also not a new idea (see page 12 of the report from the 2011 NIH State of the Knowledge Workshop). Kaplan says that microglia activation is a process, not an event. He uses detailed patient histories to identify the origin of the process, whether it is an infection or a traumatic childhood event. Next he focuses on sleep, looking for undiagnosed sleep apnea, narcolepsy, or restless leg syndrome. Kaplan points out that a recent paper suggests that the brain clears neurotoxins during sleep, underscoring the need for good restorative sleep. The next step is adding meditation, and then identifying food allergies and sensitivities. Through it all, Kaplan emphasizes the importance of close involvement and partnership between doctor and patient. Dr. Kaplan’s approach to treating microglia activation in depression and chronic pain will be published in May 2014 in The End of Pain, a book aimed at the consumer audience.http://www.kaplanclinic.com/dr-kaplan/c ... eo-series/

His new book:
http://www.amazon.com/The-End-Pain-Sick ... aplan+pain

This is the Organic Acids test he ordered:
http://www.greatplainslaboratory.com/ho ... ll_oat.asp

Let me know what you think! Is he on to something?
[/quote]

[Leah]

Sounds like you have a great doc there. It's a very interesting theory and I can think of a few people I know who might be interested in his book.
I hope the LDN works for you

leah

[tex]

Hmmmmm, interesting meeting. I dunno, we seem to be getting a little farther and farther out into left field. LOL.

If those guys were strictly talking about dermatomyositis, I can see how that could be the case, but apparently they're trying to claim that their theory applies to all autoimmune-type diseases. If any of this is true, then GI docs will soon be out of business, because they continue to look where the sun don't shine, and they're never going to see the light in there.

He says LDN works by suppressing the activity of microglia in the nervous system, which is where inflammation starts.

You know, back in the good old days, the nervous system simply reported trauma problems (including pain associated with inflammation) to the brain. Call me old fashioned, but attempting to reposition the nervous system as a generator of inflammation instead, appears to me to raise more than a few questions about the legitimacy of this concept. Why, for example, would such a possibility even exist? What would be the justification? The body is typically sufficiently sophisticated that it doesn't waste precious resources on unnecessary and unproductive phenomena. So why would it even incorporate such a counterproductive function of the CNS?

So how do these doctors explain all those lymphocytes that are hanging around in the mucosa of the gut of IBD patients, and promoting inflammation? There are no microglia in there. In fact there are no nerves at all inside the gut, for all practical purposes, they exist only on the surface of the serosa. Microglia could not cause MC if they wanted to, because they don't have access to the inflamed tissues in the lumen.

Yes, if this mode of inflammation actually exists, then I can see how it might be implicated with certain issues such as dermatomyositis, because that syndrome clearly has the potential to be involved with peripheral inflammation. But the type of inflammation that typically occurs with IBDs (within the gut) doesn't appear to meet the definition of peripheral inflammation, so it's not clear how there could be any justification for attempting to imply that this theory could also apply to most other autoimmune type issues.

That said, if this theory could somehow be shown to apply to MC, for example, then it would certainly explain the brain fog, because of the associated inflammatory response known (claimed) to occur in the brain, collaterally with the peripheral inflammatory response (and patterned after the response generated in the periphery, including activation of microglia, and increases in proinflammatory cytokines, TNF, etc).

Microglial activation and TNF-alpha production mediate altered CNS excitability following peripheral inflammation

I think the jury will still be out on this ruling, for many, many years to come.

He cautioned that if I'm getting all my carbs from sweet potatoes and plantains, I will surely grow reactive to them, so rotation is important.

That's BS. That claim has never been scientifically substantiated.

He said my rash is too widespread and the inflammation too out of control to let it go on much longer without shutting it down.

If he (and your rheumy) actually know what they're doing, then why is your rash still out of control?

Tex

[Zizzle]

If he (and your rheumy) actually know what they're doing, then why is your rash still out of control?

Well, he would argue I gave up on him too soon, and wasted a year with my rheumy trying to sort this out. You may recall this doc insisted I could not have DM, despite my self-diagnosis. He also insists I have celiac and leaky gut, and my job all along has been to seal my gut, which is obviously easier said than done (at least in one year's time).

I'm still amazed that diet and probiotics improved my condition 60% within weeks. I was literally a walking corpse before that. Just wish the progress would continue instead of plateau.

My rheumy would say I'm hard-headed, over-read and borderline non-compliant, since I always argue for the least amount of medication possible and keep delaying the inevitable heavy-duty meds.

The reality is that DM skin rash is probably the hardest of all rashes to treat. There is no medication guaranteed to have any effect on the rash, other than IVIG infusions, and the effects can wear off in less than a month!! The muscle disease responds to immune suppression way before the rash, and the sun ( and flourescent lighting!) is eternally problematic, even in remission. It's truly a f-ing curse.