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Guide

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  1. Every year for some time now I have been reviewing the NRS Form 990 which was recently posted on its web site (the NRS filed an extension). It is similar to the other reviews I have given in the past (2013 or 2014). Very few are interested in how the NRS spends it money nor care at all. As far as I know I am the lone watchdog on the NRS. However, since the NRS was the chief reason the RRDi was formed because we thought donated funds could be better spent than how the NRS spends its donated funds giving rosacea sufferers an alternative, you may see why I continue to monitor and review the NRS spending and post my review. 

    The nutshell version for 2015 is that the NRS received $520,532 in revenue and spent $659,106 in expenses. You may wonder how they can do that but the simple reason is that the NRS has assets which they can draw upon when the NRS spends more than it receives in donations. The NRS spent $75,010 on research grants. So that amounts to 14.41% of its donations. To put this in perspective, every dollar donated in to the NRS in 2015, about 14 cents was spent on research grants. 95% ($494,219) of the donations were spent on two private contractors, Glendale Communications Group, Inc. and Park Mailing and Fulfillment, Inc. that are owned by Sam Huff, President of the NRS. It was also reported that Sam received $114,117 in salary while his secretary, Mary Erhard, received $39,364. 

    Here is a breakdown of the Form 990: 

    Form 990 Part 1 Revenue

    Line 8 Contributions and grants  $462,608

    Line 9 Program service revenue $  57,674

    Line 10 Investment Income         $       250

    Total Revenue                             $520,532

     

    Expenses 

    Line 13 Grants and similar amounts paid $ 75,000

    Line 17 Other expenses                           $584,096

    Total expenses                                         $659,106

     

    Part VII Compensation of Officers, Directors, Trustees, Key Employees, Highest Compensated Employees, and Independent Contractors

    Section A

    (1) Samuel B Huff, President 

    Reported compensation from related organizations $114,117

    (2) Mary F. Erhard, Secretary

    Reported compensation from related organizations $ 39,364

     

     

    Schedule R Part V Transactions with Related Organizations

    Note 1

    m Performance of services or membership or fundraising solicitations for related organization(s)

    n Sharing of facilities, equipment, mailing lists, or other assets with related organization(s)

    o Sharing of paid employees with related organization(s)

    Note 2

    (1) Glendale Communications Group, Inc (c) $447,912

    (2) Park Mailing and Fulfillment, Inc.         (c)  $ 46,307

    Total Transactions                                           $494,219

     

    2015 NRS Form 990

    For a spreadsheet of all the years reviewed click here

     

  2. PainFree-IBU Fast Gel
    • Ketamine 10%.......NMDA Blocker, Analgesic
    • Gabapentin 4%..............Nerve Blocker
    • Ibuprofen 10%...............Anti inflammatory
    • Diclofenac 4%................Anti inflammatory
    • Amitriptyline 1%.............Nerve Blocker
    • Cyclobenzaprine 2%..... Muscle Relaxant
    • Apply 0.5-1.0ml 3-4 x daily
    • Use 1-4 drops on the affected area either alone or after the PLO gels. Response is in 1-2 minutes.

    The Lost Art of Compounding June 18, 2010, Tom Schnorr, RPh, CCN
    Apothecary Shop Pharmacy

     

  3. Amitriptyline

    Ketamine

  4. Neuropathy & Neuralgia Therapies
    Local Anesthetics, Gabapentin, Ketamine, Amitiptyline
    ❧ Bind to Na+, K+ and Ca2+ channels in damaged nerves to suppress abnormal spontaneous activity
    ❧ Disrupt G protein coupling to produce anti- inflammatory effects
    ❧ Typical usage has been shown to be safe and without serious adverse effects
    ❧ Consider surface area
    Flores et al Rev Bras Anestesiol 2012;62(2):244-52, Shipton Anesthesiol Res Pract 2012:546409, Drugdex Evaluations [Internet]. Cited April 2012

    Compounded Specialty Prescriptions in Women’s Primary Care
    Natalie Gustafson, PharmD
    Director of Pharmacy at Lloyd Center Compounding Pharmacy & Pacific Compounds Pharmacy
    July 20, 2014
     

  5. "At this point, twice daily applications of topical 2% amitriptyline compounded with 0.5% ketamine in an organogel were added to the patient’s treatment regimen. The gel was initially applied only to the skin surrounding the affected area, but as the erosions healed the gel was applied to the area of herpetic infection."

    Amitriptyline/Ketamine as Therapy for Neuropathic Pruritus and Pain Secondary to Herpes Zoster
    JDD, February 2015 | Volume 14 | Issue 2 | Original Article | 115 | Copyright © 2015
    John R. Griffin MD and Mark D.P. Davis MD

    Topical gel combo decreases severe pruritus, pain in shingles-related case
    Dermatology Times, March 16, 2015 By Bill Gillette

    "In conclusion, this randomized, placebo-controlled trial examining topical 2% amitriptyline, 1% ketamine, and a combination of both in the treatment of neuro- pathic pain revealed no differences between groups. Optimization of doses may be required, because another study has revealed that higher concentrations of these agents combined do produce significant analgesia."

    Anesthesiology 2005; 103:140 – 6 © 2005 American Society of Anesthesiologists, Inc. Lippincott Williams & Wilkins, Inc.
    Topical 2% Amitriptyline and 1% Ketamine in Neuropathic Pain SyndromesA Randomized, Double-blind, Placebo-controlled Trial
    Mary E. Lynch, M.D., F.R.C.P.C., Alexander J. Clark, M.D., F.R.C.P.C., Jana Sawynok, Ph.D.,‡ Michael J. L. Sullivan, Ph.D.

    "This pilot study demonstrated a lack of effect for all treatments in the 2 day double blind placebo controlled trial, followed by analgesia in an open label trial in a subgroup of subjects who chose to use the combination cream for 7 days. Blood analysis revealed no significant systemic absorption of either agent after 7 days of treatment, and creams were well tolerated. A larger scale randomized trial over a longer interval is warranted to examine further effects observed in the open label trial."

    Clin J Pain. 2003 Sep-Oct;19(5):323-8.
    A pilot study examining topical amitriptyline, ketamine, and a combination of both in the treatment of neuropathic pain.
    Lynch ME, Clark AJ, Sawynok J.

    "This study demonstrates that topical 2% amitriptyline/1% ketamine, given over 6-12 months, is associated with long-term perceived analgesic effectiveness in treatment of neuropathic pain. Antidepressants and ketamine both produce multiple pharmacologic effects that may contribute to peripheral analgesia; such actions include block of peripheral N-methyl-D-aspartate receptors, local anesthetic properties, and interactions with adenosine systems."

    J Pain. 2005 Oct;6(10):644-9.
    Topical amitriptyline and ketamine in neuropathic pain syndromes: an open-label study.
    Lynch ME1, Clark AJ, Sawynok J, Sullivan MJ.

  6. Dry Eye: Awareness, Diagnosis, and Management
    Why prevalence increases after menopause
    JOSEPH MUSSOLINE, MD

    Dry-Eye-Awareness-Diagnosis-Management.pdf

    "The results of this study suggest that, in patients with moderate to severe symptoms, combination therapy of intense pulse light (IPL) and meibomian gland expression (MGX) could be a safe and useful approach for improving signs of dry eye disease (DED) due to meibomian gland dysfunction (MGD)."

    Intense pulsed light improves signs and symptoms of dry eye disease due to meibomian gland dysfunction: A randomized controlled study

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  7. "Pharmaceutical companies are working to bring the combination to market, but it’s not yet available commercially, so Mayo Clinic dermatologists have their pharmacists compound it in two strengths – 2% amitriptyline and either 0.5% or 5% ketamine – using Lipoderm cream as the base, according to Dr. Davis. Patients apply the mixture three times daily. Why it works isn’t clear; the drugs have different and perhaps synergistic effects on skin pain.....Of more than 1,000 Mayo Clinic patients who have tried the combination, "I’d say less than 1% has told me that they’ve ever had a side effect," he said. "I’ve had just two or three patients tell me they’ve gotten nightmares," a known effect of ketamine. "This is a product that has great promise," he noted."

    Dermatology News
    Creams and patches can replace narcotics for skin pain
    Publish date: December 4, 2013
    M. Alexander Otto  Frontline Medical News

  8. A similar compounding numbing cream that contains ketamine 5%, amitriptyline 2%, clonidine 0.2%, gabapentin 5% in a base of lipoderm has been reported by Elanor Linsel for dysautonomia. 

    "The dysasthesia can be very disturbing for many patients and improved with amytriptyline or gabapentin." 

    Rosacea: Choosing Among the Topical and Systemic Therapeutic Options
    As the field of therapies available for rosacea has expanded, clinicians must weigh the topical and oral treatment options on a case-by-case basis
    By Mark Bechtel, MD and Ann Bechtel, BSN, Practical Dermatology

     

  9. "The pathogenesis of IFAG is still unclear but it is likely to be associated with granulomatous rosacea in childhood....supports the hypothesis that IFAG may belong to the spectrum of rosacea." [1]

    Images of IFAG

    End Notes
    [1] Case Rep Dermatol. 2016 May-Aug;8(2):197-201
    Idiopathic Facial Aseptic Granuloma in a 13-Year-Old Boy Dramatically Improved with Oral Doxycycline and Topical Metronidazole: Evidence for a Link with Childhood Rosacea.
    Orion C, Sfecci A, Tisseau L, Darrieux L, Safa G

    Reply to this Topic
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  10. "Conclusions: A majority of patients with erythromelalgia (75%) reported improvement in pain with topical application of a compounded amitriptyline-ketamine formulation. The medication was well tolerated."

    Neurology, Mayo Clinic
    Topical amitriptyline combined with ketamine for the treatment of erythromelalgia: A retrospective study of 36 patients at mayo clinic
    Timothy J. Poterucha, Sinead L. Murphy, Mark D P Davis, Paola Sandroni, Richard H. Rho, Roger A. Warndahl, William T. Weiss

    JDD, March 2013 | Volume 12 | Issue 3 | Original Article | 308 | Copyright © 2013

  11. Found one other anecdotal report, Despotic_Monarch, who reports, "The only thing out of 25 or so drugs/medications that worked is a cream base that contains... Ampitriptyline 1.0%/ Ketamine 0.5% cream in a 1 to 1 ratio. In just one week I went from being a tomato to a piece of paper and finally my skin can heal. If you are suffering from Rosacea this might be an amazing/safe treatment for you! Please see your derm."

  12. Sent the following question to the RRDi MAC Members (responses will be in this post): 

    RRDi MAC Members, 

    What are your thoughts on this treatment for rosacea: 

    http://irosacea.org/members/forums/topic/3074-ketamine-05-and-amitriptyline-1-for-rosacea/

    Responses

    Amitriptyline is sometime used for treatment of migraine. There is an obvious link between certain rosacea features and migraine. 
    We have in clinic seen some patients with good efficacy of anti-migraine agents (e.g. triptans) for rosacea. We are just now starting trials on this.

    There may be a similar mode of action, at least for the amitriptyline.

    Best

    Alexander Egeberg, MD PhD

    Gentofte Hospital
    Department of Dermatology and Allergy
    Kildegårdsvej 28
    2900 Hellerup
    Denmark 

    --------------------------------------------

  13. Subtypes have been replaced with the phenotype classification of rosacea. The older, outdated subtype classification used four subtypes ETR, Papulopustular, Ocular and Phymatous). The current state of the art classification uses six phenotypes (Flushing, Erythema, Telangiectasia, Papulopustular, Phymatous, and Ocular). 

    Here is the history:

    The ROSCOE panel in October 2016 was the first to recognized, recommend and endorse the phenotype classification of rosacea. The RRDi endorsed the new Phenotype classification of rosacea in November 2016Galderma acknowledged the phenotype classification about a year later. In November 2017 the NRS has now moved forward with classifying rosacea into phenotypes with its own published paper following the lead set by the ROSCOE Panel. [1] 

    Medscape has recognized the phenotype classification of rosacea [scroll through this thread to the fifth post].

    The RRDi recognized Neurogenic Rosacea as a subtype of rosacea since 2011, but now recognizes Neurogenic Rosacea as a rosacea variant, among thirteen other rosacea variants. There is no consensus with the non profit organizations for rosacea on what constitutes a rosacea variant. Hopefully, someday there may be consensus. 

    We are keeping the subtype classification CATEGORY [Subtypes] in this forum because it has been the standard since 2002 for historical reasons, since much of the past medical papers published in journals and on Pubmed as well as current ones continue to refer to to the old subtype classification However, the RRDi has endorsed a new direction in diagnosing rosacea since the phenotype classification is superior and the subtype classification has been controversial since its inception

    Rosacea Variants are another valid classification system and the RRDi has thirteen rosacea variants listed. The subtype classification of rosacea is now history. We are keeping any phenotype updates posted here

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    End Notes

    [1] Standard classification and pathophysiology of rosacea: The 2017 update by the National Rosacea Society Expert Committee

  14. Please note: There are no confirmed reports that this treatment for Erythromelalgia works for rosacea. There are scant few anecdotal reports of using this treatment for rosacea which are collected in this topic (thread) which seem promising. You should find a doctor who is willing to write you a prescription for this and find a compounding pharmacist. We would ask if you try this treatment to post your results in this thread so others can benefit from your experience. We have gathered together in this thread as much information on this subject as possible. If you can add something please find the reply button and post your comment. 

    An ointment made by Compounding Pharmacists of Ketamine 0.5% and Amitriptyline 1% in a Lipoderm cream used for Erythomelalgia has been reported by Deansm (scroll below) to improve rosacea.  

    "Erythromelalgia is a clinical syndrome characterized by attacks in which the affected limbs become bright red, hot, and excruciatingly painful. The common trigger is heat exposure induced by exercise or increased ambient temperature. As the condition progresses, the limbs become permanently red, hot, and painful....According to various theories, erythromelalgia is a vascular disorder or neuropathic condition. In previous studies, we have shown that both systems are involved, but we do not know which one is affected first. It is plausible that the vascular and neuropathic components differ in each subject depending on the underlying cause....Nonetheless, this strategy offers the flexibility of easy application, no systemic adverse effects, and the possibility of combining it with other treatment options without concern of drug interactions. The combination gel has to be compounded by a pharmacist, which may be a problem for some patients, but it seems to be fairly easy to do and at a much lower cost than for most treatments commonly used."

    Erythromelalgia is difficult to diagnose and to treat. For more information

    The Cutting Edge
    March 2006
    Arch Dermatol. 2006;142(3):283-286. doi:10.1001/archderm.142.3.283
    Combination Gel of 1% Amitriptyline and 0.5% Ketamine to Treat Refractory Erythromelalgia Pain
    A New Treatment Option?
    Paola Sandroni, MD, PhD; Mark D. P. Davis, MD

    "Ketamine, sold under the brand name Ketalar among others, is a medication mainly used for starting and maintaining anesthesia. It induces a trance-like state while providing pain relief, sedation, and memory loss. Other uses include for chronic pain and for sedation in intensive care." Wikipedia

    "Amitriptyline, sold under the brand name Elavil among others, is a medicine used to treat a number of mental illnesses. These include major depressive disorder and anxiety disorder, and less commonly attention deficit hyperactivity disorder and bipolar disorder. Other uses include prevention of migraines, treatment of neuropathic pain such as fibromyalgia and postherpetic neuralgia, and less commonly insomnia. It is in the tricyclic antidepressant (TCA) class and its exact mechanism of action is unclear." Wikipedia

    "Pharmaceutical compounding (done in compounding pharmacies) is the creation of a particular pharmaceutical product to fit the unique need of a patient. To do this, compounding pharmacists combine or process appropriate ingredients using various tools. This may be done for medically necessary reasons, such as to change the form of the medication from a solid pill to a liquid, to avoid a non-essential ingredient that the patient is allergic to, or to obtain the exact dose(s) needed or deemed best of particular active pharmaceutical ingredient(s). It may also be done for more optional reasons, such as adding flavors to a medication or otherwise altering taste or texture. Compounding is most routine in the case of intravenous/parenteral medication, typically by hospital pharmacists, but is also offered by privately owned compounding pharmacies and certain retail pharmacies for various forms of medication. Whether routine or rare, intravenous or oral, etc., when a given drug product is made or modified to have characteristics that are specifically prescribed for an individual patient, it is known as "traditional" compounding." Wikipedia

    There is a difference between a pharmacist and a compounding pharmacist. Whether your insurance covers a compounding pharmacist is another matter you will need to investigate. A prescription from a medical doctor is required for the compounding pharmacy to make the prescription. The ointment can be any type the pharmacist has available. This is like the old fashioned pharmacist who has a motar and pestal

    Motar and Pestal


    Wikipedia Commons

    Deansm Report Using Ketamine 0.5% and Amitriptyline 1% for Rosacea

    "Two months ago the GP I am seeing prescribed me an ointment containing Ketamine 0.5% and Amitriptyline 1%. Withing 3 days of using it twice a day the flushing disappered and my skin is white, the same as it was before Rosacea. It has been the same ever since for the last two months. I can eat, excersie, go out in the sun and nothing will bring on a flush. 
    If anyone has this subtye and nothing has worked have a look into this, I have no side affects (the GP said it is very safe as the amount of active ingredients is too low and it's not absored systemically).......The packaging has no branding, it was made in a compounding pharmacy. He said he has found it helpful going back years for patients with Erythromelalgia and it was worth trying for my Rosacea as nothing else worked." Deansm

    There are other anecdotal reports using this treatment which are shown in this thread by scrolling down to the December 5 and also the December 28 post listing them. 

    Reply to this Topic

    There is a reply to this topic button somewhere on the device you are reading this post. If you never heard about this topic and you learned about it here first, wouldn't it be a gracious act on your part to show your appreciation for this topic by registering with just your email address and show your appreciation with a post?  And if registering is too much to ask, could you post your appreciation for this topic by finding the START NEW TOPIC button in our guest forum where you don't have to register?  We know how many have viewed this topic because our forum software shows the number of views. However, most rosaceans don't engage or show their appreciation for our website and the RRDi would simply ask that you show your appreciation, please, simply by a post.  

     

     

  15. 8 hours ago, MariaSt said:

    Hi, Brady. I think that you are doing just fine. I had a similar experience with a generic ivermectin cream,after an initial breakout with some red spots, which vanished fast, I didn't notice any significant improvement for the next 7 weeks and stopped the treatment, unfortunately. I understood my mistake a few days later, when my skin started deteriorating again. Anyway, there are some people who report improvement after many months of use, so be patient.

    Thanks MariaSt for the encouragement. Yes, from what I have read from other users it takes months to see improvement. I am willing to try 90 days and if there is improvement I will stick it out longer. But if I keep looking like this, I know how to control my rosacea with sulphur creams and diet. I also take probiotics. So what is your current regimen?

  16. skullmcrex (post #21) recommends "I think all rosacea sufferers should try cleansing milk they're really great. In terms of how I use it, wash my hands, apply to my DRY face, slowly message in outwards circles, and inwards if I feel appropriate (whatever doesn't physically irritate your skin) and then gently rinse off my fave using the technique of putting my hands together, cuping LUKEWARM water and GENTLY pressing it against each cheek and then following up your face, repeating this technique for every other part of your face. Basically what this girl does but when less rigourous/microscopic cleaning with the fingers, and less, but the occasional inwards circle motions too. (Find what annoys your skin the least it's imperative. I'm sure if you don't have the product where you are any "sensitive" cleansing milk would do well. It's been a revelation to me, my skin feels climbed without SLS bombarded and without drying it too much with over application of water. I do a even less vigourous approach to cleansing, less quick/hard but slightly more cleansing. The thing about the pinkies is very interesting too. I don't do everything she says but it's very interesting to me."  Watch the video skullmcrex recommends below: 

     

  17. "Using only natural ingredients, researchers have found a way to structure sugar differently. So even when much less is used in chocolate, your tongue perceives an almost identical sweetness to before.
    The discovery will enable Nestlé to significantly decrease the total sugar in its confectionery products, while maintaining a very natural taste.
    'This truly groundbreaking research is inspired by nature and has the potential to reduce total sugar by up to 40% in our confectionery,' said Stefan Catsicas, Nestlé Chief Technology Officer.
    'Our scientists have discovered a completely new way to use a traditional, natural ingredient.' "

    Nestlé has one of the largest R&D capabilities in the food and beverage industry, with 40 R&D locations worldwide and more than 5,000 people working in R&D.

    Compare original sugar crystals with the new and improved sugar crystals.

    This will be good news to rosacea sufferers who find that sugar triggers their rosacea. 

    Less sugar, great taste: A scientific breakthrough from Nestle
    Introducing a new structure for sugar, inspired by nature
    Marketwired

  18. It has been one month. I apply Soolantra on all my red spots every night. I wash my face in the morning and apply absolutely nothing. I have tried to keep my diet going as best as I can. This past week I did have a couple of Longboard beers. Other than than those two beers, a very healthy high protein diet with some green veggies, lots of water, plenty of exercise (Walk 4.4 miles to the beach about four or five times a week). I haven't seen much improvement in my rosacea, but I will stay on this for three months to see what happens. Basically, after thirty days I am still breaking out with rosacea. I get those little white pustules and they turn into scabs after I remove them. I will stick it out 90 days to see if it improves. It is tough to go through this. Using sulphur creams works for me so to try this regimen isn't for sissies. Here are my photos: 

    Photo on 11-30-16 at 10.01 PM.jpg

    Photo on 11-30-16 at 10.01 PM #2.jpg

    Photo on 11-30-16 at 10.01 PM #3.jpg

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