Erythromelalgia Specialty Clinic
I will share my visit note with you all below, which highlights his recommendations for treatment.Yesterday I met again with Dr Mark Davis and went over results and treatment plan. All my tests were normal: EMG/nerve/muscle studies, thermoregulatory sweat test, blood work. My genetic test from University of MN is still pending. Otherwise there is no explanation for why I developed erythromelalgia. I am convinced it was from steroid injections due to the abrupt onset and timing. Dr Davis feels otherwise. My other concern was that my EM symptoms could be a delayed hypersensitivity reaction to the metal components of my artificial cervical disc, which I had surgery for on 11-1-16. My EM symptoms started 4-17. Dr Davis also feels that is not related. I am still scheduled for patch testing in March, as ordered by my neurosurgeon.
I did have a few additional questions for Dr Davis:
- Mayo's plan(s) for future research on EM
- His opinion on lidocaine infusions amy35
- His opinion of Bob's Protocol paula35I actually printed out a copy of Bob's Protocol and gave it to Dr Davis (thank you - I copied it from one of your recent posts).
His answer regarding Mayo's plans for future research on EM was the following: "We best gather information on what treatments work best for patients by asking them to message us via the online patient portal." That was the end of that topic..
In response to my question about Lidocaine infusions, he opened my patient handout folder and pulled out the stapled handout of journal articles on EM and pointed to the second to last article on the last page titled:Lidocaine and mexiletine therapy for erythromelalgia.Kuhnert SM1, Phillips WJ, Davis MD.Arch Dermatol. 1999 Dec;135(12):1447-9.PMID: 10606048https://www.ncbi.nlm.nih.gov/pubmed/10606048He asked me if I had read the article, and admittedly I had not, but promised him I would.I had spent several hours in the Patient Library at Mayo watching videos on EM, I had watched a hundred times as well as reviewing my folder stuffed with handouts.I then mentioned that a local St Cloud, MN father and son both are now pain free thanks to the Lidocaine Infusions. Dr Davis did say he watched [amy35]) husband's story on Kare 11 news Christmas Eve. He was happy to hear that.He also said if I ever decided to consider Lidocaine infusions, I could receive treatment "locally in the cities".
Bob's Protocol.. I gave Dr Davis the handout and asked if he was familiar with heat desensitization therapy for EM. He indicated he was not. He reviewed the two pages I printed out for him and his response was " I would believe that heat would worsen EM symptoms, but you can certainly try it if you want."I then mentioned that I have read mixed reviews in the forums, but have read that numerous people have benefited from it tremendously.
I am still mentally processing the past three days.I was treated very well at Mayo Clinic by Dr Davis and his colleagues. I am at peace knowing I have a diagnosis. I am grateful I do not have any evidence of underlying disease. I am hopeful that one of these 3 creams will help relieve my discomfort. However, I still wish to know why? I want others to know why? I wish for everyone to be pain free and live a normal life.My best advice to anyone who has or is planning to visit Mayo for EM is to message Dr Davis, via the patient portal with updates. Let him know which treatments did or did not work for you. He asked that I message him in 3 months and let him know which of the three topical prescriptions he prescribed worked the best.My take on all of this is that Mayo's current method/focus of researching EM is based on patient feedback of their response to treatment. I wish Mayo would conduct more official research, as Dr Davis even admits in his Up-to-Date article that EM is poorly understood.
As I mentioned earlier I have included my visit note below highlighting my diagnosis and treatment plan. Hopefully some of you will find this helpful.
#1 Erythromelalgia involving hands and feet and occasionally face by 9 months
Comment-I discussed with Ms Harrill the findings. It is very encouraging that she does not have anidentifiable large or small fiber neuropathy, and of her lab tests are all within normal range. Wediscussed the management regimen as outlined below with her again and I encouraged her to tryparticularly the topical treatments as outlined. We prescribed the topical treatments as outlined undermedications.One of her main questions is why this started. She does point out as detailed in her history on Mondaythat this started after injections at trigger points and she wonders whether the steroid injections couldhave precipitated the erythromelalgia. I advised her that while these were temporary related in onset, itwould be difficult to see a mechanistic link between the injections into her neck and the development oferythromelalgia involving her hands and feet. It also would be difficult to say why injections done last April would have led to sustained episodes of erythromelalgia now.
- Patient education-publications concerning this entity.
- Prognosis- over time, the symptoms may worsen, stay the same, or get better. It happens about equalportions of people over time. In approx. 10%, patients may report resolution of symptoms
- ManagementThe aim of management is that you will get back to as normal a style of life as possible. Our aim is to getyour erythromelalgia under control and also to learn to live with whatever is left.My experience is that most patients can get acceptable control of their symptoms with lifestylemodifications and topical treatments; only a minority of patients need systemic medications.There are three main strategies that we use to achieve this*the use of topical medications for this,
- the use of systemic medications for this, and
- the employment of the Pain Rehabilitation Center in patients who are very disabled by the symptoms.Lifestyle changes-- avoid situations as much as practically possible that set off symptoms, while keepinga balance and trying to maintain a normal lifestyle. This is a difficult balance, but ideally, she should beable to return to a normal style of life and not be inhibited by her symptoms as this is the aim of themedications that we have been prescribing.
Cooling behaviors:Moderation is key.
- It is okay to use techniques that cool the affected areas for short periods of time (eg 5 minutes every1-2 hours), but these should not be used for prolonged periods as they can damage the skin, vasculatureand nerves in the affected area and in the long run make the pain worse and lead to complications.
- Also moderation in the technique used is advisable- avoid extreme behaviors. Cool water indirectlyapplied to skin is advisable - but not ice or very cold water directly applied to the skin. Examples that patients report that help include Chillow pillows but again, these should be used for short periods. http://www.chillow.com/chillow.htmlSuggested activitiesMany patients report that swimming is helpful to them.
- Patient support groups- The Erythromelalgia Association, chat groups on Google, Yahoo, other socialmediaTopical treatments that may help are as follows.Each should be tried one at a time for a period of 2-4 weeks, if medication does not work then move onto the next medication.It would be very helpful if you could let us know which of below you have found most helpful via thepatient portal after approximately 3 monthMost of these prescriptions are compounded products: it is best to have compounded creams filled atMayo Clinic as they are familiar with how to compound these specific ones
For the pain:
- A trial of amitriptyline 2% and ketamine 0.5% applied up to three times daily. Many patients reportthat this helps tremendously with their discomfort, but other patients say it does not work at all. I haveadvised to try this. If it does not work, a trial of giving a mixture with a higher concentration of ketaminesuch as 5% ketamine instead of 0.5% ketamine could be considered as a trial.o Amitriptyline 2% combined with ketamine 0.5% in lipodermo Amitriptyline 2% combined with ketamine 5% in lipoderm
- Trial of pain-relieving rub or patch (Ultra Strength BenGay Cream, Ultra Strength BenGay PainRelieving Patch, others),
- Voltaren 1% gel applied QID
- gabapentin ointment 6% in aquaphor or vanicream
- High-dose topical Capsaicin patch (Qutenza)--this recently came on the market, but we have notused it in anybody with erythromelalgia yet. Again, this might be a consideration in the future if the othertreatments have not worked. http://www.qutenza.com/
For the redness:Available over the counter:
- Afrin spray (oxymetalazine) 2-3 times daily to affected areas
- Preparation H applied 1-3 times daily to affected areasAvailable by prescription
- Once-daily topical brimonidine tartrate gel 0.05% (Mirvaso) (FDA approved for the redness ofrosacea) could be tried- apply 1-3 times daily
- Topical Timolol
- Topical midodrine 0.2% in Vanicream applied TID (compounded only at Mayo Clinic)
Systemic treatments:All systemic treatments are associated with potential side-effects, and different people respond todifferent drugs. These are summarized in the manuscripthttps://www.ncbi.nlm.nih.gov/pubmed/12003720Drugs that have been reported to help include:
- Aspirin- Trial of aspirin (if not contraindicated) 325 mg daily x 1 monthBecause a subset of patients respond to aspirin (particularly erythromelalgia associated withmyeloproliferative disease), it is always worthwhile trying oral aspirin first for up to a month to see if thathelps symptoms
- Other drugs used for small fiber neuropathy
- MisoprostolPain Rehabilitation Centerhttp://www.mayoclinic.org/pain-rehabilitation-center-rst/Other considerations:
- Botox- a couple of case reports suggest that it may help
- Scrambler therapy- pain consult (specify this)a. Scrambler therapy is an experimental technique being tried for patients with erythromelalgia. If youare interested in this technique please visit this website: http://cprcenters.com/Stephen J. D'Amato,MD,FACEP is the physician who specializing in administering this treatment:(Calmare Pain Mitigation Therapy); his receptionist and assistant is Bonita SpringsScambler is a technique that scrambles nerve signals. You would visit with Dr. D'Amato's team whowould decide if you would be a candidate for a trial of this therapy and discuss this with you. This can beexpensive, usually not covered by insurance, and require multiple visits. We also don't know if it willwork for you.
- IV solumedrol if sudden and acute in onset, short history
- IV magnesium: 1 gm, frequency every 1-2 weeks, depending on how long effect last; then use 2 gmif toleratedhttp://sharing.mayoclinic.org/discussion/breaking-away-from-the-pain-with-the-help-of-the-scrambler/
- Transcranial magnetic stimulation
Other medications that could be tried in the future:
Lidoderm patches-- could try Lidoderm patches. These are easiest to use on the dorsal feet.