Questions about meds and things that work (or don't)

General
1

Hi all,

I've been reading and commenting on many posts by others and I have been wondering a few things. First, I'm curious about how many people have primary EM vs secondary, and if so, did you have the genetic testing done?

I've also been wondering about comorbidity with other conditions. For example: migraine / cluster headaches are also neurovascular and oftentimes have similar triggers. Also wondering about prevalence of autoimmune type disorders since I've seen many people mention being being tested for or treated for those.

Then of course, the meds... I'm quite curious about what meds help, which ones aggravate, and which ones have side effects so intolerable that you just don't know whether they help.

For example, I tend to get cluster headaches, and an occasional classic migraine. I also have some sort of weird thing where my tendons and maybe ligaments are hypomobile - almost an opposite ehlers-danlos syndrome thing. I sometimes feel that the extreme hypomobility creates inflammation around my peripheral nerves, worsening the pain, the heat, and the neuropathic symptoms. I've been told I have severe contractures much like individuals with cerebral palsy, though much less debilitating. But still have no clue.

Anyway, have been tested for many things but I can't really even locate a dr where I live who knows what EM is, much less how to test for it.

I Have tried many medications and found that I really couldn't tolerate the doses I needed to get to of neurontin or lyrica for them to help, because they made me feel really foggy headed and dopey. I've been taking topamax long term for the cluster headaches but I have to take a tiny dose because, well, they call it "dopamax" for a reason. I have a quasi solid diagnosis of Crohn's Disease, so I cant really take NSAIDS very often, so I end up taking opiate pain meds throughout the day. I also take 1 or 2 types of muscle relanants to help break up some of the spasms, and because they actually work at the nerve - muscle junction, I really think they help more than anything else (at least in an adjunctive role) for helping to control a lot of the pain I get in my hands.

Has anyone else on here had similar experiences? I know a lot of this is personalized info / history, and you certainly don't have to share. I am just curious about how this manifests in others, what has worked, what hasn't, and so on.

Thanks!!!

Linda

2

My EM is considered to be secondary to an as-yet undifferentiated systemic autoimmune disease. When my EM started, I was already taking 25mg twice daily of amitriptyline for nerve pain, and it may be helping dull the pain of the EM.

I am currently taking 50mg/day of sertraline, which my rheumatologist prescribed for the EM. I was surprised to find that it does work to an extent-- since starting the sertraline, the frequency and severity of my EM flares have been reduced.

I have no significant side effect from either of these medications. The give me a bit of a dry mouth, but that is about it.

3

Ellie - you are taking both amitriptyline and sertraline? doesn't the combo leave you somewhat in a fog? I found I really couldn't tolerate either of the 2 meds! do you think either or both help prevent flares, or primarily help decrease the pain from them?

Linda

4

Linda, the key is that I take low doses of both of them. I was groggy after my first few doses of amitriptyline, but now I take 25mg morning and night (compared to 75-150mg/day dose for depression), and I feel pretty normal. I take sertraline only in the evening, but don't think it's made me too foggy.

I think amitriptyline helps a little with the pain, but I primarily take the amitriptyline for non-EM related nerve pain that developed in my legs before I ever had EM. But my doctors think it has made my EM a bit less painful.

The sertraline has definitely reduced the frequency of my flares, and the flares I do have are less severe and last for shorter periods of time. There is still pain, of course, but they're over so much faster! Plus, not having near as many flares as I used to has made the sertraline well worth it. I just take it once a day, so if it makes you groggy, maybe you could try taking it only at night. As with all treatments for EM, my doctors say it works for some people and doesn't for others. But it could be worth a try. It's worked pretty nicely for me.

Though I would love to get rid of EM completely....!

5

Thanks for the feedback (again)! Amitriptyline is rarely used anymore as an antidepressant basically because as you already stated, the doses you have to use are much higher and tend to cause a lot of side effects (drowsiness, dizziness, increased thirst, , increased body temp (!), foggy head, etc). These days most people take it for peripheral neuropathies - generally though due to diabetes.

I tried Amitriptyline a long time back when I started experiencing severe feet pain while in pharmacy school and on my feet for 8-12+ hours/day 5+ days a week rounding with the other pharmacy and med residents and students. it made me, even at 1/2 of a 10mg tablet, completely zonked and feeling brain dead.

I could never tolerate the SSRIs like zoloft at any dose, but I've had decent luck with effexor, technically an SNRI. I suppose the effexor helps reduce much pain, not really certain but I sure don't want to stop it to find out.

I believe if there is ever a creative pharmacogenetic test solution to tell right off the bat which meds llike these would work for an individual and at what dose, life would be a heck of a lot easier!

6

Seriously. I have about 20 half-filled bottles of everything from gabapentin to carbamazepine and all points in between that I tried over the course of two years to treat my nerve pain before I found a combo that was relatively effective.

Someone needs to come up with that test.

7

Agreed !. I have a bunch just sitting around as well. Hate to just toss them...

8

hi linda;greetings from nz; land of the long white cloud. with winter blooming it is living up to name. yes i had genetic testing last year which proved neg; also primary cause has been ruled out. having had service in vietnam pointed the finger at agent orange which our veteran affairs has ack noledged.present meds are of little use but help with other conditions. the colder weather gives some relief. no that vet. affairs will cover cost of meds, i intend trying pregabalin pres. by specs. over 2 years ago. has similar side affects to gabbapenton. cheers &best wishes from the YETI

9



hi yeti, where in the amazing world of aotearoa are you? has to be one of my most favorite places on the planet! sooooo jealous :)

anyway, thanks for the input re the genetic testing. I will probably request the test to be done but... seems like I always test negative for everything. I'm sure that your exposure to the agent orange probably did contribute to the neuropathy. I really believe many people probably have a genetic tendency to something if the right exposure comes along and scrambles the right dna sequence.

as far as the gabapentin vs lyrical (pregabalin) thing, I would say it is worth a try. the 2 compounds are distinct enough that many people can take sufficient amount of medication with fewer side effects. the effects are a bit longer lasting so it only has to be dosed 1-2x/day vs the gabapentin, which is dosed 3-4 x/day.

for whatever reason neither worked particularly well for me, but maybe I didn't get to high enough doses.

enjoy your beautiful winter !

linda

eti said:

hi linda;greetings from nz; land of the long white cloud. with winter blooming it is living up to name. yes i had genetic testing last year which proved neg; also primary cause has been ruled out. having had service in vietnam pointed the finger at agent orange which our veteran affairs has ack noledged.present meds are of little use but help with other conditions. the colder weather gives some relief. no that vet. affairs will cover cost of meds, i intend trying pregabalin pres. by specs. over 2 years ago. has similar side affects to gabbapenton. cheers &best wishes from the YETI

10

Have you seen this High-dose oral magnesium treatment of chronic, intractable erythromelalgia @ link http://www.theannals.com/content/36/2/255.abstract

also SUPPLEMENTS AND HERBS IN THE TREATMENT OF ERYTHROMELALGIA @ http://medicationsense.com/articles/2012/emsup.html

I have follow these suggestions and gotten a real impovement in my erythromelalgia.systems. I highly recommend others experiment with these suggestions. Dr. Jay Coehn has Erythromelalgia himself, and has had it since 1995.

Jeff

Fixme

11

Hi I just went to an autoimmune dermatologist at UCLA yesterday and saw Dr. Worswick. He was very nice and helpful. He finally gave me a semi diagnoses. I have know tested positive for scleroderma and he is also testing me for a connective tissue disease. He said I also have EM. So I guess the EM would be secondary. So the connective tissue disease is a little bit of sclera., a little bit of lupus with Raynauds and EM, OH BOY. I am currently taking aspirin and lyrica and he is starting me on misoprosol. He said there are other meds he is going to try with me but we will start out slow. I also take a bunch of vitamins and minerals including Omega 3s and Magnesium. I take 500 mg magnesium Oxide 3 at night and magnesium glycinate Chelate 300mg once in the morning and once at night. I am not sure what constitutes high doses I will look at the sight that was recommended. I have been having symptoms for two years and have had many docs look at me and it is so nice to finally have doctors who can help. I also have a new Rheumatologist at UCLA that is helping. YEAH!! It is so good to be able to talk with people who are going through the same thing. I also talk with Scleroderma patients. I also follow dr. Cohen's advice. I tried the 5-htp serotonin test and it hurt me right away. So I am trying feverfew but I am not sure if it is doing anything. I tried Nifedipine and it made my EM worse also Verapamil. Diltiazem did not seem to help or make it worse.

Debbie

12

Hi Debbie-- For what it's worth, my EM is secondary to "Undifferentiated connective tissue disease w/ features of lupus and scleroderma," and my rheumatologist put me on sertraline for the EM, and it has actually helped quite a lot. So if your first round of meds doesn't work, since our EM seems to be secondary to the same kinds of autoimmune disease, you may mention trying sertraline to your doctor.

Good luck!