I had the same problem with my very large AETNA PPO (CVS handles the insurance) refusing to cover the Ketamine /Amitriptyline compound. Vegas where I am for another month basically has extremely limited compound pharmacies.
My doctors give me some room to research for them and be involved in my Therapy direction because my EM is from excessive 5-FU chemotherapy, not the usual means. I don’t have episodes, it’s permanent 24/7.
Anyhow, I started calling out of state compound pharmacies and found AVELLA (multiple locations) in Phoenix, AZ. When they found out that CVS/AETNA wouldn’t pay for the cream and I couldn’t, they didn’t even charge me. I didn’t have to fill out forms or even talk to a specific department. They just covered it, no further questions asked.
It’s worth a try 877-■■■■ toll free. Look up their website on Google AVELLA Specialty Pharmacy. They have been fabulous! Wishing you a speedy resolution with your pain.
In terms of what I have found works best over the past 10 months has been cyproheptadine as well. I did 3 months of steroid infusions and saw benefit while doing it, but it turned out to be the cyproheptadine. Since, I have added mexiletine. Cyproheptadine seems to stop flaring from happening (I still flare during exercise but it is very tolerable and hot showers no longer produce any symptoms unless it is directly after exercise) and mexiletine reduces sensation drastically during flares and helps them subside faster if symptoms do breakthrough (I simply have to sit down for a minute or two and it clears up). I am adding feverfew to the combination later this week, substituting one of my cyproheptadine doses with it to see if the serotonin antagonist properties are more effective than cyproheptadine alone. Overall, these two medications have provided substantial relief. I also currently take a beta blocker for my high BP but feel it makes me flare worse (feet are cold most of the time) so the next step after feverfew would be a CCB to test the reactive hyperemia theory.
A systematic and rigorous trial and error approach seemed to help me find relief rather quickly compared to most and I attribute this to going to appointments with ample research papers and a strong mindset not to leave without making an attempt to get to the bottom of things.
Thank you very much for this information. I will note it in case I need it for future use. I started seeing a Dr. closer to home and currently on Lyrica and not sure how much it is helping. I don’t think a compound cream would help much now as EM is no longer localized to my feet. EM started in my feet, worked it’s way up my shins, hands and sometimes ears. My hands seems to flare more now that it’s winter. As soon as I am cooking, over using them…heck even blow drying my hair. But I feel for you…non stop flares. I do hope you find some relief soon!
Thank you for your update. I was wondering how you were getting along with the infusions and SFN diagnoses. I think possibly the Lyrica is making my hands flare more. But I started taking this during seasonal change so I will continue on till I get to the recommended dose prescribed, slowly ramping up. Maybe I can see if cyproheptadine can be added at my next appointment. My Dr. really wasn’t into prescribing mexiletine yet…he said “let’s try safer meds first” ugh… I now realize extreme temperature changes do me in no matter what season it is.
It is interesting that so many doctors don’t want to prescribe mexiletine, I have had zero issues with it whatsoever and have had some nasty side effects with literally every other medication. Another very safe thing to try is feverfew if you don’t want to try cyproheptadine. Over the past few months my sister also noticed that she has the exact same symptoms as me but has had it in her hands and feet her whole life so she is essentially numb to flaring because she has always lived with it (also has raynaud’s). It appears that there is a strong possibility that our familial EM is nearly just a migraine complex which is the type of EM that usually responds to cyproheptadine. It is worth a shot.
I’m doing some research on the connection between the electrical impulse response of EM. I don’t know if you’ve noticed because basically touching anything hurts but a trip to Home Depot before my husband passed REALLY opened my eyes.
We were down on the opposite end by the house plants and I was OK. We started towards the hardware section a few rows at a time.
The closer we got I noticed I was getting warm all over and very VERY nauseous! By the time we turned the corner with all the bolts, nails, metal plumbing parts I thought I was going to pass out. My husband said that I was much more red in my chest, and arms, and face that usual. I left immediately to get some air outside.
After feeling like I was having the world’s worst anxiety attack (only had one in my whole life), my body calmed down, my color returned to normal except my hands and feet of course.
A few minutes later I was analyzing what just happened. With my EM being from excessive 5-FU chemotherapy, I’m completely toxic and can have responses to mildew remover! So I tested it one more time (yes that’s questionable as far as my sanity ) and the exact same thing at the exact same place in the store occurred again.
Do you find door handles, holding any kind of metal, glass, or hard plastic burns your hands after a few seconds?
I’m on the West Coast and have no one to help me. My sister is in Washington and the rest of our small family is deceased.
I’m going to have to relocate to get help from a friend in Los Angeles (I’m in Vegas) but the pain, weight loss and bruising of doing all the physical work my husband used to do is really painful. I’ll be glad when this stage of my current life is over!
I hope you and your family have a wonderful holiday season!
I have noticed my hands flaring while holding a blow dryer or by the time I get to the other end of the house vacuuming but I just assumed it was the heat and excessive use. Could be electrical? Mine is intermittent throughout the day. Definitely heat, holding warm foods, etc. I had a similar experience as your Home Depot…but I was in my car in the summer with AC on in a parking lot about to go in store and just felt ill all over, heat, shakiness all over my body. I chalked it up to the hot sun coming through windows. Needless to say…I went straight home.
Be interesting to see what you document. I too hope this stage of life passes quickly for you! Please take care. I imagine the holiday season may be rough for you. May you find solace.
Michelle
There is a connection between continuous electrical stimulation or impulses and EM, I am certain of it. I have been studying sodium channelopathies (sodium blockers, etc.) and this is discussed in different articles.
I have to move to LA to be treated at Cedar Sinai but I promise this research is very important to me and I will share what I find with all of you.
You are taking feverfew? I tried to take cyproheptadine during day time. This hasn’t worked out for me with working. Really dried me out too. I will say it helped with the random hives I get.
I’m sorry for confusion. I haven’t tried feverfew but I’m considering it. The cyproheptadine really helps me but still a lot of flaring especially in evening. It does cause dryness so I’m always drinking water I guess that’s good but it is annoying but I’ll take that over flares. I take amitriptyline at night. I have also found that I seem to get some relief with aspirin. I’ve been taking 2 regular strength per day. I went off it for awhile and the flares worsened so I started again. It’s just seems some days are much better than others so again it’s just trying different things hoping something will be the formula.
I know the feeling that some days are better/worse then others. Can you tell me when your not flaring do you suffer from other neurovascular instabilities? I find I am freezing cold when others aren’t such as from the air conditioning at work or at the store. If I get too “chilled” I know it is only a matter of time before a flare.
@Alv The cyproheptadine was a near immediate response, within hours. Everything else has been very gradual (in regards to the mexiletine, propranolol, feverfew, and capsaicin cream). I am now near symptom free and have no limitations with clothing or my lifestyle. I am still taking all of my medications though and have not weaned off of anything so I am unsure whether the cyproheptadine results will hold if I cease treatment.
) and the exact same thing at the exact same place in the store occurred again.
