Hi, this is my first ever post (on any discussion board!) but I have been suffering from Erythromelalgia for the last 6 months and I am struggling to get any clear advice from my own doctor. I wanted to know if there were specialists that anyone would recommend for me to see or if there are any treatments I should be trying. At the moment I am taking aspirin daily - just started a week ago, Would really love to hear any advice anyone might have. I should also say i have atrial fibrulation and recently stopped taking Warfarin (which I was told may be causing my inflamed toes!) for Dabigatran but this has no discernable effect.
My view will be different than others but here is what I suggest......
When I first had EM I wish someone had told me to try the Prednasone trial. I have head there is about an 80% chance of remission with the use of 80mg per day for 6 weeks. However it must be taken within the first 7 months of receiving EM. I tried it 2 years after EM and had good betterment but no remission.
Prednasone is a nasty drug and not to be taken lightly. The way I looked at it. The chance of remission was worth the risk. If you are on this for 6 weeks, it will take you 8-12 weeks to get off.
Oh, I am an engineer and not a doctor so I suggest you talk to your doctor. Remember,you are the boss...Not your doctor. But you must get the drug from your doctor or from Mexico or or or...... Jim
HI ANKIE, GOOD DOCS WHO KNOW ABOUT EM ARE FEW AND FAR BETWEEN IN MY EXPERIENCE HOWEVER I HAVE BEEN LUCKY ENOUGH TO FIND TWO. I am under Prof Chris Denton at the Royal Free in HaMpstead, a rheumatologist, and Dr Dave Bennett at the John Radcliffe who is a wonderful neurologist and pain specialist. I think you will need to get a referral from your GP first. Good luck!
I have had EM for 15 years + ( I have stopped counting). There is nobody who truly knows a cure or a definitive treatment. I am now part of a study with Yale University along with my niece. We now know that ours is genetic. I have been to the Mayo Clinic in Rotchester MN. I feel likle the only thing that happened there was I was given the diagnosis of EM. My Internist is the one who has been my biggest help. She thought I might have this years before the diagnosis. She keeps my spirits up and trys to do what she can.
The medication that helps me most (and I have congestivwe heart failure with a pacemaker) is Gabapentin, it is a miracle drug for me. I also take Effexor (for pain) it is typically used for depression, but does have a chemical basis to help control the nerve damage/pain. I am taking Magnesium, but i am not so sure it is much help. Look into Gabapentin (I don't know how you stand just taking aspirin). I also use Lidoderm patches on the tops of my feet which has been a tremendous help.
The most important thing I do is have hope and trust in God. He has been my salvation. I do volunteer once a week at a pro-life center. This has helped me by focusing on ohers instead of just the pain. God bless you!! Kathleenlynn
Ask your doc if you could try Toprol-XL (Lopressor, Betablok, it goes by different names, but the active substance is called "Metoprolol") its for lowering the blood pressure and i gotta say it helped me A LOT.
en.wikipedia.org/wiki/Metoprolol
from wiki: " It may also reduce blood flow to the hands and feet, causing them to feel numb and cold"
Fingers crossed, Liz
and yes, warfarin definitely could be the EM trigger.
Thank you! I have been overwhelmed by all the kind messages.Have not had a chance to read through it all yet.
Very useful to get a few names of "specialists". Even though there appears not to be any cures per se. Am I right in thinking it is more a case of managing the symptoms?
Thanks everyone , Ankie
Jayne Nelson said:
HI ANKIE, GOOD DOCS WHO KNOW ABOUT EM ARE FEW AND FAR BETWEEN IN MY EXPERIENCE HOWEVER I HAVE BEEN LUCKY ENOUGH TO FIND TWO. I am under Prof Chris Denton at the Royal Free in HaMpstead, a rheumatologist, and Dr Dave Bennett at the John Radcliffe who is a wonderful neurologist and pain specialist. I think you will need to get a referral from your GP first. Good luck!