# Uk specialists **URL:** \ **Category:** General\ **Created:** [January 26, 2013, 3:13pm UTC](https://forum.livingwitherythromelalgia.org/t/uk-specialists/344 "2013-01-26T15:13:40Z")\ **Posts on this page:** 8\ **Page:** 1
**Author:** ![Ankie](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/ankie/32/385_2.png) [@Ankie](https://forum.livingwitherythromelalgia.org/u/Ankie)\ **Post date:** [January 26, 2013, 3:13pm UTC](https://forum.livingwitherythromelalgia.org/t/uk-specialists/344/1 "2013-01-26T15:13:40Z")
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. Thank you in advance for any advice anyone has. ---
**Author:** ![Jim\_Weed\_Alaska](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/jim_weed_alaska/32/72_2.png) [@Jim\_Weed\_Alaska](https://forum.livingwitherythromelalgia.org/u/Jim_Weed_Alaska)\ **Post date:** [January 26, 2013, 5:31pm UTC](https://forum.livingwitherythromelalgia.org/t/uk-specialists/344/2 "2013-01-26T17:31:35Z")
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 ---
**Author:** ![Jayne\_N](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/jayne_n/32/10_2.png) [@Jayne\_N](https://forum.livingwitherythromelalgia.org/u/Jayne_N)\ **Post date:** [January 26, 2013, 6:13pm UTC](https://forum.livingwitherythromelalgia.org/t/uk-specialists/344/3 "2013-01-26T18:13:10Z")
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! ---
**Author:** ![Kathleenlynn](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/kathleenlynn/32/169_2.png) [@Kathleenlynn](https://forum.livingwitherythromelalgia.org/u/Kathleenlynn)\ **Post date:** [January 26, 2013, 8:56pm UTC](https://forum.livingwitherythromelalgia.org/t/uk-specialists/344/4 "2013-01-26T20:56:01Z")
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 ---
**Author:** ![liz2](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/liz2/32/353_2.png) [@liz2](https://forum.livingwitherythromelalgia.org/u/liz2)\ **Post date:** [January 26, 2013, 10:09pm UTC](https://forum.livingwitherythromelalgia.org/t/uk-specialists/344/5 "2013-01-26T22:09:37Z")
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. ---
**Author:** ![ajh](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/ajh/32/355_2.png) [@ajh](https://forum.livingwitherythromelalgia.org/u/ajh)\ **Post date:** [January 27, 2013, 11:13am UTC](https://forum.livingwitherythromelalgia.org/t/uk-specialists/344/6 "2013-01-27T11:13:54Z")
Hi Ankie You might like to ask your doctor about Mexiletine which is an anti-arythmic drug which hits the faulty sodium channel. Good luck ajh ---
**Author:** ![Ankie](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/ankie/32/385_2.png) [@Ankie](https://forum.livingwitherythromelalgia.org/u/Ankie)\ **Post date:** [January 27, 2013, 11:42am UTC](https://forum.livingwitherythromelalgia.org/t/uk-specialists/344/7 "2013-01-27T11:42:09Z")
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! ---
**Author:** ![In\_pain](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/in_pain/32/273_2.png) [@In\_pain](https://forum.livingwitherythromelalgia.org/u/In_pain)\ **Post date:** [January 28, 2013, 4:34pm UTC](https://forum.livingwitherythromelalgia.org/t/uk-specialists/344/8 "2013-01-28T16:34:22Z")
Professor chris denton at the royal free london