1st appointment at Royal Free Hospital - London - 13th September 2012

I attended The Rheumatology Department at the Royal Free after being referred by my own GP. Wasn't sure what the outcome would be but I was very pleasantly surprised at the efficiency and courtesy shown to me throughout the several hours spent there. Most importantly, the doctors I saw actually listened to what I had to say about my experience with EM. My feet had been flaring since leaving home at 10.30am and continued all through the day until getting home at 7.30pm, so at least they could see the discomfort I was in. Nor did they bat an eyelid at my wearing an old adapted pair of soft slippers which were only on my feet when I had to walk anywhere.

I was never kept waiting more that 10 minutes before being seen by anyone and everyone was very helpful.

After the usual weight and urine specimen were done I was sent for Thermography testing done by Dr Kevin Howell. This showed one foot as being very hot at 35c and the other being much colder at 23c. Both were feeling as if they were on fire with all the accompanying tingling pain etc., and the doctor said he had never seen someone exhibiting both EM and Raynaud symptoms at the same time. This was the first time I had had Raynauds mentioned regarding my symptoms. I had experienced 'cold' flares before but never gave it a thought knowing how weird this EM can be.

I also had the small capillaries in my fingers looked at under high magnification which showed that everything was as it should be. This apparently meant that my toe capillaries would be ok too and suggested that my EM was primary and not secondary.

After this I went in to see a Dr Derret-Smith who took a full medical history, did blood pressure and sounded my back and chest (I am a smoker). She obviously said smoking was not a good idea but didn't make me feel like a criminal. At no time did I feel rushed like sometimes happens at medical appointments be they with a GP or otherwise. She checked the notes I had taken with me and noted that I was well informed concerning EM. I told her about this website and how helpful it is for people with rare conditions. Everything was noted and put on to the computer records and then I was sent for blood tests and lunch before going back to see her again. In the meantime she must have collated all my information and been in to see Professor Chris Denton who is the head honcho of Rheumatology.

When I got back from lunch Dr. Derrett-Smith then told me her plan of action for me. First I was to start on a course of Losartan which began at one 25mg tablet daily for two weeks then 2 tablets daily. At the end of the 1st fortnight I had to have a blood test for kidney function. At this point Professor Denton came in and confirmed the diagnosis of EM and that he was recommending I have a course of Iloprost infusions in the not too distant future. I can't remember if Raynauds was mentioned too at this point. Then I was sent to see a nurse who gave me advice on taking vitamin supplements (C + A) and Gamolenic Acid which is very expensive to buy but can be found in other supplements. The nurse also gave me some dressings for the ulcer on my heel.

After this I was free to go home and await the follow up letter which arrived some 20 days later.

The letter which was also sent to my GP, stated that my legs were oedematous to mid calf and that I have toe nail dystropohy (they are coming away from the flesh).

Baseline thermography suggested Raynauds in one foot and EM in the other. I do actually experience both hot and cold flares in both feet at times.

My immunology was negative, vitamin D levels very low and I am iron deficient without anaemia apparently. I have a high platelet count with a few macrothrombocytes on the blood film.

I have been referred, on Dr Derrett -Smith's advice to my GP, that I see a haematologist at my local hospital and also take a high dose (20,000IU) cholecalciferol capsule 3 times a week for 6 weeks and then 1 weekly thereafter. I can also add 75mg aspirin into the mix if I wish but so far I haven't done this. My appointment at haematology will be on 2nd November and I am taking the high dose vitamin D as advised.

I have a follow up appointment in March 2013 and will be seen on the ward at the Royal Free for the Iloprost before then.

There, I think that is all, and for those who might read this I hope it hasn't made your eyes glaze over.

I shall do a blog later regarding the effects of the Losartan that I was advised to take.

For those of you having trouble getting a diagnosis from your GP or who doesn't believe the condition exists, tell them about Professor Chris Denton at the Royal Free or Dr. Dave Bennet at Kings College Hospital who are both knowledgeable about the of EM.

Thanks for such a comprehensive report on your visit to the Royal Free. It is really helpful. My GP won’t refer me until the dermatologist has finished sending me here there and everywhere, to no avail. Next appointment is in November and I really plan to push for this referral after reading your post.

Thanks for the very detailed report. What is the the losartan for? It’s typically for blood pressure. What is its role in EM? What did they recommend for the pain? So glad you are getting help!

that was so helpful' i have an appointment with prof chris denton on 1st nov, its good to know that there are some specialists willing to listen and help.

I have seen Kevin Howell but am awaiting an appointment to see professor Denton as i have both raynauds and em

Thanks also for all the info, very useful. I'm due my first appointment at Kings College Hospital to see Dr Bennett and will also post up the results.


Excellent post. Very concise and full of great information. I am going to send a copy to my Rheumatologist if that is Ok with you?! I experience the hot and cold at the same time as well. It happens in both my hands and feet. It is very eradic in that the the right or left foot can be cold and the oppposite hot and vice versa. The same thing happens with my hands. It has been flaring quite a bit lately ..sometimes it feels as if it is constant and never fully stops. Did they happen to tell you what the normal temperature of the foot is supposed to be? I often wish I had a device to measure skin temperature. I wonder if the thermometers they use on foreheads for chiildren would be accurate enough.

Thank you for such a wonderful post and please keep us all informed about the effects of the medication!


Thanks for the detailed report. Does anyone know of a doctor in Canada of the USA that would have the knowledge of the doctors you mentioned.