I'd like to update you all and to say thank you for your help in prepping for my appointment on 19th December in Prof. Denton's clinic at the Royal Free.
My husband came with me for which I was immensely grateful. He was a guide for the rail journey and another pair of ears in the consultation. I was seen first by a courteous, young Clinical Research Fellow, who seemed very pleased to have my single page summary to read through. Thanks again for all help and advice received in writing such a document. He listened carefully to my answers to his questions and was evidently interested in my diffuse set of symptoms (sound familiar, anyone?). His additional history taking and physical examination of me was focused and both helped him form a pretty accurate picture of my presentation, to judge by his post-clinic letter that reached me in the New Year.
Then I was seen by a consultant called Dr Ong (Prof Denton was on leave), who talked through with me the various medical options available to treat EM. He was equally courteous and was evidently regretful that there is no single therapy that helps everyone with this wretched affliction. He spoke really fast but the gist of it was that there is a medication that he would have liked to try but he couldn't because of the high cost, the fact that it's unlicensed for treating EM and the Trust refusing to allow it. All either of us got was that this drug name begins with M! However, as he couldn't prescribe that, he suggested that I should give Sildenafil another try and discharged me from follow up in that clinic.
Before I left the department. I was sent for a very comprehensive set of blood tests and repeat capillaroscopy and cold stress testing of my hands. Those investigations took ages but were conducted by a research specialist scientist, who described himself as "just a technician". However, in the course of having those investigations, he explained the rationale for each step and gave step-by-step explanations of the tests themselves. Once he realised that I had come specifically about EM, he told me that he'd been involved in research about its management. In that couple of hours, he talked about the inter-relationship between the evil twins and clearly seemed to understand the painful reactive hyperaemia that follows warming of extremities in those who have both Raynaud's and EM. He explained why it's thought that a powerful vasodilator such as Sildenafil can help, however counter-intuitive it sounds. It was wonderful to find such an expert and to have the opportunity to discuss the conundrum with him. From what he said, I took away that although the studies haven't yet proved it definitively, it's posited that encouraging the microscopic "gateways" between larger and smaller blood vessels to open and stay open makes the gating mechanism less trigger happy...For a much more scientific explanation of the mechanism involved in causing the reactive hyperaemia, see:
(Thanks to Barnclown who first pointed me to NORD)
I saw my rheumatologist in Bristol in early January; another consultation where my having carefully prepped beforehand really helped to focus the discussion. Amongst other things, we talked about the recommendation to try Sildenafil again and she prescribed it for me; 25mg daily at first but I haven't yet had the courage to start it: my EM flared badly last time. I am procrastinating, I know but having spotted that "active or history of peptic ulceration" is one of the cautions to consider, I've emailed the consultant surgeon who diagnosed and is treating my pyloric ulcer, to ask for his advice. I will post an update in due course.
Warm wishes to you all.
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skylark15
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GOSH skylark: MANY THANKS for this extremely helpful informative detailed post: invaluable to all of us living the 24/7 all year round nightmare that is simultaneous raynauds & erythromelalgia! Am so glad your husband was with you!
I totally admire how you’re thinking trying this new treatment through (sildenafil, aka viagra i think...) which i recall folk here being prescribed for RP with some success...and i kind of recall possibly reading it can help some RP/EMers like us, but OMG would i too be procrastinating about trying it....especially as i manage early onset chronic inflammatory gastritis...
Am vvvvv much looking forward to your updates...and wishing you LUCK
I have both Raynauds and EM. They started before I was diagnosed with Systemic Sclerosis. I'm taking mycophenoate, (Celcep) but I don't think it is helping much. I'm looking for relief so I can use my hands more. Any suggestions.
Oh, painter, I'm so sorry you have such a lot to contend with. I don't have any suggestions myself but this forum is the place to find sorry and suggestions. Good luck and gentle hugs.
Thank you for your kind reply. A conundrum: that's a great way to describe this combination of afflictions. By "cyclic", do you mean the see-sawing between one condition & the other, or that they both go quiet for a while, then both recur at the same time?
Whichever, it is a tricky combination.
I still haven't started the Sildenafil because I've been dealing with various infections needing antibiotics and anti-fungal meds, which have flared up the ulcer again🙁.
This is my 2nd reply as the first one disappeared when just about finished.
Yes I mean my RP/IEM goes one then the other and sometimes together.
I can have a day of burning the next day of freezing then a day of both. Some days every few minutes it switches back and forth so much I’m exhausted from the constant change of peeling off/putting on things to fit the conditions.
I’m only taking Gabapentin 2400mg daily plus Paxil 20 mg daily.
I still have breakthrough symptoms and agony but most of the time this meds combo keeps my symptoms tolerable. The Paxil controls the agonizing heat pain and breathing problems that affect my head in the worst of my attacks. The other plus is that the Paxil gives me a peaceful calm which I sooo appreciate.
I hope you will soon get things sorted so that your meds will help you too dear.
That sounds absolutely horrendous for you. I find that switching every few minutes very trying: and it's not the sort of thing one can easily explain to someone who doesn't have RP/EM.
I used to think that I preferred the freezing cold bit but now I realise that the burning heat always follows and seems somehow to be even more intense and last longer, the longer my extremities have been freezing cold.
I take Pregabalin twice daily, in a reasonable dose, which helps me get back to sleep when I'm woken in the night by pain.
I love the idea of a peaceful calm: I strive for that!
Best wishes,
Tess
ps There are no emojis on this, my laptop but I'm too tired to see my mobile screen clearly. I'm thinking hugs and smiles.
I don’t have to worry about explaining my actions of constant on/off responses to my RP/IEM these days as I’m housebound.
In my youth I used to suffer because I was worried what others would think about me acting weird was more important than actually taking care of myself.
Then with age and attained wisdom I learned that my health was more important than others judgements.
If given a choice between the two RP/IEM I would gladly take RP you can eventually warm up. But my IEM prevents my being able to sleep in my bed because I’m so on fire I can’t sleep or cool off enough combined with my Ehlers-Danlos Syndrome sleeping in my bed is almost impossible. Very hard to function on catnaps in my office chair but it’s better than no sleep at all.
Oh yes I too find that the heat cycle progresses in intensity and duration mine with every passing month. I was 19 when it started progressing. The first bad spell had me outside in the midst of subzero temps in harsh Michigan USA 🇺🇸 Winter weather with no coat gloves hat or boots so I could cool off. I never dreamed that 49 years ago It would progress to its current state. 😳😫
I’m so glad your Pregabalin help you sleep sweetie.
It’s okay about no emojis. Not to worry about them dear.
Tess if you would like to be more private in our chats (the first 250 characters are visible on PMs to HU) let’s do emails.
Mine is
evajo1951@icloud.com
Looking forward to our next chat soon. Take care and God bless.
Hello there! I read the conversation with great interest, as I am pretty sure I have EM and a degree of RP, partiularly in winter. I'm waiting for some action from the NHS, but have been met with great indifference from a rheumatology consultant. I was refered to him for arthritis and told him about the EM symptoms. I'm waiting 6 months between appointments with no plan, and so far no treatment or investigations. (he suggested amitriptyine, but I am unwilling to take this until I have a proper diagnosis). I got a doctor's list from the EM Warriors support group, but I'm having difficulty choosing as a second opinion. (I live near London). My GP is not proactive either!
Is your treatment helpful? Please let me know. I've spent a lot of money on various creams, sprays and suppliments, but feel in need of a proper plan.
I'm sorry that you are struggling with the wretched combination of what sounds like Raynaud's and EM. My sister has terrible RP in her hands, so I recognised the symptoms but I self-diagnosed the EM, by Googling the symptoms. My then rheumatologist agreed with me but used the same phrase that I've heard many times since: "Ah. A very difficult condition to treat". Not much help!
I was advised to try Sildenafil and I took it for about 5 nights. However, the EM got much worse, with pain, heat, redness and swelling 24/7. The worst effect was that both my feet and my ankles swelled up so much that I couldn't get shoes on and walking was terribly painful. I stopped the Sildenafil and it took 2 weeks for the swelling to go down. Not a happy experience.
I take Pregabalin (150mg AM and 300mg PM), which was ostensibly for the EM and prescribed some 5 years ago. I'm not sure if it helps the pain; I still wake every night in pain. I think the Pregabalin helps me to get back to sleep, though.
I'm sorry not to be able to help you much and as I don't live in the London area, I can't advise on a Rheumatologist for a second opinion. I was referred to Professor Denton at Royal Free and had high hopes of some answers about treating EM but it turned out that his area of speciality was scleroderma. I count myself very lucky not to have that affliction.
Keep asking, Maxine. You may find just the right person.
Thank you skylark15. Its good to hear from other people, the ones who understand.
I am really sorry to hear that the Sildenafil caused such an ugly reaction. Perhaps we saw the same rheumatologist since mine said exactly the same thing! I refuse to be fobbed off again, and will be more insistent. Most "experienced" doctors are very adept at getting you out of the door when they want to, and I found myself the other side of the consulting room door in a trice!
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