Wow, thanks mnp. I have gleaned as much from 5 mins in this discussion group as the last 2 yrs! Could I ask if it was Dr Bennet that wrote the prescription and what % amitriptyline it has? Does it also have ketamine? I was interested in the cream trialled by Paula Sandroni at the Mayo clinic which was a combination of 1% amitriptyline and .5% ketamine. The consultants I have contacted thus far are very nervous of ketamine, but Paoula Sandroni hypothesises that it has a complementary function to amitriptyline in closing the sodium ion channel, I tend to fall over very quickly with anything mind altering so I would be happier with a lower dose!
They just needed a prescription from my pain management specialist and cost £50.
The AmiKet is in late stage trials, but it may still be a year or longer before its available to GP's. Dr Bennett is now at Oxford and I'm being referred to him there, as Dr Hadden I saw at Kings College said he didn't know that much about EM. I've been semi-diagnosed with a form of EM by him though. I'm being prescribed some very strong steroids to try, having a nerve biopsy at my ankle and he's going to prescribe a whole bunch of drugs to start trying to see how they interact with it, starting off with Nortriptylene (in combination with Pregabalin that I'm also taking) as the side effects are apparently much less to deal with.
Good news is that after 6 sessions of acupuncture, I'm seeing some improvements :) Heat tolerance seems to be really improving, and doesn't seem attributable to the colder weather because I can now shower without a flareup and can walk a little further. Will keep people posted on my appointments and drug treatments in the coming weeks.
ajh said:
Hope you don't mind me jumping in. I'm new to on-line discussions so don'tknow the ropes. Was interested in mnp talk of amitriptyline transdermal preparation. Do you mind me asking where you got this from? Am keen to find source in UK. Wondered if it was Dr Bennett at Kings? Also would you know when AmiKet likely to finish trial? Understand that we can get it on special prescription once it is ok's by FDA?
ajh
lauraflora1 said:
Dr Bennett has recomended I try licodaine patches for the nights which are the worst time for me at the minute, I'm not due to see my GP for a couple of weeks so will ask him then. Hopefully that weill give me some relief at night.!
starsmurf said:
Hi Mike,
I have tried lidocaine patches, they would numb the area for a couple of hours and then the pain would come back worse than it was before. The lidocaine infusion is given in a hospital as a day patient.
I'm in Scotland too, you certainly don't need to travel to London, just to Dundee. I'm under Prof Jill Belch at Ninewells Hospital there, she has been a brilliant expert on EM for at least 25 years, she wrote many textbook essays on EM and Raynauds. A memeber of her team, Dr John Dick, has also got a lot of experience with EM. There is a medical physics department where they can do a lot of tests and you could have lidocaine infusions, or iloprost if your EM is of a type that would respond to that. I don't know why you had to travel all the way down to London, perhaps your neurologist just assumed there were no experts in Scotland.
I hope that helps and relieves you of the need to travel south regularly and allows you to see an EM expert whenever you need one.
mnp said:
Hi starsmurf, thanks for the info. I haven't tried lidocaine infusions (yet). Is this something that you inject yourself or have to have done at a clinic? The transdermal gel works 70% effective for about 5-6 hours I find. I'm also awaiting the AmiKet gel/cream to finish trials as this is also a transdermal based treatment. Have you tried lidocaine patches? Thats something I'd like to look at too. Currently trying Lyrica (pregabalin - type of gabapentin) on my thrid day and is making feet much much worse and nearly constantly red. I'm going to stick with it for 1 week to see if it does help in any way.
Apreciate knowledge on ketamine infusions when you get them.
Hi yep no worries :) the SP pharmacy is not licensed for Ketamine unfortunately, so I just had a 10% Amitriptylene one made up.They can do it with Gabapentin included as well, but its twice the cost as the drug is so expensive. I would like to try the ketamine one when AmiKet is finally released. For me the gel works great for around 4-5hrs but as it wears off the symptoms flare up quite badly in the regions I've applied it.
It was just my pain management consultant that prescribed it.
ajh said:
Wow, thanks mnp. I have gleaned as much from 5 mins in this discussion group as the last 2 yrs! Could I ask if it was Dr Bennet that wrote the prescription and what % amitriptyline it has? Does it also have ketamine? I was interested in the cream trialled by Paula Sandroni at the Mayo clinic which was a combination of 1% amitriptyline and .5% ketamine. The consultants I have contacted thus far are very nervous of ketamine, but Paoula Sandroni hypothesises that it has a complementary function to amitriptyline in closing the sodium ion channel, I tend to fall over very quickly with anything mind altering so I would be happier with a lower dose!
That's really interesting. Annoying that it flares when the cream has worn off. I started with capsaicin cream at 0.25% only, which I think did 'clear out' the nerve endings so the erythema did not get too bad a grip but I found it too much at 0.75%. Then I tried doxepin cream which is close to amitriptyline but on general prescription. However, I ended up really drowsy and apathetic. Then I had a huge flare in the one week of hot weather in the summer and have only just got my legs back to a reasonable condition with mometasone (a cortico-steroid), antibiotic cream from the GP to prevent infection in the cracks in the skin, and now, with a new pain specialist, Dr Andrew Nicolau, some systemic Amitriptyline (10mg). Actually I think this combination is helping but would prefer Amitriptyline to be topical.
mnp do you mind me asking which pain specialist wrote the prescription for the SP Pharmacy?
kind regards
ajh
mnp said:
Hi yep no worries :) the SP pharmacy is not licensed for Ketamine unfortunately, so I just had a 10% Amitriptylene one made up.They can do it with Gabapentin included as well, but its twice the cost as the drug is so expensive. I would like to try the ketamine one when AmiKet is finally released. For me the gel works great for around 4-5hrs but as it wears off the symptoms flare up quite badly in the regions I've applied it.
It was just my pain management consultant that prescribed it.
ajh said:
Wow, thanks mnp. I have gleaned as much from 5 mins in this discussion group as the last 2 yrs! Could I ask if it was Dr Bennet that wrote the prescription and what % amitriptyline it has? Does it also have ketamine? I was interested in the cream trialled by Paula Sandroni at the Mayo clinic which was a combination of 1% amitriptyline and .5% ketamine. The consultants I have contacted thus far are very nervous of ketamine, but Paoula Sandroni hypothesises that it has a complementary function to amitriptyline in closing the sodium ion channel, I tend to fall over very quickly with anything mind altering so I would be happier with a lower dose!
Hi ajh - do you mind my asking about the mometasone? Has it helped with the EM, or is it more about improving the condition of your skin? I was trying a low-strength steroid cream last summer, but it didn't do much about flaring. Maybe I should try something stronger.
Thanks - FrancesE
ajh said:
Hi mnp
That's really interesting. Annoying that it flares when the cream has worn off. I started with capsaicin cream at 0.25% only, which I think did 'clear out' the nerve endings so the erythema did not get too bad a grip but I found it too much at 0.75%. Then I tried doxepin cream which is close to amitriptyline but on general prescription. However, I ended up really drowsy and apathetic. Then I had a huge flare in the one week of hot weather in the summer and have only just got my legs back to a reasonable condition with mometasone (a cortico-steroid), antibiotic cream from the GP to prevent infection in the cracks in the skin, and now, with a new pain specialist, Dr Andrew Nicolau, some systemic Amitriptyline (10mg). Actually I think this combination is helping but would prefer Amitriptyline to be topical.
mnp do you mind me asking which pain specialist wrote the prescription for the SP Pharmacy?
kind regards
ajh
mnp said:
Hi yep no worries :) the SP pharmacy is not licensed for Ketamine unfortunately, so I just had a 10% Amitriptylene one made up.They can do it with Gabapentin included as well, but its twice the cost as the drug is so expensive. I would like to try the ketamine one when AmiKet is finally released. For me the gel works great for around 4-5hrs but as it wears off the symptoms flare up quite badly in the regions I've applied it.
It was just my pain management consultant that prescribed it.
ajh said:
Wow, thanks mnp. I have gleaned as much from 5 mins in this discussion group as the last 2 yrs! Could I ask if it was Dr Bennet that wrote the prescription and what % amitriptyline it has? Does it also have ketamine? I was interested in the cream trialled by Paula Sandroni at the Mayo clinic which was a combination of 1% amitriptyline and .5% ketamine. The consultants I have contacted thus far are very nervous of ketamine, but Paoula Sandroni hypothesises that it has a complementary function to amitriptyline in closing the sodium ion channel, I tend to fall over very quickly with anything mind altering so I would be happier with a lower dose!
This is what my dermatologist said 'mometasone is anti-inlammatory and addresses the inflammatory consequences of erythromelalgia; it does not address the erythromelalgia itself. With prolonged usage it could thin your skin. However it is less prone to cause thinning than Dermovate'. So, no, it doesn't stop flaring but it does seem to keep the skin in better condition. The leaflet says not to put it on open wounds/cuts etc. I also forgot to mention that the GP gave me a sort of barrier cream (emulsifying ointment BP) as well as antibacterial cream. None of this goes to the heart of the erythromelalgia but did help my skin to recover
good luck
ajh
FrancesE said:
Hi ajh - do you mind my asking about the mometasone? Has it helped with the EM, or is it more about improving the condition of your skin? I was trying a low-strength steroid cream last summer, but it didn't do much about flaring. Maybe I should try something stronger.
Thanks - FrancesE
ajh said:
Hi mnp
That's really interesting. Annoying that it flares when the cream has worn off. I started with capsaicin cream at 0.25% only, which I think did 'clear out' the nerve endings so the erythema did not get too bad a grip but I found it too much at 0.75%. Then I tried doxepin cream which is close to amitriptyline but on general prescription. However, I ended up really drowsy and apathetic. Then I had a huge flare in the one week of hot weather in the summer and have only just got my legs back to a reasonable condition with mometasone (a cortico-steroid), antibiotic cream from the GP to prevent infection in the cracks in the skin, and now, with a new pain specialist, Dr Andrew Nicolau, some systemic Amitriptyline (10mg). Actually I think this combination is helping but would prefer Amitriptyline to be topical.
mnp do you mind me asking which pain specialist wrote the prescription for the SP Pharmacy?
kind regards
ajh
mnp said:
Hi yep no worries :) the SP pharmacy is not licensed for Ketamine unfortunately, so I just had a 10% Amitriptylene one made up.They can do it with Gabapentin included as well, but its twice the cost as the drug is so expensive. I would like to try the ketamine one when AmiKet is finally released. For me the gel works great for around 4-5hrs but as it wears off the symptoms flare up quite badly in the regions I've applied it.
It was just my pain management consultant that prescribed it.
ajh said:
Wow, thanks mnp. I have gleaned as much from 5 mins in this discussion group as the last 2 yrs! Could I ask if it was Dr Bennet that wrote the prescription and what % amitriptyline it has? Does it also have ketamine? I was interested in the cream trialled by Paula Sandroni at the Mayo clinic which was a combination of 1% amitriptyline and .5% ketamine. The consultants I have contacted thus far are very nervous of ketamine, but Paoula Sandroni hypothesises that it has a complementary function to amitriptyline in closing the sodium ion channel, I tend to fall over very quickly with anything mind altering so I would be happier with a lower dose!
Hi mnp - just caught up with this section of the discussion which I somehow missed before, and smiled as you seem to have been going the same route as me including the clinic in the Netherlands. Only thing is when I asked my dermatologist for a prescription he would not do it admitting fear of legal liability. Hence my interest in someone willing to prescribe.
all best
ajh
mnp said:
Yes, I saw the same clip too and then emailed him directly :) As for the topical gel, I sourced several academic studies trialing the use of them (albeit very small samples) but showed incredible results. Pharmacies all over the US/CA compound these gels as a matter of course, but are almost impossible to find in the UK/EU (I've been researching for weeks now). There is a clinic in the Netherlands called www.neuropathie.nu and this one in London I've found (http://www.specialist-pharmacy.com/) import the crucial transdermal base from the USA. The regular pharmacy route costs £300-500 for 100g, but the SP in London its £45 for 100gr - they can also do a gabapentin/amitriptylene mixture - but costs twice as much. Hopefully hopefully this will help as I can't stand taking the pills. The NHS is trying to fastrack a product called AmiKet (amitriptylene and ketamine PLO gel) but its still in trials for now. So specialist compounding is the only option for now. Hope this knowledge helps :) Best wishes, Mike
Hi ajh, glad it wasn't just me pursuing those options! The clinic in the netherlands told me they just needed a prescription from my pain management specialist [PMS], but the Special Pharmacy were a little cheaper and more local. I wrote a waiver for my PMS saying that I take full responsibility for any adverse side effects, then he was happy to do it. You'd need to get your PMS to sign it off as mine only did it because he was seeing and treating me directly through 6 sympathetic nerve blocks at the time. I'm sure if you sign a similar waiver for your PMS he/she will sign you an 'unlicensed special' script too.
I recommend rubber gloves btw!
ajh said:
Hi mnp - just caught up with this section of the discussion which I somehow missed before, and smiled as you seem to have been going the same route as me including the clinic in the Netherlands. Only thing is when I asked my dermatologist for a prescription he would not do it admitting fear of legal liability. Hence my interest in someone willing to prescribe.
all best
ajh
mnp said:
Yes, I saw the same clip too and then emailed him directly :) As for the topical gel, I sourced several academic studies trialing the use of them (albeit very small samples) but showed incredible results. Pharmacies all over the US/CA compound these gels as a matter of course, but are almost impossible to find in the UK/EU (I've been researching for weeks now). There is a clinic in the Netherlands called www.neuropathie.nu and this one in London I've found (http://www.specialist-pharmacy.com/) import the crucial transdermal base from the USA. The regular pharmacy route costs £300-500 for 100g, but the SP in London its £45 for 100gr - they can also do a gabapentin/amitriptylene mixture - but costs twice as much. Hopefully hopefully this will help as I can't stand taking the pills. The NHS is trying to fastrack a product called AmiKet (amitriptylene and ketamine PLO gel) but its still in trials for now. So specialist compounding is the only option for now. Hope this knowledge helps :) Best wishes, Mike
I agree about treating the vasodilation and not the pain. I'm being prescribed methyiprednisolone (steroids) 500mg/day for 5 days; notriptylene 10mg; carbamazepine/duloxetine; lidocaine patches and capsicum creams. I'd be keen to hear other people's experiences of these medications. Dr Anand at hammersmith hopsital is also another option for something called CHEPS testing.
I felt very sad to hear of your situation and the huge programme of things you have tried. I hesitate to offer anything as I have no medical understanding. However, something simple may be of use - David Bennetts current email and address:
David Bennett [david.bennett@ndcn.ox.ac.uk]
Dr David Bennett,
Level 6,
West wing,
John Radcliffe Hospital,
Headley Way,
Oxford,
OX3 9DU
I also include a website of Dr Jay S. Cohen in the States. From reading some discussion group comments I sense that a lot of people here have visited it. He has got back to an active life by systematically trying one thing at a time to see what works and what doesn't and he lists some options and how they work medically. www.medicationsense.com/articles/2012/emtreatment
It took me some time to get to grips with the article, but I like it because he proceeds logically, and if the usual things don't work he recommends trying something opposite.
I wish you well, it sounds miserable at present - good luck!
By the way thanks to mnp for his helpful info re the Specialist Pharmacy. My pain management specialist has prescribed me amitriptyline gel and I am waiting for it to arrive! I am going to continue a low systemic dose (5mg) as well as apply the cream topically as he explained the sodium ion channel is faulty in every cell of the body, just more faulty in the legs. My experience of capsaicin was not too bad for clearing the skin of erythema. It worked better for me at low dose 0.025%, the 0.075% was too strong for me. It did not fully clear the skin but kept it at bay. The flares kept coming I guess because it is not directed at the original source of the problem.
mnp said:
Hi Elizabeth,
Sorry to hear that you've tried so many treatments already without the outcomes you're searching for. I was told by Dr Hadden at King's that he had moved to Oxford (profile here: http://www.neuroscience.ox.ac.uk/about/news/new-member-of-staff-pro...). I'm being referred to him there now.
I agree about treating the vasodilation and not the pain. I'm being prescribed methyiprednisolone (steroids) 500mg/day for 5 days; notriptylene 10mg; carbamazepine/duloxetine; lidocaine patches and capsicum creams. I'd be keen to hear other people's experiences of these medications. Dr Anand at hammersmith hopsital is also another option for something called CHEPS testing.
Meant to say that I have been told that if the EM is secondary to something else (in my case possibly rheumatoid arthritis) then it is important to deal with the original problem. I expect you know that anyway
Cheers, ajh
ajh said:
Hi Elizabeth
I felt very sad to hear of your situation and the huge programme of things you have tried. I hesitate to offer anything as I have no medical understanding. However, something simple may be of use - David Bennetts current email and address:
David Bennett [david.bennett@ndcn.ox.ac.uk]
Dr David Bennett,
Level 6,
West wing,
John Radcliffe Hospital,
Headley Way,
Oxford,
OX3 9DU
I also include a website of Dr Jay S. Cohen in the States. From reading some discussion group comments I sense that a lot of people here have visited it. He has got back to an active life by systematically trying one thing at a time to see what works and what doesn't and he lists some options and how they work medically. www.medicationsense.com/articles/2012/emtreatment
It took me some time to get to grips with the article, but I like it because he proceeds logically, and if the usual things don't work he recommends trying something opposite.
I wish you well, it sounds miserable at present - good luck!
By the way thanks to mnp for his helpful info re the Specialist Pharmacy. My pain management specialist has prescribed me amitriptyline gel and I am waiting for it to arrive! I am going to continue a low systemic dose (5mg) as well as apply the cream topically as he explained the sodium ion channel is faulty in every cell of the body, just more faulty in the legs. My experience of capsaicin was not too bad for clearing the skin of erythema. It worked better for me at low dose 0.025%, the 0.075% was too strong for me. It did not fully clear the skin but kept it at bay. The flares kept coming I guess because it is not directed at the original source of the problem.
mnp said:
Hi Elizabeth,
Sorry to hear that you've tried so many treatments already without the outcomes you're searching for. I was told by Dr Hadden at King's that he had moved to Oxford (profile here: http://www.neuroscience.ox.ac.uk/about/news/new-member-of-staff-pro...). I'm being referred to him there now.
I agree about treating the vasodilation and not the pain. I'm being prescribed methyiprednisolone (steroids) 500mg/day for 5 days; notriptylene 10mg; carbamazepine/duloxetine; lidocaine patches and capsicum creams. I'd be keen to hear other people's experiences of these medications. Dr Anand at hammersmith hopsital is also another option for something called CHEPS testing.
Hi Elizabeth, Glad you had some success contacting Dr Hadden. I've just started taking Nortriptylene too (4 days ago), but it will take 1-2 weeks for any benefits to emerge. When I started taking Pregabalin and Amitriptylene my flareups got worse and generally more sensitive, but I've found the more you persevere the better the symptoms become. I'm experiencing more similar erythema/redness emerging in my hands since taking Nortriptylene and more generally sensitive to vasodilation in my feet, but I will see how it goes over 14 days or so.
For the transdermal gel, it really works to prevent vasodilation for 4-5 hours, then it wears off and gets very aggravated easily, so its not an everyday, all day fix unfortunately.
I'm finding that acupuncture has been most effective so far. after 6 sessions the heat threshold has severely risen (i.e. less sensitive to heat flareups). I still get flareups from chemicals (food, drinks etc) as well as physical - through walking (but not cycling exertion interestingly), but I can now shower and wear slippers without flareups - small but significant positive steps :)
Hi mnp, I am able to do spin classes at the gym and cycle during summer months outside without flares too… I’m not sure why cycling is ok for me and other exercise or even walking flares… I used to flare when I first started cycling but pushed through and the flares got less and less the more I went…
Hi Laura, glad its not just me then! Its very odd, if I hoover for 15mins that always causes flareups, but cycling not, no matter how hard I push.
I've been going through it the last 20 months (with a very recent semi-diagnosis) and can say that symptoms are definitely improving, irrespective of drug treatments that just seem to numb symptoms slightly, not speeding up nerve repair. Last year I couldn't cycle winter or summer without flareups, now I can. Although I do get terrible chillblains now if I cycle when its too cold. It's not Reynauld's but just seems to be bad circulation which is rather ironic! Not sure if anyone else suffers with them in winter?
I would say its best for me at least to be as active as physically possible without causing flareups, eating well, trying different medications, no booze and acupuncture. Just hope in time it will all settle down (I'd say anywhere between 2-3 years more at this rate for me before it shouldn't impact on daily life that much). Well, here's hoping at least.
I hardly go out in the winter because I suffer severe pain from the cold then go straight into an em flare as soon as I start to warm up… I just bought a pair of snow/ski boos to wear at work to see if that helps I’d not it will mean somebody covering my 2 half days I work outside… Last year I was unable to go outside hardly ever… Apparel purple with secondary em can also suffer in the cold too… I’m one of them…
Hi mnp I read with interest that you are having acupuncture. Whereabouts in your body do they insert the needles and did you find it difficult to find an acupuncturist who knew how to treat your EM? I have been considering this form of treatment but am concerned it could make my symptoms worse.
mnp said:
Hi Elizabeth, Glad you had some success contacting Dr Hadden. I’ve just started taking Nortriptylene too (4 days ago), but it will take 1-2 weeks for any benefits to emerge. When I started taking Pregabalin and Amitriptylene my flareups got worse and generally more sensitive, but I’ve found the more you persevere the better the symptoms become. I’m experiencing more similar erythema/redness emerging in my hands since taking Nortriptylene and more generally sensitive to vasodilation in my feet, but I will see how it goes over 14 days or so.
For the transdermal gel, it really works to prevent vasodilation for 4-5 hours, then it wears off and gets very aggravated easily, so its not an everyday, all day fix unfortunately.
I’m finding that acupuncture has been most effective so far. after 6 sessions the heat threshold has severely risen (i.e. less sensitive to heat flareups). I still get flareups from chemicals (food, drinks etc) as well as physical - through walking (but not cycling exertion interestingly), but I can now shower and wear slippers without flareups - small but significant positive steps
Hi Frances, they put needles all over to the heat releasing points in various places, elbows, knee, ankle, toes, forefoot etc. I would say the main difference is that acupuncture takes a systemic, not just symptomatic mode to treatment. In my case general excess heat generation despite being otherwise fit and healthy. In treating that, my symptoms have improved. If you're in the UK check out http://www.acupuncture.org.uk/ to find your nearest. I spoke to several first to find one that had heard of EM (none did) but they had heard of CRPS. If they're any good they'll read up a bit on it in the journals/online. Hope that helps :)
Thanks mnp, unfortunately I am not in the UK. I live in Western Australia. I will investigate accunpucturists in my area and hopefully find someone suitable. I really would like to treat my EM with out having to swallow a lot of chemicals and am interested in learning about alternative natural products. I saw my Rheumatologist today and she wants me to try taking a magnesium tablet daily for six weeks along with the gabapentin and endep that I am currently taking to see if that helps my symptoms.
mnp said:
Hi Frances, they put needles all over to the heat releasing points in various places, elbows, knee, ankle, toes, forefoot etc. I would say the main difference is that acupuncture takes a systemic, not just symptomatic mode to treatment. In my case general excess heat generation despite being otherwise fit and healthy. In treating that, my symptoms have improved. If you’re in the UK check out http://www.acupuncture.org.uk/ to find your nearest. I spoke to several first to find one that had heard of EM (none did) but they had heard of CRPS. If they’re any good they’ll read up a bit on it in the journals/online. Hope that helps
Hello everyone, this is a great discussion - really good to hear about all the different treatments, different people's experiences. I'm curious about steroids.... bits of my EM look so much like eczema, I keep thinking steroids might help. I tried acupuncture for some weeks but unfortunately it didn't seem to help with the EM/general overheating and did set off quite a lot of pain immediately after the treatments - the acupuncturist warned me this might happen, but it lasted for several days. A different acupuncturist might have had better results though. I also found Nortriptylene caused a lot more vasodilation, and gave it up after several months.
I am a big fan of exercise though, and walk every morning even though it makes my feet flare. My EM is worst in my knee, and that doesn't react to walking unless it's a hot day. It just helps to get out and do something. I feel really bad for you Lauraflora, not being able to go out without triggering flares - hope the boots help.
This sound really horrendous, and I can only guess how you feel to have reached such a sense of hopelessness. I confess that I have had fleeting thoughts of suicide, and yet somehow here I am, yesterday fed up, and today, mentally brighter, tomorrow despairing again. I imagine it also makes it worse sometimes to read our discussion comments and to feel others are getting a measure of relief in some areas.
I can understand your reluctance to go through the whole process all over again, yet Dr Bennett might help, if only because consultants do feel they have to do better than the previous consultant!. You also have the ketamine infusions that you mentioned to try. The AmiKet topical cream will eventually hit the market, and that may be worth a go. Dr Stephen Waxmans genetic research at Yale may produce something. It is all 'what ifs' I realise, but if you have dark thoughts it may be an idea to postpone any action, not getting into a conflict about it - 'I shouldn't - I must' etc, but saying 'I may have to but I going to postpone it for now'. I think being really clear about what you are thinking to your consultant is important too. There may be things up their sleeve, which you need now.
I wish you the very best through all this
Warm wishes
Anne
elizabeth said:
I reduced my nortriptyline dose to quarter of a tablet today, and still getting really bad tachycardia and horrendous flushing. The flushing and pain have also appeared in new areas, e.g. my tongue and inside of nose, plus I flush immediately on sitting or lying down because of the effect of the increased cardiac output from the tachycardia on my dilated capillaries.
Things are absolutely terrible here. I can't tolerate any heating on even in this weather, have to have two fans on me at night and still the flushing starts in the early hours, the only way to get it to go down is to walk for about an hour. I have to do this every couple of hours through the day, it's exhausting me and worsening the arthritis pain in my hips. I simply can't go on like this.
Does Dr Bennett use any drugs other than the usual combinations of tricyclics/anticonvulstants/SNRIs/lidocaine patches etc to treat this condition? My GP has agreed to refer me to him but I'm not really sure what the point is if all he can suggest is all this stuff again. All of these drugs extremely marginal on pain relief, are completely ineffective at stopping the flushing and have intolerable side effects, particularly if you have severe autonomic problems. I feel like telling them at King's that unless they can guarantee me that I can live without pain, without ongoing facial disfigurement from the burns, be able to lie down in comfort and can regain the ability to tolerate normal amounts of heat so that I can socialise normally, go home to stay with my mother, or even be able to use the rooms on the south side of my house again, I'll just take an overdose I've been trying to avoid so desperately now and limit my suffering. I've already taken more of this torture than I can bear.
The boots were fab, I mamaqged to go out for 2 hours and my feet were ok for the first hour and half then slight pain but nothing like they used to be. They are flaring badly now tho, not sure if this is because I did more and went out in the cold or whether I was just due a bad one..!
On the Dr Bennett convo, I saw him in the summer, had a good visit with loads of tests, genetic, biopsy, mri scans, bloods etc. The only results I have recieved are the genetic testing but I saw hime when he was getting ready to move hospitals. One thing he did say tho is he deals with primary not secondary EM and as long as I have a good pain management dr then he wouldn't see me again.! Do you have primary or secondary, or unsure...??
FrancesE said:
Hello everyone, this is a great discussion - really good to hear about all the different treatments, different people's experiences. I'm curious about steroids.... bits of my EM look so much like eczema, I keep thinking steroids might help. I tried acupuncture for some weeks but unfortunately it didn't seem to help with the EM/general overheating and did set off quite a lot of pain immediately after the treatments - the acupuncturist warned me this might happen, but it lasted for several days. A different acupuncturist might have had better results though. I also found Nortriptylene caused a lot more vasodilation, and gave it up after several months.
I am a big fan of exercise though, and walk every morning even though it makes my feet flare. My EM is worst in my knee, and that doesn't react to walking unless it's a hot day. It just helps to get out and do something. I feel really bad for you Lauraflora, not being able to go out without triggering flares - hope the boots help.
