I have Lupus, severe Raynaud's and a long history of secondary erythromelalgia of my feet. It has got steadily worse over the last few years and the persistent effects are now deemed to be ischaemia reperfusion injury.
It is much worse when the weather is hot or I have been walking any distance. My feet are hot, red and swollen (sometimes up to my calves) and the tingling and burning are so painful that I could (and sometimes do) scream. I often cannot bear to wear any closed shoes, so I walk around barefoot most of the time. This has meant that it's sometimes impossible to leave the house. My sleep is badly disrupted. I find it difficult to get to sleep and am always awoken after an hour by the unbearable pain, burning and tingling in my feet.
I take 450mg Pregabalin over 24 hours. as well as 50mg Losartan (for Raynaud's),180mg Fexofenadine at night, and 200mg Hydroxychloroquine twice daily. I started taking Sildenafil 25mg every night a couple of months ago and have recently increased that to 25mg twice daily. I understand that the dose can be significantly increased; even though it's off licence for severe Raynaud's, it is quite frequently prescribed and has been put on the amber list now for GP prescribing. I haven't noticed any benefit on my current dose and I've been advised tby my rheumatologist to increase it slowly to see if that gives any noticeable benefit.
I was referred to the Pain Clinic and last week, the consultant outlined several options open to me and invited me to contact her once I'd decided which one I would like to try., assuming that Sildenafil wasn't effective, even at a much higher dose.
The options included Lignocaine infusions and I'd like to know if anyone has found any lasting benefit from these?
Another option and I presume this would be if the Lignocaine didn't help, is a sympathetic nerve block, using pulsed radiofrequency ablation. This sounds very daunting: my feet may be terribly painful most of the time but I'd be wary of having no feeling in them at all...Again, has anyone been forced to go down this route and has it got rid of the terrible pain of the ischaemia reperfusion?
I'd be very grateful to hear from anyone who has tried these treatments. Thank you.
Tess
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skylark15
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Hello again! Glad you’ve posted...Hope you get some helpful answers. I’ve found more experienced ischemia reperfusion injury patients here on the the HU SRUK forum than on any of my other support group org forums
Not much for me to add to what I’ve recently shared already about my treatment for severe ischemia reperfusion injury...except to say that today I have my 3rd monthly review with our CTD specialist nurse re how I’m managing on incrementally increased doses of sildenafil (we are following my rheumatology clinic’s NHS Sildenafil protocol) and am planning to ask for another 25mg dose increase (up to 150mg daily) because 125mg isn’t helping enough at these higher temps we’re having.
Am feeling very sobered by the degree of permanently severe injury my version of simultaneous raynauds/erythromelalgia ischemia seems to have inflicted. I guess this dreadfulness of severity is due to my Raynaud’s being childhood onset & progressively severe + my age (67) + my Erythromelalgia starting in the 1990s & progressively worsening alongside the raynauds....+ these both going without targeted systemic treatment other than self- help techniques & my lupus meds until 4 or so years when my rheumy put me on low dose losartan & my podiatrists started to try me on urea topicals, & my dermy gave me topicals like Dermacool etc etc
Anyway, after 3 months on sildenafil for this, am now edging into feeling so very sobered cause am beginning to face up to the nightmare of having to live longterm bearing the terrible pain that my ischemia injury is causing. Yes sildenafil IS taking the edge off this pain, but the pain is still a horrific 24/7 thing & blights my life. So I’m very interested in the treatments that’ve been proposed by your pain clinic
Am hugely feeling for you & everyone else living with this ghastly affliction & hope you get helpful replies to your post 🍀❤️🍀❤️ Coco
Thanks for your response to my post. Your contributions are always thought-provoking and helpful.
You've probably seen the other responses so far: I'm learning lots and I feel reassured that the people on this forum (and SRUK) share their individual experiences for everyone's benefit: it's heart-warming.
I hope having a team of consultants and specialist practitioners all working together brings some comfort to you, even though the damaging chronic effects of this wretched combination of condition are truly sobering. I feel for you.
flying solo on the dosage of Sildenafil as basically, I asked for a higher dose but that only took me to twice daily and I am not under the care of a specialist nurse. I will up-titrate the Sildenafil gradually and see whether that alleviates the pain at all. I haven't noticed any sustained improvement on 25mg twice daily. The only thing that makes any difference is when the weather's a bit cooler.
I am sure that I'll ask the pain clinic consultant for Lignocaine infusions if Sildenafil doesn't help. Amongst the other options she outlined, in addition to the Lignocaine infusions and pulsed RF were continuous pulsed RF, which would permanently destroy the sympathetic nerves to my feet and legs (NO thank you!); Botox... (What???); Lumbar sympathectomy (invasive procedure and again, no thanks); and even Naltrexone, an opiod antagonist but that's not available on NHS, even if I were to want that option. Another that she mentioned was Ketamine infusion but I think she was just thinking out loud. We both agreed that the risk of addiction as well as "Ketamine bladder" rule that out as an option.
I look forward to hearing how your appointment goes today. Thinking of you.
a second ago in my reply to 282523 (re confirmation that my Univ Hosp rheumatology Scleroderma/Lupus/Vasculitis team avoids iloprost in patients with my type of adverse reaction to nifedipine) I mentioned that I’ve just had the tele appt with our CTDSN, it was another really good appt 😅:
-She has okayed my Sildenafil dose increasing to the max they give severe ischemia reperfusion patients ie 150mh
-She says that if sildenafil can’t help me enough, I’ll go before the Univ Hosp’s official panel as a scleroderma severe reperfusion injury candidate for Bosentan treatment. And it’s possible I’ll end up on both sildenafil + Bosentan, but this ONLY is given the official ok in sclerosus patients like me who are officially diagnosed with this sort of severe ischemia reperfusion injury
So, I got off the phone & googled bosentan! Found the current official NHS guidance for patients who qualify for both sildenafil & Bosentan...so here’s the link:
Am going to post a ‘partner’ question about this here now....then I gotta go, but am so glad you posted & got this great discussion going...sending you 🌈🦓🕊✨❤️
For me I lost quite a lot of sensation in my feet a year or two ago and also more recently in my mouth. So the EM has affected my hands the most. Last year it reached the stage where I couldn’t touch anything without intense pain - had to dictate all messages and any lists etc - could barely hold my phone for long. My feet also burnt and swelled but the loss of sensation took the edge off at least.
The neurologist tried to get me lidocaine infusions but my postcode was wrong and the nhs pain clinic I was under refused to even contemplate his request for lidocaine. The letter the pain consultant wrote back to him was severe, verging on rude. All they offered was CBT for pain management which I’d already waited a year for - now two!
So I’m very lucky in that infusions of a different medication entirely have helped my EM tremendously. I know from seeing patients getting all sorts including lidocaine, IViG, infliximab and other biologics, iron etc that Iloprost is the hardest infusion to tolerate and takes the longest too. I also know that the advice on who should get it has changed, funding now withdrawn for those, like me, who’s Raynaud’s isn’t evidenced by nailfold capillaries changes showing scleroderma.
So I’m very lucky to be under a rheumatolgist who works in the general rheumy clinic rather than the cardiovascular/ scleroderma one I think.
Anyway I’ve just had my 3 monthly infusions alongside another woman with my overlap CTD but who does have the nailfold changes and more severe Raynaud’s but no EM. It was lovely to meet someone else for the first time who has my conditions plus severe gastroparesis as well - so we were able to share notes and support each other when the going got touch - terrible headaches and vomiting for me on day 2 where they missed my pre-med of IV ondansetron and 30mg codeine.
But here I am typing. It’s sore but not excruciating. My hands and arms are still full of electric current rendering them useless and my legs are always wobbly now but this is small fibre neuropathy which I’ve learnt to co-exist with - not the blistering burn pain I experienced in my hands 24/7 up until Iloprost infusions. I guess I’ll never know if Lidocaine would have helped me but it is at least a very recognised treatment for EM, unlike Iloprost. I think I just got lucky with my wonderful rheumatologist on this as she saw my hands at their burn blistered worst.
Also of note - I think Erythromelagia is more commonly associated with RA and Sjögren’s than Lupus and Scleroderma. And I have read a couple of posts about this on the NRAS HU so it may be worth looking there too. Butthere’s a SRUK page about it which may possibly mention IV lidocaine as a known treatment that can help some people. These days though it’s all about NHS funding and the pandemic has inevitably impacted on this enormously. I was told by a nurse that a lot of Raynaud’s patients were getting Iloprost here until the funding was withdrawn and there was some outcry from patients when that happened. The clue from that for me is that no one would plead for or demand Iloprost unless their pain was so bad because it really is very nasty stuff. From the look of it much nastier and longer to infuse than Lidocaine.
The Lidocaine patients here seem to have fallen away too - presumably for same reason of withdrawal of funding for pain management infusions. But during my first two stays last year - when their infusions were running - they all had a very contented sleepy appearance I must say and I feel for them now not to be getting something that obviously helped.
Great detail, thanks. My rheumatologist has been offering me iloprost infusions for 10 years, but we kept agreeing to avoid this because iloprost’s basic type of vasodilation action is similar to nifedipine’s and 11 years ago I overreacted severely to nifedipine (only 3 days of basic dose made my EM permanently even more severe than it had been). But when I posted here at the start of my Sildenafil treatment 3 or so months ago, one replier said they are on both iloprost AND sildenafil for severe ischemia reperfusion injury related to raynauds & scleroderma....so, am now wondering if this combo may be next on my agenda
Interestingly, almost all the patients at my Univ Hosp’s rheumatology lupus & vasculitis & CTD clinic on sildenafil for raynauds ischemia reperfusion injury are diagnosed with scleroderma. And my severe mouth to exit GI tract conditions have most in common with those of scleroderma, sjogrens & hEDS patients: in all my support group forums, I run into this overlapping of immune dysfunction & connective tissue disorder conditions all the time 🤷🏼♀️
Out of interest: have any of your consultants actually officially diagnosed you with ‘severe ischemia reperfusion injury due to severe raynauds’?
I don’t think nifedipine can be that chemically similar to Iloprost compared to sildenafil because both nifedipine and sildenafil caused me terrible problems with oedema and nose bleeds. I get neither with Iloprost but I do get the same awful headaches and also nausea unless I’m given the full whack of ondansetron and codeine first. It does cause me to flush hugely at various times during the day but when I’m feeling my worse there’s no flushing - just a feeling like my head will combust. But you have to remember that it’s 7 hours per day over 3 days and then that’s it - no more hell of Iloprost for 3 months! Whereas the oral meds are taken daily and as I have severe nose bleeds with my Sjögren’s anyway I can’t put myself through taking these oral meds again. I did try nifedipine again briefly but arrived on my GP’s seat red and holding my head in hands asking if I should persevere but he just said no way.
And he’s a bit of a deferential twit where meds prescribed by consultants are concerned so that says a lot!
I think it must vary from area to area but here Sildenafil seems to be handed out to anyone with Raynauds who hasn’t got on with the pine family.
Iloprost is expensive because it requires patients to be in hospital for 3 long days and that costs loads in terms of beds and staffing. Sildenafil is cheap as chips now and not a big deal to let patients try I guess. I was given it by my rheumatologist 4 years ago as a standard Raynaud’s med - although I wasn’t and still am not fully diagnosed with scleroderma. Iloprost is used only for scleroderma patients here so I’m very lucky to have that antibody I guess because I don’t have the nailfold changes or skin tightening insisted on by most scleroderma experts.
Answer to the latter - no ischemia has never been mentioned and nor really has anything much re my Erythromelagia. No one really seems that knowledgeable or concerned enough here to explain the mechanisms or why my the pain in my hands tortures me regularly. Nor does anyone seem keen to work out what is causing my worsening GI problems.
The neurologist I only saw once this year was the clearest and explained that it’s a neurovascular disease and he felt my gastroparesis and EM were more vascular than neuropathic - as do I.
He said it’s too much of a coincidence that EM and gastroparesis arrived with my specific scleroderma antibody and I agree.
But it’s really not in my best interests to be diagnosed with systemic sclerosis or I will lose my lovely rheumatologist and have to go back to the scleroderma team of two - who were always sticking me back to neurology for neuro -Sjögren’s - and who would definitely stop my Iloprost infusions because they no longer have the funding and would want me to try Bosentan instead.
My lovely rheumi is of the opinion that it doesn’t really matter what we call it and she’s happy to keep me as long as it’s not in my nailfolds. She said it’s clearly CTD and anyway she’s happy to treat me as a scleroderma patient would be monitored and treated, regardless.
So I’m sticking with her rather than striving for a name.
Personally I think too many people on the LUK and others look for a disease label at the expense of all else. If it’s not reflected in specific antibodies or histology then, not unreasonably, it tends to be called UCTD. Mine is reflected by a very positive histology for Sjögren’s, raised immunoglobulins and a very positive scleroderma antibody and so it’s called Overlap CTD. Once people are on our treatments that’s what counts.
If I was being treated then I’d not pay some jumped up private rheumi in a so called centre of excellence to give mine the right labels. Labels matter only for research purposes and this is very important so I don’t want the wrong labels ever again as it hinders research.
If you have Sjogrens diagnosed by the specific antibodies then that’s fine but otherwise the lip biopsy is the only other important way it can be confirmed. If it’s just suspected or presumed then that’s not diagnostic enough for me because it doesn’t help research and same goes for my normal nailfold capillaries. So I don’t claim to have scleroderma and I don’t think I should.
But also really I’m beyond the point of caring what name it’s given or what it was originally ie at birth. It’s monitoring and treating the most active CTD that matters to me now and they could call it Katawampus (a Victorian children’s book I was brought up on!) for all I care. I’m finally on the full gamut of treatments and my heart and lungs are being monitored and I’ve been referred to nephrology for interstitial nephritis of Sjögren’s so I’m on track thanks to my lovely general rheumatologist. The rest can all take a hike! X
👍👏👏👏👏Just had my tele appt with rheumy’s CTDSN who confirmed that they avoid illoprost treatment If a patient has the sort of adverse reactions to nifedipine that I have had.
In my reply to skylark above, I’ll give more about our appt inc the treatment I’ll be offered next if I need more than max dose sildenafil 💞
Well you’re at least very lucky to tolerate sildenafil BC - it was horrendous for me - the nosebleeds almost took me to A&E. Iloprost is horrid but it’s only for a restricted period of time and as I say I couldn’t hack nifedipine either - I swelled so huge I couldn’t put my shoes or socks on and it caused a rash that looked like scurvy. None of this has happened with Iloprost but it’s not nice at all - toxic- so I’d stick with the viagra if you can 😉😘
Hi, 282523.Yes, I agree, a great answer, thank you.
I lost sensation in my feet and hands very gradually several years ago. I don't have EM badly in my hands; My feet have always been worst affected.
I'm glad that you have treatment by infusion that has relieved some of your symptoms and that you can type again. That's great.
I recognise that I'm very fortunate to be under the care of a helpful rheumy, a pain consultant and a neuromuscular consultant, (I have a form of muscular dystrophy, FSH, which was diagnosed only recently, when I was 67), and a dermatologist as well as a uro-gynaecologist and a general surgeon, all at the same very nearby hospital. The only problem is that they don't talk to one another: it's left to me to explain to the other relevant consultant team/s what anyone else is prescribing or proposing
🙄. I'm planning to ask for a referral to a gastroenterologist, too, to help manage my very slow transit bowel and its associated, distressing symptoms.
I'm rather of the same opinion as you: a precise pinning down of a diagnosis is sometimes not actually helpful and often seems uneccessary. I just (!) need help to cope with the blooming symptoms, please!
Thanks again for a full and helpful response to my post.
“Intravenous infusion In some cases, when pain has not been controlled by medication taken by mouth (orally), an intravenous infusion (when medicine is given directly into your bloodstream via a drip) may be used. Lidocaine – a local anaesthetic that blocks sodium channels and can help nerve-related pain – may be given this way, but how long it works for varies. Your doctor will explain the procedure to you and how you should prepare for it.”
ok since your in pain try this (wild lettuce extract) mt rose herbs, ebay i sue it for pain works great ok. let me know how it works, also prednisone, prazosin 1 mg ask the doctor about it. good luck love julie
Thank you all for your experiences. My secondary Raynaud’s is being managedish with Iloprost but I’m having Erythromelalgia flares in my feet and calves. I’ve tried nifedipine and sildenefil (sp) but cannot tolerate them: my blood pressure drops too low. Iloprost is carefully managed for the same reason, but at least I’m a day patient for it. EM I’ve had from time to time over the years, but mainly in hot weather. Now, the temperature outside doesn’t matter as much, but at least I have times of relief. At it’s worst I can’t bear anything to touch my feet or calves, so sheets at night can be a problem, but what I find worse is water touching them, whether in a bath or shower.
Although I wouldn’t wish Raynaud’s feet on anyone, my perception is that there’s much more I can do for them than when EM strikes.
I think neuropathic pain (and EM basically is intense neuropathic pain) is the absolute pinnacle of cruelty. I’ve had it for over ten years now. It started in my soles and was about contact - so walking to toilet was like walking on burning coals. Then it escalated to walking any distance at all. Then it moved up my legs so I felt I was wading in cold puddles filled with bitey things.
At the same time it moved up and down my arms as warm flushes with pins and needles and then entered my mouth (the worst by a long way). Bearing in mind that I never show emotion in front of health professionals other than dry humour and friendliness and very occasional biting anger - I recall actually sobbing in front of two helpless but kind junior doctors and a consultant because of the pain in my legs.
But Iloprost also gives me intense pain sometimes in my jaw, teeth, mouth and legs - especially my knees. What’s that about I wonder? It’s manageable if I am given 30mg codeine and IV ondasatron first. But last week on day 2 they couldn’t get hold of IV ondansetron and it was manically busy in the clinical investigations unit. Covid is spiking again here (highest rate of infection in Europe in my home town presently) and this time the hospital is full of backlog patients as well so I got put straight on Iloprost and forgot to remind them about codeine - just got a couple of paracetamol.
By mid morning when they came with iv ondansetron my head felt fit to explode and it was too late to ask for the codeine. I couldn’t believe the pain in my legs and face - it took my right back to the worst flares in my early days - like toothache in my knees, face, hands, calves and even in my numb. Yet nothing went red??! By 4pm I begged them just to switch it off and my BP was so high and I had was so ill that they made me sit for another hour checking my obs.
Friday I got in even earlier and told a different nurse what had happened and she put on big letters on my notes “pre-meds always required - order enough prior to her infusion week). Friday was long but fine and broadly pain and nausea free.
So hands aside (right now and every morning they look and feel like you all describe your feet!) I am sure Lupiknits would agree that we wouldn’t plump for Iloprost lightly. Apart from anything else it entails being in a chair/ recliner or hospital bed (if lucky) for 7 hour stretches. My BP doesn’t often plummet despite 100mg Losartan and max Iloprost - it sometimes soars?!
But to have the excruciating EM pain and in my hands reduce from 24/7 to only in early hours in humid weather and after Raynaud’s attacks previous day is a revelation! It’s a weird thing to celebrate but I reckon Iloprost is such a huge whack that it’s actually killed off many of the small nerve fibres in my extra bad places eg mouth, feet and hands - especially feet and mouth. And numbness may be the final irreversible state advanced neuropathy leads to - but it’s a helluva lot better than the worse pain I know! X
Thank you for sharing. It sounds as if you are really going through it. That bedclothes thing: I know it well and water-I can tolerate luke warm water but that rules out baths: I get so cold that the cycle starts all over again. You have my deepest sympathy.
It's interesting to hear of your experience with Iloprost: My BP is normally ok but if I go down the I/v Iloprost route , I will certainly bear that in mind. At the moment, I'm tolerating Sildenafil 25mg twice daily and because I'm awake in the small hours, with my feet on fire with a combination of EM and ischaemia reperfusion pain, I sometimes take my BP. It's still ok, so I think I'd be able to tolerate Iloprost if Sildenafil doesn't help'.
I think some people with ischaemic reperfusion pain (which I'm going to abbreviate to IRP or IRI for when there is damage caused to the affected tissues, are taking Sildenafil and having infusions of Iloprost..
Hii. So sorry to hear. I also had it erothomylegia in my Palm of hands. I did have burning sensation pain and I took painkillers for it. My doctor told it was a side effect of bosenton medicine. I even had blisters. I still have problem of it and it happens while I use gadget like mobile I get such kinds of problem. Plus I was also on sidlenafil too later my doctor shifted it to tadalafil and now I'm on that medication.
Hi, I have had Erythromelalgia for some time. It started about 6 years ago with tingling toes. 2 years ago I started to get the hot burning feet with pins and needles. I also have a neurologic condition which causes intense skin pain for this I take a high dose of gabapentin and steroids daily. So I got the hot feet syndrome even with the gabapentin. I have splits and cracks all over my feet which won't heal. One on the bottom of my foot is very painful to walk on. I tried taking Cialis/Tadanafil but it made things worse causing my feet and face to swell, gave me a bad head and caused nausia. I used to use a pet cooling pad, ice packs and ice gel slippers but I couldn't use them in bed. A fan directed on my uncovered feet didn't cool the just made my skin sore. The most effective thing is cold water. I'm dipping my feet in and out of water all day. I cant sleep in bed as im up and dosn all night trying to cool my feet instesd i sleep sitting up in a chair so I can cool my feet in water during the night, it's the only way to get any sleep. I can't go out because the swelling means I can't get any shoes on. I have been going barefoot indoors for the past 2 years. Because of the pandemic I haven't been able to see my doctor. I finally got an appointment to see my GP next week. Shocking isn't it. I did mention this to a consultant dermatologist 2 years ago and he didn't have the foggiest idea. If you find a treatment that actually works please let me know this is driving me bonkers.
Nope, not yet. I wish I had. The pandemic and the backlog of patients needing urgent treatment has really delayed things, so unless I come up with a new, troubling symptom, I'm waiting for the very delay routine reviews.
I'm so sorry to hear what you are going through. It is hard to bear. Re. cold water bathing of your feet, I was advised that it can further damage them, so I stopped using that cooling method.
Hi Tess thznk you for your info. Can i please ask one quick question.....what cooling method did you switch too? A fan only makes my feet dry and sore. The cooling pad doesn't do anything because they only cool the soles of the feet. My greatest heat comes through my toes and the gel slippers only bring brief relief. The sprays and creams ivd tried don't do anything at all. I also suffer from vulvodynia, arthritis in my fingers and knees, severe IBS, dry eyes, skin hyper sensitivity and the neurological condition. I can't take oral pain killers as they make me ill. I am at a loss as to other methods? Any advice would be greatly appreciated.
I used to use Dermacool gel, which helped a bit but is arather sticky. I'm lucky enough to be able to tolerate Paracetamol and occasionally, 60mg Codeine phosphate. I can't take anti-inflammatories. Walking around on the cold floor tiles helps whist the painkillers kick in. TBH, I think the effect is more pyschological than actual pain relief and the codeine helps me get back to sleep. I can also tolerate a fan blowing on my feet for an hour or so. There may be other people on here with EM who can advise you, too.
As for the non-healing cracks on your feet, I would ask for an urgent appointment with a Podiatrist. With your conditions, you should qualify for regular care of your feet. Between Dermatologist and Podiatrist I finally found a regime of skin care that really helps. I use a 5% product called E45 Cream with Urea and Lauramacrorgols (no idea!) as a body lotion and a 25% Urea cream called Flexitol for my feet, especially heels. I use a pumice stone every now and then on my heels as well. I never use soap or anything that foams up; instead I am prescribed Dermol 500 Lotion for showering. It has to be rinsed off. If I run out and use soap or shower gel, my skin is so dry it looks like a snowstorm when I undress...
Once I had the cracks on my feet healed up and walking wasn't so painful, I could concentrate better on the other stuff. Oh, and at night, I use Atrixo (the yellow pot, with Chamomile) and have done for years. I find that is magic.
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