Hi, I hope everyone is doing okay. I would like to ask about pregabalin (Lyrica). Is it a calcium channel blocker and vasodilator? I have been taking it now for about a month, but the flares seem to be getting worse, eg, feet flaring more severely spreading to above the ankles, and hands getting redder. My knees tend to remain between purple and red and hot, but my whole legs often feel sore and hot to touch and pink. My feet become stone cold when not flaring, with pale toes and purple heels. My feet flare badly at night with painful swelling of my toes. I note that a side effect of Lyrica is swelling and also hot feet! I’m wondering if a sodium channel blocker would be more effective. I’m in the UK though and know it can be difficult to get lidocaine infusions and Melexitine. I’m quite concerned that the Lyrica may be exacerbating my flares however and would appreciate your experiences. Thanks.
So sorry to hear about your struggles. My daughter is fortunate to be trying to reduce her dose of Lyrica. It was working but the weather is not so hot in Philadelphia (northeast US) yet. She is not flaring as badly but is having some redness and heat. Gabapentin was even worse for her. Both gabapentin and pregabalin are calcium channel modulators but not blockers. Not sure if this helps.
Hi I’m in the UK to and I also take Lyrica, luckily I don’t have the same reaction but they also have me on Aspirin which seems to help and fluoxtine. Touch wood I’ve been very good on this combination. Might be worth asking Dr’s.
In the US, they are no longer using any systemic prescription drugs because they found they not only don’t work but the side effects are problematic.
I finally had my appointment with one of the top specialists in Erythromelalgia at the Mayo Clinic in Rochester, Minnesota, and he prescribed a TOPICAL cream, which consists of 2% amitriptyline and 0.5% ketamine. It can be made stronger if needed. I have very severe Erythromelalgia as well as Reynaud’s from both feet to both knees, and I flare constantly day and night, and started this cream a month ago and it has changed my life. It numbs my feet and relieves the pain so I can sleep.
There are two additional prescription topicals he may add to it If I need more relief in the hot summer months.
This is just my personal opinion, as I have tried everything else, but now that I have a specialist that has studied Erythromelalgia for 22 years, I feel like I’m in very good hands. He works alongside Dr. Davis, his superior, who explains the topical cream on a Mayo Clinic video on You Tube and why systemic medications don’t work and how they can be harmful. Dr. Davis also published his findings on this cream compound in JAMA, which is able to be viewed online.
Anyone in the world is able to get virtual appointment at Mayo Clinic for this disease. It is a process to get your first appointment but we’ll worth it. The doctor talked to me for an hour and was so caring.
I feel so bad for all of you who suffer from this. I will keep you all in my prayers. You are not alone
Thank you all for your kind replies.
Several things. 1) topicals from Mayo either made me worse or didn’t do much. Everyone is different but with all drugs go slow until you know how you respond. What helps one may make another worse 2) Been on Lyrica for 15 years and it does help with both SFN and EM. It helps quite a bit both with frequency and intensity of flares. Kept me off disability for the first 13 years of EM. But I broke my ankle 2 years ago and my EM went to hell in that foot. I started Mexilitine (Na channel blocker) and it helped way more than Lyrica. It’s been the best drug for me and I’ve tried at least 20 different things over the years. I have no side effects to Lyrica and am still on it. If I cut it down my EM is worse. Also helps with SFN pain. But I’d kill if someone tried to take my Mexilitine. I knew on the first pill it was a difference maker. Go slow though. Start with 1 pill a day and work up. Most people settle on 150mg 3x a day. I actually take 200mg 3x a day with no side effects.
After trying several medications, to no avail, I found one prescription medication that works effectively. It has worked for several years. Carbamazapine 200 mags. I take up to 800 mags per day. I take care to eat enough before each dose of 200 mgs or 400 mags to keep from falling. If you would like to discuss the regimen call me at 707 755 4696. Leave message that you are referring to Erythromyalgia.
With all due respect, I think that’s an overly broad generalization. I live in the United States, have taken systemic medication (mexiletine) for 6 years, and my EM is either in remission or has resolved. I no longer have symptoms. So, it’s not accurate to flatly say systemic medications “don’t work.” They may be ineffective for most cases.
Yes, that was a broad statement and I retract it so that I do not spread misinformation, especially since you have been helped so much by your medication Carter. I’m very happy to hear that. I was repeating the language I heard by one specialist but not taking into consideration there are still many doctors (and patients) who do need to try every means possible because what doesn’t help one of us may be extremely beneficial to another. We are all struggling with this terrible disease and I thank you for your response. Anyone else reading this please do not take my post literally, Carter (and I’m certain many others) have been helped by a medication or a combination of medications, so keep the faith and stay strong everyone.
Not a problem, Tita! I didn’t think it was misinformation, just overly broad. It may certainly be true the majority of EM sufferers aren’t improved with systemic drugs. It’s a very difficult to treat condition, as we are all painfully aware.
Thank you so much for understanding Carter. It is so important that all of us suffering with Erythromelalgia have an open forum to discuss everything that helps because each of us, although having the same illlness, is going down their own painful, emotional journey. I have seen your posts and replies in the past and you are truly the “glue’ that keeps us all together on the same page. Bless your heart
HI, I take Lyrica and it is the main medication that works for me. I still flare - a lot - but doesn’t hurt nearly as much. Due to problems with my insurance company, I was taken off Lyrica and went onto the generic and my symptoms were so much worse. (I had no idea that the generic and brandname were not the exact same drug). Lyrica can take a while before the full effects are felt. What I do know is that EM is so different for different people, and what works for some might not work for others.
I am also in the US.
Once again thank you all for your advice.
I have a combination of cold and warm extremities, at different times of the day. When the very cold digits would warm, it could cause flaring. It’s a bit like raynaulds in that way, where spasm of the small vessels would lead to reduced blood flow, and then later really increased blood flow and heat…but definitely not classified either as EM or raynaulds… I have used both propranolol and pregabalin, and found both reduced the intensity of daily warm flares, reducing heat, etc, but it worsened the vasoconstriction, leading poor blood flow and small ulcers, to the point I needed to stop both. The ulcers cleared up right away and Im left with mainly warm to really hot toes. For me, and a few others, it’s like balancing on a knifes edge with either too much vasoconstriction or vasodilation.
You mentioned cold feet. It was unclear if the pregabalin made the feet and other areas cooler before they flared? If not, adding or replacing with propranolol could be helpful.
I want to add to the chorus of opinions here, but I need to get to sleep soon. Lyrica is a drug some try and for EM it seems every drug has about a 30 percent or 1/3 helpful trend for some, 1/3rd of the patients seem to see no change and 1/3 seem to have worse symptoms. The reports often are based on 1/3, 1/3 and 1/3 help, nothing or worsens the symptoms.
Lyrica is the same thing as Neurontin. And it just has a molecule change where it has a piece fall off and turns into Neurontin inside the body. Lyrica has different dose levels than Neurontin so there is some more variable levels of dosage with it compared to Neurontin. Mom in our case tried both Lyrica and Neurontin and didn’t really get any good results from either, but she was addicted to massive doses of Neurontin as the Neurologist tried to up the dose more and more and help “cure” her bad nerves. But she became very much addicted and tried to get off it cold turkey and was missing sleep and had to be taken to the ER because she lost her mind for a while from sleep depraved states stopping neurontin to abruptly and losing sleep. So side effects of pills or their addiction can also be a problem with massive doses of pills. That was NOT a cool time but she’s been off those pills for a long time now.
Ketamine is amazing. But it’s also dangerous. I have a friend who is an MD, but not practicing and also was a vet and worked at an animal hospital. He said he used Ketamine on Cats and they would go crazy when coming off the stuff and they’d have to line the cages with towels to keep them from harming themselves when they came out of it. He gave me his opinion as a friend, NOT TO USE Ketamine at all. He said he’d never give it to a human after seeing what it did to cats. But ketamine to put people to sleep in a coma for operations is different than Ketamine cream on the foot which may not even be registered in the blood stream. Ketamine will have an effect on the nerves of course and small fiber neuropathy is nerve problems in the foot near the skin. Other forms of neuropathy may be further away from the site of application of the cream and they may not be as affeted by it, but are more affected it seems with higher doses that reach the blood stream and are registered in the blood stream.
I talked to a psychiatrist because ironically mom has a diagnosis from him that I was unaware of until 2014 which was hidden in her medical records. I don’t agree with his diagnosis but who am I to dispute it. I’d need another guy in the same field and maybe even a NEURO-Psych guy to over-ride that diagnosis. But anyway that diagnosis calls for concern of mental changes that can be triggered with Ketamine, throwing the patient into an episode. When I talked to this guy, who by the way gave mom the drug that CAUSED EM in mom. I told him about it and he said he didn’t recommend it for it’s adverse side effects, but I said at low doses in a trial it didn’t register in the blood stream at all. Looking at the Mark Davis study data. And he said in that case we could try it because the Ketamine would not reach the brain. So we tried it. With his blessing and that of an MD who authorized it’s use. Ketamine reduced the pain level to 2 or 3 so low mom didn’t notice it. She said it was as effective as a TIBIAL NERVE BLOCK, which is what they would do to you to operate on you’re feet. She has had diagnostic nerve blocks to give her some relief from pain flares, but rarely goes out and does stuff when they are used. Sometimes she says the nerve blocks help and sometimes she says they seem to be a waste of time.
Ketamine comes in two molecular structures one is left handed molecules and the other right handed. One is better for pain and the other for knocking people out. But the ketamine delivered to the local compounding pharmacist is of unknown molecular structure, so it might be good for neuropathic pain use and it might be less useful and it could be a mixture of both molecular structures. So the compounding pharmacist at least the one we used HAS NO IDEA which ketamine they are providing inside the cream they make. We used .5 percent Ketamine in both formulas we tried in two three day tests, one with 1 percent AMIT and the other without.
It seems from some of the trial data Ketamine works better on EM if it reaches the blood stream, but Ketamine is also very dangerous in ways to the human body with side effects. It can cause hallucinations and also cause some symptoms to worsen for example some psychological symptoms. My mom tried three days of Ketamine treatment with the most low does of Ketamine and Amitriptyline cream and the results were amazing but side effects from the Amitriptyline were undesirable, which is ironic as it’s often used to negate the hallucinatory effects of ketamine. But my mom was on Ativan as well for pain and we tried a second trial with only three days of just Ketamine without the AMIT in it, The second trial for us had less side effects, but it still had a bad side effect and created a GATE DISTURBANCE in mom, which means it made my mom more shaky on her feet and unsteady and fragile. So she could not walk as well. That gate disturbance didn’t seem to clear up. This from only six days of treatments. We also tried TIBIAL NERVE BLOCKS with lidocaine, which were diagnostic nerve blocks for EM to numb the feet. The first time we did it with a foot doctor doing the work mom had almost no pain at all for 10 hours which was amazing for her. But she didn’t really do anything with that pain relief she just sat in the chair as usual and napped and slept at night for about 10 to 12 hours. Then the type of numbing agent was varied as well over three treatments and different agents were tried. Pure Lidocaine used to numb a foot for an operation worked best. The slow acting medication that was slow acting was the worse block and did little. For the Ketamine for my mom she said it was BETTER than all the OPIOIDS she took all together that Ketamine cream was better at reducing pain than all her other pain medication combined which included 10/325 NORCO, 50mg pain patch, Ativan, Cymbalta 50mg once a day and Motrin. All those doses were carried out while the ketamine was applied and it does have an ADDITIVE effect on opioids so it could be that the cream with the other medication made it more effective as well. She did get an OPIOID reset for tolerance from the Ketamine, and this was from 2016 test and the reduced need for Opioids at a lower level seems to have been a permanent reset as she really doesn’t need as many Opioid doses now as she did before the Ketamine test. So her negative side effects is she is more frail and less steady on her feet, that is bad. But the positive side effect was she could get buy on 25 percent less than max dose of Opiods that is the pills, but she could not do that before the Ketamine. And this is still true today. She is on a 25 mg Fentinyl pain patch now down from the 50mg for the last 6 months. She’s more active with less Opioids, but more frustrated with more pain complaints
One thing that fascinated me about Ketamine was perhaps as it has some positive benefits at higher doses on CRPS (RSD) cases in the suicide disease maybe it has some kind of overlap in how it works with some EM suffering patients. In other words the NMDA blocker antagonist properties of it which help some with CRPS may have some nerve damage or nerve related issues that are related in some ways to how nerves are malfunctioning in EM patients as well. If Ketamine is beneficial to both, then perhaps other NMDA blocker antagonist treatments like Alzheimer’s drugs like Memontine, may also work on EM. I don’t know if this is a clue to a tie in or similarity between some kinds of CRPS and EM. But maybe it’s a clue. A neurologist could be much better in giving his or her opinion and verifying if this is something to be tried for their patients. As usual I’m questioning and bringing up points, but I’m only a caregiver and not a medical professional or giving medical advice, so talk with a good doctor and get advice for you’re condition from them, not me. Here’s some stuff I found out which is also a bit interesting in the photos. Ketamine may not be of a known type at you’re lcoal pharmacy and it may not be the kind someone else is getting. And also FLIR images of a burning foot patient and some with neurological diseases will show different patterns than normal feet so the flir images obviously showing flares here will show often a different pattern, like localized patterns of heat and cold which are not as uniform as that in a normal foot. I took a picture with my FLIR one iphone camara of some workers at a local Little Ceasars Pizza and noticed a unusual pattern on one of the clerks face. I asked her if she had anything strange with her health as her face had very uneven hot spots on it. She said yes she has Neuropathy. So the flir images she had in her face showed a pattern not seen on other faces and that was a sign. Doctors according to one study may use FLIR images as further proof something strange it going on with you’re nerves. See differences in EM patient my mom and my normal foot.