I have just come home from my pain management appointment where my specialist has recommended and referred me for Lidocaine Infusions. He seems to think it will help with my EM and also my chronic widepsread nerve pain.!
Have anybody else tried them with good or bad results..???
I had a not very nice reaction to Lidocaine injection when I had my biopsy but my specialist seems to think that the flare was probably caused my the biopsy rather than just the Lidocaine.!
Laura
Hi
I’ve been having these infusions for about 2 1/2 years now. I have 750ml over 8 hrs now every 2 weeks I started lower 500 ml every 4weeks
I really benefit from it and it does make a huge difference to the pain
Good luck I hope it helps you too
Feel free to ask anything
Viv
Hi Laura,
Yes i have and at Norwich pain centre. I had one that only helped for around 10 days - eased things very slightly. Also had it for EM and chronic pain syndrome. They refused to do a second one as too dangerous side effects(what i was told personally by specialist as i kicked up a big fuss- nothing else has ever caused reaction and i cant stand it anymore - im disabled and constant flare). Is the specialist Valentine or Hudspith? Either way go for it. They are probably checking whether you react to sodium channel blockers(seems this is a one off test as dont give this treatment as matter of course in UK. ) I am now on tablet form which is doing nothing. Has to be tritated up vey slowly so still hoping for some relief. Im really bad at moment but as you said in PM , we must meet . If you want to ask re infusion just PM me for my phone number. I got some research on it too if you interested. Thinking of you. God bless mads x
Hi I have lidocaine pads which I put on my fwet whwn I have a flare up, has some effect. I have also had one trial of an infusion which had no effect what ao ever for me. Anything ia worth a go though I think. Good luck.
Hey Laura
Don’t know about infusion but I had an instant flare up with Lidocain cream as it tends to heat up the area where you apply. Hope you have better success with the infusions
Keep us postec!
Hi Laura, read with interest your questions and concern about the lidocaine injections. My 40 year old daughter has EM in the worst way, so I took her to a doctor who gave her the injection. It was awful, to say the least. It didn't help her at all, and truthfully, I believe it aggravated the condition more than helping it. I guess it just depends on the person's health at the time of the injections and how they react to medications. Hers wasn't good, but that doesn't mean you would have any problems. Have you ever had any reactions to medications before? I would definitely research it. Very best of luck to you and I hope everything goes well. Would love to hear back from you.
Punkin
Hi there everyone,
I started lidocaine infusions in June. The first one worked wonders for about 2 weeks and then it was like a light switch had turned on and I was back in pain. I had the second one in July and it did nothing. It actually gave me 3 days of the worst pain ever. I am due to go back September 10th and the Dr. said he would try ketemine this time. I am in Canada and OHIP will only pay for 6 per year which is not great. I am on Lyrica, amitriptylline and Percocet for the pain but little helps. The Percs take the edge off. Oh and clonazepam- don't take it that often but sometimes. Living with EM really robs you of so many things. My heart goes out to each and every one of you. Sometimes I feel so very alone. No one in my family really "gets it". It is hard. I had to quit my job a year ago and have been waiting since April for an answer from disability whether I am approved or not. Big hugs everyone.
My specialist is Dr Valentine but I saw a Mark Sanders yesterday in Valentines surgery. Lidocaine was something that was recommended last May by Dr Bennett in London but as I was trying other meds at the time it was put on hold. I've been told that some people can get months pain relief and others only a short time. They are going to do the Lidocaine challange first so will be about 30 minutes IV infusion to see how it affects me.
mads said:
Hi Laura,
Yes i have and at Norwich pain centre. I had one that only helped for around 10 days - eased things very slightly. Also had it for EM and chronic pain syndrome. They refused to do a second one as too dangerous side effects(what i was told personally by specialist as i kicked up a big fuss- nothing else has ever caused reaction and i cant stand it anymore - im disabled and constant flare). Is the specialist Valentine or Hudspith? Either way go for it. They are probably checking whether you react to sodium channel blockers(seems this is a one off test as dont give this treatment as matter of course in UK. ) I am now on tablet form which is doing nothing. Has to be tritated up vey slowly so still hoping for some relief. Im really bad at moment but as you said in PM , we must meet . If you want to ask re infusion just PM me for my phone number. I got some research on it too if you interested. Thinking of you. God bless mads x
Thanks for all your replies, it seems that like all EM treatments it affects people in varying degrees. I think I will give it a go once to see how I react. (Only worry is I usually end up with all possible side effects of most meds I've tried)
Hi Laura, I am not too sure if I should give you advise or not as I am not a medical professional nor do I have EM. However, the only thing I would suggest is be honest with the specialist that you see -- tell him/her about how the injections and/or treatments effected you.
Hello fellow mod!
I've been having them since January 2012 and they can delay the onset of my EM flares by a few hours. I think it does help my nerve pain too. As the effect has worn off as time goes on, I may need to take a break for three months but I am afraid to do so, as I think the nerve pain might get much worse.
I'm having my next one on Thursday as it happens. I only get a few days effect from each infusion but I seem to have a strange mutation that makes me burn through the stuff really quickly and also gives me the ability to drink big strong men under the table (I'm not kidding, I once drank 50 units in a night and was pretty sober).
The infusion can make you flare at the time, so be aware of that. I sometimes have two or three bad days before I get the effects of the lidocaine. You can ask for the rate to be lowered if you find that the flares get worse as it increases. However, you may feel rather unconcerned as it can make you feel pleasantly drunk!
The infusions work differently to injections, patches or creams, so don't panic if these have had no effect or made you worse. For those wanting to try lidocaine, it must be an infusion to get the effects discussed in this thread.
I know it's frightening to try these things, knowing it might make us worse, but it's the only way. One guy who gets lidocaine for a different neuropathic condition gets such good relief that he doesn't take any drugs for the pain, just gets a lidocaine infusion every six weeks.
Hello everyone,
Well I had my third lidocaine infusion last Tuesday and I got 7 days of pain relief. The pain was 100% gone all week and then it all came back again Wednesday. I cried most of yesterday and all of today. The treatment is almost a tease. For 7 days you feel amazing ( well I did) and then bamm, you are back to it all. So frustrating. My home care nurse suggested talking to my Dr. about subcutaneous lidocaine and said she could administer them 2 times a week. She has other clients that get them and overall they have about 70% relief all the time. Has anyone ever tried this?
Thanks.
Hi theCatlady,
I had same problem as you - feel great for 10 days then bam back to hell. My specialist is trying me on oral lidocaine- analogue version called oral mexiletine. Problem with lidocaine is that it has half life and doesnt stay long in body. He wont administer me anymore as now considers risk outweighs benefits.In order to achieve and prolong 'sustainable relief' specialist thinks mexiletine (which is sodium channel blocker too) might work. Research i have done seems to point to a strong correlation between ones response to lidocaine and mexiletine. There is very good predictive validity in terms of reaction and relief. As you do have good albeit short lived responses (like me) to lidocaine, i think we might be on to something here by trying oral equivalent.We can tritate dose up - allows some flexibility too - as some of us need more than others. I had to be heavily loaded up with lidocaine in order to respond - but then im also on lots of opiates too.
I have tried other soduim channel blockers which didnt work- only lidocaine helped me so........ fingers crossed.
Maybe you could suggest to your specialist. I am happy to send u some research which corroborates.
Subcutaneous - possibly if your EM is just localised to toe or similar- that will work same as patches. I have widespread EM so no go for me.
God bless
mad x
I get subcutaneous lidocaine as my veins are so rubbish they can't cope with infusions every three weeks. It works for my widespread EM just like the IV. Although I find the effect isn't quite as good as the IV (four days relief versus five days), I can have the infusion more frequently.
Can I ask what dose you get through the infusion? I get 1 gram or 1.5 grams if the doctor will prescribe that much. I also get it as 125ml per hour which equals 0.2 grams per hour, which is the fastest they will give the drug.
I am part of an international study and it seems to suggest that what rate (ie the faster it is given) you are given the drug affects how well it works. The higher the rate, the better the result.
Different people respond differently, so for some the maximum rate may be lower than that. As long as they get it at a rate that doesn't give them the dangerous side effects but which may make them pleasantly drunk and sleepy, they'll get the best effect.
The reason a subcutaneous injection of lidocaine doesn't work - when it is used to numb the area - is because the dose is so much lower when used that way. That's what my previous specialist told me, anyway, he was a horrible doctor but I think he was right about that ;).
My specialist wants me to try metixeline, so please let me know what happens with you.
thecatlady said:
Hello everyone,
Well I had my third lidocaine infusion last Tuesday and I got 7 days of pain relief. The pain was 100% gone all week and then it all came back again Wednesday. I cried most of yesterday and all of today. The treatment is almost a tease. For 7 days you feel amazing ( well I did) and then bamm, you are back to it all. So frustrating. My home care nurse suggested talking to my Dr. about subcutaneous lidocaine and said she could administer them 2 times a week. She has other clients that get them and overall they have about 70% relief all the time. Has anyone ever tried this?
Thanks.
Hello and thanks for the information, I had got it in my mind that I would give it a go once the appointment came through but have just recieved some worrying test results (see my post EM and MS) from my London hospital visits last May and feel that this might take priority... It never rains but it pours.!
Hello- a quick update regarding the lidocaine infusions. Since I only get about 7 days of relief I am starting on continuous subcutaneous lidocaine infusions this coming week. I go for liver function tests in the morning and then I will start them Monday or Tuesday. The dr. will keep it running for 3 weeks and then see me. I hope I get at least 50% relief.
Hi again,
I had another lidocaine infusion last week and I only got 5 days of relief. I was getting 7 days before. The doctor started me on melixetine last week. Only 100 mg daily for now but he said I have room to increase it to 800mg over time if needed. Just wondering what kind of response everyone has had with this drug. One good thing though is that this week my disability for Canada Pension Plan Disability was approved. It has been 6 months waiting. It isn't the lottery but will cover my meds that are not paid for under the government. Take care everyone.
So glad you got your disability sorted. I am still waiting for an appointment but I think they might’ve put it on hold until after I’ve seen the MS specialist at my local neurology. The nerve pain is getting much worse and was hoping this might have been a solution… Got my app with ms specialist in two and half weeks so hoping for some answers and relief soon.
Take care everybody x
I finally got approved for continuous subcutaneous lidocaine in a pain pump. I go for my big infusion Tuesday and the doctor will put it in then. I am so excited. The thougts of having some relief on a daily basis thrills me. For those of you that have been reading the mexiletine posts, I am still on it and it ihas also really really made a difference. I am still getting the ankle pain but the actual flare ups with blisters and hot feet have reduced. God bless to all.
Wow, so glad you’re finally getting the pump, I really hope it gives you daily relief. Keep us posted how it works.
I mentioned to my neurologist about not receiving an appointment for the first infusion yet and he kind of turned his nose up at it and then went onto something else. I guess it was because he now believes that most of my pain is ms related and not just em.
Laura