HI, I am new to the group. I have had EM for about 1.5 years, but diagnosed about 6 months ago. I have started seeing a new rheumatologist and just think she is really trying hard to help me. After reading some of your posts/comments, I don't think my EM is as severe as many of yours. I get flares in my hands almost daily. I get the red hands and then the redness will go away and leave me with an arthritic type of pain in my wrists/hands. Anyway, so far I have tried voltaren which was helpful at higher doses, but not a great med to stay on long term. The new rheumatologist just sent me a message a few days ago. She had read that lidocaine has proven to be helpful in some cases. She had me try cutting a lidoderm patch and placing it on my wrists (palm side) where the majority of vessels enter the hand. I have used them 2 days and have not had any flares while they are on (you can only wear them for 12 hours on/12 hrs off). I have still gotten a few mild flares in the evening after I take them off. I'm wondering if anyone else has had any luck with using lidoderm patches or anything similar. It's interesting to see all of the options that people are trying.
I wish I could use the patches. I’m immune to lidocaine, Novocain and everything else in that class of drug. I’m glad you are getting help from it though. I also don’t have EM very severely and I also get the arthritic soreness in my hands, right near my wrists. I have EM worse in my soles of my feet and it’s spreading to my knees and the tops of my feet. I haven’t seen a rheumatologist yet but I see one on the 27th of this month. I hope they can help me like they did for you because all I’m on now is gabapentin and it’s not really helping. I heard that taking magnesium helps too. Haven’t tried it though. Keep me updated on anything else that helps you.
I never would have guessed using Lidoderm, since it is more of a numbing agent. I use Lidoderm cream instead of the patches for chronic back pain - I may have to suggest that my son put some on or around his ears (since that is where he gets flare ups). I'll let you know if it helps. Glad it is working for you!
This sounds interesting. I have had EM around the same time as you but it is in my feet, particularly bad in the left foot. I wonder if this is available in the U.K and will mention it next time I go to my hospital appointment.
Good luck.
Yes, I"m not sure exactly how the lidoderm works to control it but it helps! The Dr. said she read that lidocaine can be helpful to some people, so she suggested I give this a try. It gives my hands a "cool" sensation but my color and circulation seem to be fine. It's definitely worth asking about. I'm not sure about around the ears, exactly where you would place it, as it needs to be where the majority of blood supply enters the area. I would ask the Dr. first, but maybe it's worth a try for you.
Another thing I am doing is wearing "Arthritis gloves" when I'm working. (I do a lot of typing). It sounds like gloves would be hot, but actually they are just snug enough that they are suppose to help regulate circulation. I think they are somewhat helpful and actually feel really good. Just another tip. I'm excited to hear about what others are trying or finding helpful.
Yes I actually found some good diagrams online of the arteries connecting to the ear lobes, so it would be easy to apply the cream in these areas. It does make sense that it works because the lidoderm constricts the vessels. I am very optimistic about this and thank you again for the info! I will email my son's rheumatologist today! Covering the ears (like with ear muffs, head phones, a hat) increases symptoms for my son, unlike you with gloves.
Oh I'm really excited. Let me know what your son's rheumatologist says. How old is your son. I'm 44, so this started for me when I was 42.5 . I hate to hear about the kids that get this. Keep us posted.
I think the lidoderm also blocks some of the nerve responses, which cause the vessels to dilate in those of us with EM. I'm really hoping it will keep working. I'm excited about it.
I
I was given Lidoderm right away 12 yrs ago and it definitely reduces frequency of flares
Even though I’m immune to lidocaine I’ll ask my doctor about it and see if thei
there’s another route we could try like the lidocaine patches. Thank you so much for sharing all of your experiences.
He is 14. I have not heard back from his rheumatologist but I am completely comfortable letting him try this - I have tons of Lidoderm cream on hand for my chronic back pain. He put some on yesterday in the area directly in front of his ears and behind his ears. He knew it was working because he still felt hot in the face after showering but his ears did not. He did get another flare up at bed time, but not as severe as usual. So I think there may be some benefits to using it. Thank you again for the post and the info! Too bad he can't put patches on his ears because I think they might work a little better than the cream does!
Finally heard back from the rheumatologist. She was absolutely against using lidoderm. When I asked why, she just said "because too much might get absorbed in to the blood stream." Too much? I'm not gonna let him frost his ears with it! I thought this sounded like an uneducated excuse. She does not want to increase his procardia, but wants to do some more research. I told her I've been doing the research! This doctor came highly recommended by my son's pediatrician - she said she was "the smartest person I know." I'm not as impressed. I am probably going to start looking for an adult rheumatologist for him. She is a pediatric rheumatologist and although she is familiar with EM, she has not treated it regularly.
What a bummer to hear. I do suppose the amount should be regulated, but it seems like she could give you an appropriate dosage to try. The Rheumatologist I have seems like she is really open to trying different things. She made a list. Apparently she thought of this/or read of it after my visit, so it makes me feel good she is doing some research.
How frustrating. I know you want to do whatever is safest for your son. I would try to just get a second opinion on it.
Good luck you to and him!
Yes, you are right on! Thanks for the support.
Cowboy said:
What a bummer to hear. I do suppose the amount should be regulated, but it seems like she could give you an appropriate dosage to try. The Rheumatologist I have seems like she is really open to trying different things. She made a list. Apparently she thought of this/or read of it after my visit, so it makes me feel good she is doing some research.
How frustrating. I know you want to do whatever is safest for your son. I would try to just get a second opinion on it.
Good luck you to and him!
Thank you for the info! I did research the maximum lidocaine amts. as well and like you, I thought her concerns were unjustified. There is a warning regarding an ototoxic effect if the lidocaine is instilled into the middle ear - but it would take effort or a freak accident to get it to that depth if he is applying it to the area in front of and behind his ear. A few months ago I asked the rheumatologist if she would consider prescribing Neurontin, she said no that she had never heard of that as a treatment option. Really???? Then how is it that I have and I'm not a physician???? I'll see what she says when she calls back after "researching".At that point I'll decide if it's time to shop for a new rheumatologist. I like the idea of the compounding. But my guess is this doctor won't go for it.
Tizzy said:
Hi I have been told that the maximum lidocaine concentration to use is 5 percent . The research I looked at for my feet suggested there is no systemic absorption at these levels . Despite this doctors seem concerned about lidocaines effect on the heart ,particularly arythmia . This seems a contradiction when studies report little or no systemic absorption . There is one case of fatality - a medical student , prior to a procedure covered both her legs with the cream the wrapped them in plastic ! Not a scenario that anyone is likely to try . Maybe show her the studies and ask about putting it on the fleshy part of his ear .
Also there are compounding pharmacies who on prescription add ketamine , prilocain ,gabapentin and others ( up to 4 ingredients) They use a special base that breaks down the fatty layer in skin to allow drugs to be more effective - so go figure . I use on of these on my feet prescribed by my cardiologist and he won't increase the lidocaine but adds other stuff to calm the nerves in the skin. These combo creams are widely used and you can find info on the Internet , so maybe you can wave that info under her nose when you visit ! So frustrating but seems to be the patients that drive treatment forward or in this case the mothers! Good luck with your son - keep me posted!
Oh ! Mexilitne is oral lidocaine sometimes used in EM pain / again go figure!
Hi Cowboy,
Could you tell me your Drs name /clinic/city please. I im compiling a list of 'good' EM Drs for us.
Thanks
God bless
mads
Hi Cowboy
I am just picking up my prescription for Lidoderm patches today! I have been told to wear them at night and apparently the med is meant to hang around in your system a bit so helps during the day.
Best wishes
ajh
Awesome. I'm hoping they help. So funny how Drs are different. Mine says wear during the day, but I would do whatever your Dr said and then if it's not covering you enough, then go to day if they are ok with it.
Best of luck!!!!!
Cowboy