I have started to use Acetaminophen - essentially as a general purpose heat reducer - and have noticed some encouraging success. While it doesn't seem to impact my feet or knees that much, I've noticed a significant improvement in how the rest of my body feels (lower heat) and responds to internal heat generation. In general, I feel much better. It also has no noticeable side effects, although there are limitations as to daily dosage to avoid liver damage. I'm currently taking 2600 mg per day.
Has anyone else had good results from acetaminophen?
I've heard it was aspirin that helped, not acetaminophen but always worry about taking such a large dose. Isn't there a danger of bleeding?? Is it safe to take so much? Have you tried aspirin??
I'd love to hear from others as I'm still supposed to be leaving on Tues for Italy and am so worried about this current flare up I'm having. How long did it take to get results after you started?
I find things work for a while and then they stop. I was using the Ketamine and Amitrip and it was great. Now it causes burning. I don't get that!
I tried aspirin first. Like all NSAIDs that I've tried, aspirin caused water retention in me and so would help one part of my body that has EM but hurts another.
Acetaminophen is not an NSAID, it is used as a fever reducer. I notice improvement after about 30 minutes and it has been consistent, at least for the past week since I have been on it. Internet research suggests that 4000 mg per day is the maximum, however I think the medical profession is now changing that to 3000 mg per day as the suggested maximum with respect to liver toxicity.
I take 650 mg per dose every four hours, non-enteric coated, CVS brand.
Lynee said:
I've heard it was aspirin that helped, not acetaminophen but always worry about taking such a large dose. Isn't there a danger of bleeding?? Is it safe to take so much? Have you tried aspirin??
I'd love to hear from others as I'm still supposed to be leaving on Tues for Italy and am so worried about this current flare up I'm having. How long did it take to get results after you started?
I find things work for a while and then they stop. I was using the Ketamine and Amitrip and it was great. Now it causes burning. I don't get that!
I was on 300mg of aspirin 3x per day for 4 years and it never really did much for me, it thins the blood so when I’d get a nose bleed it was never ending!. I prefer dihydrocodeine you notice a difference.
With dihydrocodeine, do you notice any water retention?
Lauren said:
I was on 300mg of aspirin 3x per day for 4 years and it never really did much for me, it thins the blood so when I'd get a nose bleed it was never ending!. I prefer dihydrocodeine you notice a difference.
I have never tried acetaminophen but might start. I did notice an improvement since I have started antihistamines for my allergies, for 2 days my EM symptomes completely disappeared! I actually thought I had stumbled on a miracle cure:) however, the flare ups were back after 3 days
I have been given aspirin and gabapentin as medication until my next poointment but so far very litlle change in pain management. Good luk and thanks for sharing, I will try it.
Thank you for beginning this thread. I hadn’t thought of acetaminophen for EM, but do sometimes take it before bed if I’m achy, and I definitely get better sleep. Perhaps it’s helping the EM too.
With dihydrocodeine, do you notice any water retention?
Lauren said:
I was on 300mg of aspirin 3x per day for 4 years and it never really did much for me, it thins the blood so when I’d get a nose bleed it was never ending!. I prefer dihydrocodeine you notice a difference.
This is a really interesting discussion, I'm keeping a count of the number of people who say it helps. I am hoping to speak to my specialist in EM this week and I will ask her if there is a reason for this. Could people let me know if their EM is primary or secondary? That is often an important distinction in EM. For example, most people with EM are told to take aspirin, that only works on one of the three subsets of EM because it thins the blood.
I'm technically "Idiopathic" but probably primary, since I don't have anything else going on (that i know of).
starsmurf said:
This is a really interesting discussion, I'm keeping a count of the number of people who say it helps. I am hoping to speak to my specialist in EM this week and I will ask her if there is a reason for this. Could people let me know if their EM is primary or secondary? That is often an important distinction in EM. For example, most people with EM are told to take aspirin, that only works on one of the three subsets of EM because it thins the blood.
Idiopathic is Primary EM, it's just another name for it. Unfortunately a lot of people now think that Primary EM means the SCN9A gene inheritable form. Primary simply means that it is not caused by another disease. That's what the secondary means, that the EM is secondary to (caused by) another disease.
Don Jones said:
I'm technically "Idiopathic" but probably primary, since I don't have anything else going on (that i know of).
Yes, pls keep this discussion going. I'm pretty sure I'm also primary as there isn't anything else going on. (Except, perhaps short fiber neuropathy. But how can you tell the difference? They both have burnng, tingling symptoms )
I used Aspirin a while ago and it seemed to help but it's not good to take so much Aspirin every day.
Then I tried Acetominophen last week and I thought it was helping, but it stopped. I went back to Aspirin today and feel a little better. And I NEED to feel better as I'm trying to holiday now in Southern Italy and it's NOT easy with burning feet!
starsmurf said:
Don,
Idiopathic is Primary EM, it's just another name for it. Unfortunately a lot of people now think that Primary EM means the SCN9A gene inheritable form. Primary simply means that it is not caused by another disease. That's what the secondary means, that the EM is secondary to (caused by) another disease.
Don Jones said:
I'm technically "Idiopathic" but probably primary, since I don't have anything else going on (that i know of).
I’m a newbie so primary or secondary has not been determined.
starsmurf said:
This is a really interesting discussion, I’m keeping a count of the number of people who say it helps. I am hoping to speak to my specialist in EM this week and I will ask her if there is a reason for this. Could people let me know if their EM is primary or secondary? That is often an important distinction in EM. For example, most people with EM are told to take aspirin, that only works on one of the three subsets of EM because it thins the blood.
Re: acetaminophen. I take it we are talking good old paracetamol as it is known here. I quite often take it when flaring just hoping it will help. 2 x 500mg tablets. It might be just a 'placebo effect' of having taken something to help the condition, but I do think it helps a bit at times. So far Primary EM is my diagnosis, idiopathic late onset I would imagine. starsmurf said:
This is a really interesting discussion, I'm keeping a count of the number of people who say it helps. I am hoping to speak to my specialist in EM this week and I will ask her if there is a reason for this. Could people let me know if their EM is primary or secondary? That is often an important distinction in EM. For example, most people with EM are told to take aspirin, that only works on one of the three subsets of EM because it thins the blood.
I find regular aspirins work much better but it's not safe to take aspirin everyday, which is a shame and NOT fair since it helps me!
tillyp said:
Re: acetaminophen. I take it we are talking good old paracetamol as it is known here. I quite often take it when flaring just hoping it will help. 2 x 500mg tablets. It might be just a 'placebo effect' of having taken something to help the condition, but I do think it helps a bit at times. So far Primary EM is my diagnosis, idiopathic late onset I would imagine. starsmurf said:
This is a really interesting discussion, I'm keeping a count of the number of people who say it helps. I am hoping to speak to my specialist in EM this week and I will ask her if there is a reason for this. Could people let me know if their EM is primary or secondary? That is often an important distinction in EM. For example, most people with EM are told to take aspirin, that only works on one of the three subsets of EM because it thins the blood.
Who told you this? My neurologist for my EM had me on 3 aspirin every day for years? And it was 300mg as well as 30mg dihydrocodeine 3x a day AND Gabapentin 1200mg 3x a day. I don’t take aspirin anymore as there wasn’t a point it does nothing so I now take 2 30mg dihydrocodeine 3x a day. I’m only 17 and that much aspirin did nothing to me. My neurologist gets tablet info from a top EM prof down London who’s been dealing with EM patients for 30 years. So take it there’s no danger!
Lynee said:
I find regular aspirins work much better but it’s not safe to take aspirin everyday, which is a shame and NOT fair since it helps me!
tillyp said:
Re: acetaminophen. I take it we are talking good old paracetamol as it is known here. I quite often take it when flaring just hoping it will help. 2 x 500mg tablets. It might be just a ‘placebo effect’ of having taken something to help the condition, but I do think it helps a bit at times. So far Primary EM is my diagnosis, idiopathic late onset I would imagine. starsmurf said:
This is a really interesting discussion, I’m keeping a count of the number of people who say it helps. I am hoping to speak to my specialist in EM this week and I will ask her if there is a reason for this. Could people let me know if their EM is primary or secondary? That is often an important distinction in EM. For example, most people with EM are told to take aspirin, that only works on one of the three subsets of EM because it thins the blood.
I find that SO hard to believe. You can look online at side effects of aspirin and stomach bleeding is almost number one.
Aspirin is a blood thinner so it is not hard to understand this effect. I'm glad nothing happened to you but it's not for everyone. I need to check further before I go ahead on my own, but would LOVE the name of this Prof in London, if you could share it? Perhaps he's written some articles, etc that my dr's [Canada] could check. I didn't even know they knew of EM 30 years ago!!
Lauren said:
Who told you this? My neurologist for my EM had me on 3 aspirin every day for years? And it was 300mg as well as 30mg dihydrocodeine 3x a day AND Gabapentin 1200mg 3x a day. I don't take aspirin anymore as there wasn't a point it does nothing so I now take 2 30mg dihydrocodeine 3x a day. I'm only 17 and that much aspirin did nothing to me. My neurologist gets tablet info from a top EM prof down London who's been dealing with EM patients for 30 years. So take it there's no danger!
Lynee said:
I find regular aspirins work much better but it's not safe to take aspirin everyday, which is a shame and NOT fair since it helps me!
tillyp said:
Re: acetaminophen. I take it we are talking good old paracetamol as it is known here. I quite often take it when flaring just hoping it will help. 2 x 500mg tablets. It might be just a 'placebo effect' of having taken something to help the condition, but I do think it helps a bit at times. So far Primary EM is my diagnosis, idiopathic late onset I would imagine. starsmurf said:
This is a really interesting discussion, I'm keeping a count of the number of people who say it helps. I am hoping to speak to my specialist in EM this week and I will ask her if there is a reason for this. Could people let me know if their EM is primary or secondary? That is often an important distinction in EM. For example, most people with EM are told to take aspirin, that only works on one of the three subsets of EM because it thins the blood.
Aspirin would only be unsafe if your doctor has told you that it is unsafe for you. Check with them. If you have the type of EM that aspirin helps, you need to take it, as it means that your blood is a little bit too sticky, which aspirin will help with. The risk of a stomach bleed in taking the dose necessary to help EM is small, and you would be monitored for this. It's a shame that you're missing out on a good treatment.
A low dose of aspirin a day has been shown to help lower the risk of heart attacks and possibly some cancers. I know that aspirin is a good drug as I'm actually allergic to it and therefore think "great, I can't take it" every time another discovery of aspirin's potentional benefits is announced.
I have a wonderful doctor in Dundee who is a world expert on EM. Her name is Professor Jill J Belch.
While many doctors hadn't heard of EM 30 years ago, it was actually discovered in 1878 by Dr Silas Weir Mitchell, hence another old name for it, Mitchell's disease or Weir-Mitchell's disease. As it's so rare, doctors almost never see a patient while they're training.
