Secondary Erythromelalgia

Hello everyone,

I wanted to ask if anyone with secondary E.M is on aspirin therapy?

And is it giving you relief from pain?

I ll have to take small doses of aspirin cause it rises my Uric Acid levels, causing gout.

I AM NOT FAMILIAR WITH 'SECONDARY' EM, BUT I DO TAKE ASA DAILY. I RECALL THAT WHEN I STARTED TAKING IT I FELT MUCH LESS PAIN. SUPPOSE THAT IS NOW MY 'NORMAL' AND I DO NOT REALIZE IT.

I take 2 baby aspirin, twice a day. This does help.

Yes and yes!

I've tried taking aspirin, but it did jack squat. That's the problem; it seems to help out some and not others. Give it a shot, that's the only way to know.

When I first realised I had EM I tried taking aspirin and gave up after a few days when I decided my stinging rash was due to taking painkillers. Two years later, in December 2012 I began taking one 75mg tablet of aspirin daily to ward off a DVT on a long flight. I was then away in a warm climate for three weeks and put my dramatic reduction in flares and pain down to where I was. Now I have been home for three weeks and am astonished to find the improvement has continued though I am finding my Raynauds considerably worse and needing to wear socks and shoes. I don’t know if I have secondary or not but if this improvement continues then I suppose I must have . At the moment it feels too good to be true!

Aspirin therapy did not help my pain/flares. I had a huge improvement when I started Claritin however. I got that tip from someone else and was so glad I came across that information. Everyone is different so it may not be right for you but it is easily accessible and inexpensive and I was willing to try anything. She said it needed to specifically be "loratadine" the ingredient in Claritin. I knew within twenty minutes that it helped me. My flares are now (almost) completely controlled during the day though I do still have some issues at night. What works for one doesn't necessarily work for another so unfortunately it is "trial and error" until you find something that helps you, I wish you luck finding something that gives you some relief.

Hi there,

I have secondary EM. I tried aspirin therapy for a couple of months and it did not give me any relief unfortunately.

Hang in there ;)

Andrea

Aspirin dilutes blood, so it helps circulation. Considering that it should be helpful in EM and in Raynaud's too. On the other side, the pain in EM is sometimes that bad that the effect is just a lil or not noticeable at all.

If you dont have problems with blood clotting, aspirin cant make any harm, so try and you will see. Btw dont expect effect the next day, give it some time. xoxo, Liz

I believe I have primary EM but am still waiting for
Confirmation. I tried baby aspirine but found it actually
made it worse… But as no one treat ent works for
everyone with EM it’s certainly worth a try!
Good luck !

aspirin helped me at first for about 2 weeks than it worsened again. my flares became infrequent during that time and I was even able to take comfortable showers again. however since it didn’t work for long I am still looking for long lasting relief.

Thank you all for your quick responses. :D



liz said:

Aspirin dilutes blood, so it helps circulation. Considering that it should be helpful in EM and in Raynaud's too. On the other side, the pain in EM is sometimes that bad that the effect is just a lil or not noticeable at all.

If you dont have problems with blood clotting, aspirin cant make any harm, so try and you will see. Btw dont expect effect the next day, give it some time. xoxo, Liz

aspirin 81 mg @4 TABS A DAY IS EQUAL TO ONE ADULT 324MG. TAblet...which is what I READ IN DR.;S BOOK WHEN I WAS FIRST DIAGNOSED,,,IT SAID 300 TO 400 MG, A DAY. ASA DOES MANY THING SUCH AS DECREASE ELEVATED TEMPERATURE, RELIEVE PAIN OR 'thin" the blood. I WAS TAKING COUMADIN AND ASA AND HAD NOSEBLEEDS.WENT OFF COUMADIN AS DR. SAID ASA MAKES PLATELETS "SLICKER" AND THUS IS MORES EFFECTIVE WITH EM WHEREAS COUMAADIN NEVER WOULD HELP, WE APPARENTLY GROW MORE VASCULAR SYSTEMS AND NERVES IN PLACES OUR BODY SAYS NEEDS MORE BLOOD. I TRY NOT TO LET ANY PART OF MY BODY GET TO FEELING COLD. I EVEN WEAR A SHIRT SWIMMING [100%POLYSTER]. I DON'T WANT MY BODY CALLING FOR MORE VEINS, ETC TO HAPPEN BECAUSE OF FEELING COLD SOMEWHERE SO THAT MY BODY CALLS FOR MORE BLOOD TO BE DELIVERED AND THUS MORE VEINS/NERVES. THE NERVES IS THE ROOT OF TTHE PAIN IS WHAT I IMAGINE. THIS COLDNESS I FEEL THIS WINYER IS NEW 4 ME. CLAR

Hi Tulilou

I was wondering if your were diagnosed with Primary E.M or Secondary E.M by the doctor?

Happy Valentines Day btw. :D


Tullilou said:

I take 2 baby aspirin, twice a day. This does help.

Dear Norah,

I'm curious to know how much Claritin your take per day. My current carbamazepine trial is not very promising so I am looking for other options.

Thanks and Greets,

Ben

Norahs said:

Aspirin therapy did not help my pain/flares. I had a huge improvement when I started Claritin however. I got that tip from someone else and was so glad I came across that information. Everyone is different so it may not be right for you but it is easily accessible and inexpensive and I was willing to try anything. She said it needed to specifically be "loratadine" the ingredient in Claritin. I knew within twenty minutes that it helped me. My flares are now (almost) completely controlled during the day though I do still have some issues at night. What works for one doesn't necessarily work for another so unfortunately it is "trial and error" until you find something that helps you, I wish you luck finding something that gives you some relief.

Dear Ben,

Antihistamine therapy is usually a fairly heavy dose and therefore under medical supervision . As Norahs says, loratadine tends to be favoured as a standalone.To elaborate on a previous discussion , I take a 3 stepwise treatment of Leukotriene modifiers- montelukast, H1 antihistamines- loratadine, H2 antihistamines - ranitidine My dermatologist took a skin biopsy(while active/flaring) in order to decide on the most appropriate way forward .

Have attached a histamine article about the 3 stepwise approach for chronic urticaria(heat intolerance), which better explains management and patient education.

Have also attached previous discussions on this topic with research uploaded.

God bless

mads

http://www.uptodate.com/contents/chronic-urticaria-standard-management-and-patient-education

http://www.livingwitherythromelalgia.org/forum/topics/revisiting-th...

http://www.livingwitherythromelalgia.org/forum/topics/interesting-r...

http://www.livingwitherythromelalgia.org/forum/topics/important-inf...

I take just 75mg a day of aspirin a day. Not allowed to take any more because I am on a hefty dose of warfarin. It doesn’t stop flares or burning but reduced the swelling to a minimum and therefore I feel reduces damage to the skin and makes walking easier. I also take cetirizine and I think that helps too.