I decided to take some Aspirin Sunday night. I took one tablet - 300mg at about 9pm.
After burning up on Sunday, today (Monday) I've noticed that I didn't really burn at all. Slight redness in the hands and feet but nothing really... definitely an improvement!
It will be almost 24hours and still no real burning...
I have some blood tests due at the end of the week. I had full bloods a couple of months ago and they were normal.
But does this mean I have or will develop a myeloproliferative disorder in the future? How many others have had this experience with Aspirin but are still idiopathic?
If anyone had noticed relief from Aspirin, I'd be very interested what other meds also worked for you because I can't stay on Aspirin.
My doc has said I could use Aspirin as a test only... not something he recommended using going forward (I have had a peptic ulcer previously)
I should really have called myself a Sandgroper as I am on the other side of the great OZ Land.
My husband has EM and the only thing that helps him is Aspirin and NSAIDs. He tried everything else with no effect or with serious side effects. Yes unfortunately aspirin can cause GI problems, hubby had a massive bleed last year because of taking aspirin. He still takes it but with Pantoprazole twice a day to protect his stomach lining. One has to weigh the benefits and side effects of medication. and this is what he is doing but he is much older than you so I guess for him it is either a slight improvement of his condition and danger of stomach ulcers/bleeding or not sleeping at all and suffering extreme pain.
Thanks for the reply. I'm originally a Sandgroper as well.
Yes I think the aspirin helps - I tried a half dose yesterday (150mg) and although I still had some redness and burning it was more mild. The next day my hands and feet continue to be white and not red again... there is some sense of underlying stiffness/pain but on the whole it seems to work.
I wonder how many people also experience aspirin benefits who are deemed idiopathic?
It's a little concerning that it seems to work and I can't take it on a daily basis (doc doesn't recommend it based on previous stomach issues)
Maggiebarb said:
Hello Ocker,
I should really have called myself a Sandgroper as I am on the other side of the great OZ Land.
My husband has EM and the only thing that helps him is Aspirin and NSAIDs. He tried everything else with no effect or with serious side effects. Yes unfortunately aspirin can cause GI problems, hubby had a massive bleed last year because of taking aspirin. He still takes it but with Pantoprazole twice a day to protect his stomach lining. One has to weigh the benefits and side effects of medication. and this is what he is doing but he is much older than you so I guess for him it is either a slight improvement of his condition and danger of stomach ulcers/bleeding or not sleeping at all and suffering extreme pain.
I've been told to get bloods every 12 months... seems a while, especially if there is a chance to have PV or ET...
My bloods have always come back normal so far. Last one was about 10% increase in platelets but still well within normal ranges... only had slightly high total protein and slightly elevated ESR. Doc told me not to worry.
Would be interested if anyone else on the site has a good response to aspirin, how long they have had EM and if they have PV or ET, how long it took to get a diagnosis after the initial symptoms of EM...
Hi, I have secondary erythromelalgia and told it is probably due to blood disorder although they never mention regular testing. I am in the process of being tested for MS tho so had loads of bloods done recently. My dr suggested using a low dose asprin and they do 75mg here in the uk, I used to take just one a day alongside my other meds. I started it at the same time as gabapentin so not sure if it made much of a difference.
I have secondary Erythromelalgia Primary Polycythemia Vera. I was diagnosed 10 yrs ago with both. I am 48. My symptoms began as a child. About the age of 12 I started putting my feet in ice water. I do take my aspirin at night. It does seem to help me. I also have IV hydration 2 times a week for the PPV I keep lotion beside my bed to put on at night. I also run cool water on my feet & put my feet on ice packs. I have been taking an aspirin for 20 yrs. u may get them to check your Vit D level. For some reason mine drops real low. When it does my Em flares up worse. I also take Vit D at night. God Bless.
I began taking one 75mg aspirin tablet daily 10 months ago to guard against a DVT on a Christmas flight to Australia. The difference it made to thenfrequency and severity of the flares was startling but of course raised concerns that I could be brewing a myeloproliferative disorder. I was duly investigated including a Jak2 test and a bone marrow biopsy, everything negative so that ruled out a MPD. I am having a difficult time of it at the moment as we go into Winter in the UK nd I would love to try a 300mg tablet to see if I get more relief but at my age, 71, even though I take a stomach protector, it doesn’t seem wise.
I began taking one 75mg aspirin tablet daily 10 months ago to guard against a DVT on a Christmas flight to Australia. The difference it made to thenfrequency and severity of the flares was startling but of course raised concerns that I could be brewing a myeloproliferative disorder. I was duly investigated including a Jak2 test and a bone marrow biopsy, everything negative so that ruled out a MPD. I am having a difficult time of it at the moment as we go into Winter in the UK nd I would love to try a 300mg tablet to see if I get more relief but at my age, 71, even though I take a stomach protector, it doesn't seem wise.
Hi Nel, I just want to mention that I have been taking Aspirin since May of this year. I started with 12 Aspirin a day, each one is 325 mg and then I reduced to 6 Aspirin a day. I am also taking 1 Prilosec a day to help reduce stomach problems from the aspirin (the aspirin is for fighting pericarditis). I am 68 years old and just want to let you know that I have no problems at all. The aspirin doesn't help with my EM symptoms at all. Good luck to all.
Hi Domina, thanks for that. I was 15 years on Indomethacin for osteoarthritis without problems but the doctor fretted every time I saw her that I was running a risk of stomach damage. I stopped taking it when I developed EM because, mysteriously, the constant ache in hands and feet diminished, I can only think because of the heat in my joints.
The trouble is we are all so very different with different primaries and our own body idiosyncracies. If I carry on with extreme difficulties at night I will try doubling up on the aspirin to see if it helps. I sometimes feel that EM is constantly evolving like a malignant virus trying to defeat my attempts to manage it.
All the best
Domina said:
Hi Nel, I just want to mention that I have been taking Aspirin since May of this year. I started with 12 Aspirin a day, each one is 325 mg and then I reduced to 6 Aspirin a day. I am also taking 1 Prilosec a day to help reduce stomach problems from the aspirin (the aspirin is for fighting pericarditis). I am 68 years old and just want to let you know that I have no problems at all. The aspirin doesn’t help with my EM symptoms at all. Good luck to all.
when I was first diagnosed, about 5 months after diagnosed, the doctors gave me aspirin and it helped a lot. they say that with erythromelalgia you also develop polyenemia( I'm not sure if that's the right word). it means that we have a lot of "blood" or something like that. the aspirin did help. but the doctors urged me to eat a lot of iron, being that I was taking a blood thinner. I don't take aspirin any more though. I've found ways to manage my condition, like staying AWAY FORM HEAT. staying away from heat is my goal always haha
Those people who can stay away from heat and that helps are still very lucky. We have just ordered another air conditioner for my husband's little study, where he spends all his days and most nights. He has to constantly keep his feet on ice and now it seems the same is happening to his hands. He takes an aspirin 300mg with breakfast and NSAID (meloxicam) with his dinner and he sees a slight improvement after each dose. Otherwise it is the 8th year of his condition and it is getting worse despite all treatments and false hopes :(.
I recently saw a dermatologist. He read in his medical books that aspirin would help EM. I find that taking Source Naturals Activated Quercetin, which contains 1g quercetin, 3mg bromelain, 600 mg Vitamin C and 49 mg magnesium per 3 caps helps. I only take one at a time. If after a few hours if I'm still burning I take another one. I also take aspirin. That seems to help.
I'm in the same boat as you - told to stay away from the Aspirin because of previous stomach issues but it seems to help a lot. I have been taking a baby aspirin (100mg) each day.
I have been taken 12 (325 mg each) Aspirin a day for 3 months and 8 of the same for the past 5 months to battle pericarditis. So far I am doing o.k. by taking a Prilosec once a day. (Aspirin doesn't help me with EM).