Just wanted share a good note and a tip for aspirin... I was diagnosed 2 years ago, and started baby aspirin after I started to feel like I couldn't do many activities I loved. I was having trouble walking the dog... my feet would feel a deep ache, swell, and have a cramp-like feeling. I couldn't run at all. I would stand in the creek to try to cool them off. After a day rock climbing, my hands would burn and tingle all evening/night, making it impossible to sleep. Etc. I'd been in tears more than once as things I was trying to keep my feet/body cool failed to work, and I felt like the things I enjoy doing were being taken away.
It took a while, but just daily low-dose aspirin did work for me. (Or at least, it reduced flares to a very manageable level.)
I had been under the impression that if aspirin worked, it would work quickly/immediately. That was not the case with me, I have to take it daily for several weeks before I notice a difference. Once it is working, however, I can skip a day or two a week w/o it causing a problem, I just seem to need a regular low dose in my system.
So far, I haven't seen any worsening of symptoms (as long as I take the aspirin regularly).
Hi sunshinetrees. I was exactly the same. Started taking a baby aspirin in anticipation of a long-haul flight and while I was away noticed a big improvement. That was Xmas 2012. About 5 weeks ago, freaked out by the disapproval of my GP and cardiologist “you do have to accept that you are markedly raising your stroke and GIB risk by continuing with aspirin” I stopped and the last two weeks have been just so miserable. I had simply forgotten how ghastly EM was before the aspirin:(
Ps I am in my 70s with a damaged heart,on blood thinners. That risk assessment doesn’t apply to you:)
Thank you so much for sharing this. I tried low dose aspirin for a brief period but quit after not seeing a difference because I too am on blood thinners like Nel and it is more dangerous for those on blood thinners. For me it was worth the risk if it helped but it didn't right away and I thought you would see results right away. I will talk with my doctor about giving this another go. I must stress for those reading this that even without the added risk of blood thinners EVERYONE should always check with your doctor before starting this or any other treatments.
I am so glad you have been helped and your EM is manageable now.
I assume you've all had complete blood counts to check for myeloproliferative causes of your EM? I was advised to take aspirin because my hematocrit and hemoglobin were elevated out of range. I thought it was nominally helpful. Simply drinking plenty of water seemed more helpful. I was given a phlebotomy last week and experienced a significant reduction in symptoms. I am an unusual case because I was anemic in 2013, had my Hb/HCT stabilize with oral iron, then surge out of range. My hematologist thinks reducing my hematocrit might resolve my EM, since my joint problems and EM have corresponded with the surge in my hematocrit.
Aspirin is an NSAID, in addition to an anticoagulant, so it may benefit as an anti-inflammatory. I found diclofenac (trade name "voltaren") very helpful when I first began experiencing symptoms. It is a prescription NSAID in the United States. Some countries it's sold OTC. Eventually it seemed to lose effectiveness as my symptoms worsened. I am now weening off it.
Yep. Just 81mg/day. That was my doctor's first recommended strategy. He sort of threw it out there as an after thought, however. I'm glad I gave it a long trial run and didn't give up on it sooner. I don't usually stick it out with meds if I don't see immediate results.
I know what you mean, Nel. Over winter, with colder temps, injuries preventing me from doing many of the things that trigger my flares, and being on Aleve for those injuries... I got concerned about doubling up on things that can cause bleeding and stopped taking the aspirin... I'll just say, it's nice to have forgotten how bad it was before the aspirin. =)
I'm pretty lucky that taking aspirin works with the majority of my health profile and that it works for me. Very grateful.
I figured, but thought i'd throw that out there just in case. Perhaps someone else will stumble across the thread one day and find the information useful. I wish there was an easy answer for your EM, Nel.
Thanks carterdk. I just wish there was a blood test which would show up the reason why each and every one of us has the stupid condition so we could all treat the causes and watch EM fade away. As my mother would say, ‘If wishes were horses beggars would ride’
Carter, is that something that would be tested as part of a routine physical or with ANA by a PCP? I haven't seen my full results, only had the call about the bad results (low Vit D, positive ANA, high cholesterol...), so I'm not sure what all was run.
When I mentioned that the aspirin was helping, my rheumatologist just sort of shrugged. As long as my symptoms were under control, he seemed happy. My last follow up, more than a year ago, he ordered no blood tests. But he was clearly more concerned with the Raynaud's and chillblains than my EM... Maybe you've seen my more recent post (http://forum.livingwitherythromelalgia.org/forum/topics/progression-underlying-conditions-prepping-for-appt), but I'm looking for advice on what tests I should ask for and what other conditions I may need to watch for. Thanks!
I first took it to avoid a DVT on a long flight and took it in the morning or when I remembered. After the discovery that it helped so much with my EM I always took it with my last snack of the day. No particular reason except that EM is so much worse at night. Aspirin hangs around in the body for quite a while so it probably makes no difference.
sunshinentrees, a CBC (complete blood count) is generally the very first test a doctor will order when investigating a problem. For instance, when I went to my doctor in 2013 with complaints of persistent fatigue, he ordered a CBC. If your doctor is ordering more specialized tests, like an antinuclear antibody (ANA) test, he/she has probably ordered a CBC at some point. If you're unsure, you should ask for a copy of your test results. That is generally a good idea regardless.
I've asked for copies, but my doctor's office seems to be having some serious administrative issues... they lost my appt, they failed to call in an Rx, etc. (Temp staff and an office move.) Hopefully I'll see what was tested and all the results soon-ish... and with enough time to request more blood work before my rheumy appt if it wasn't done.