I am ET JAJ2+.
I take HU everyday - no aspirin . I’ve been taking ibuprofen since Friday for muscle inflammation. I can’t take a lot of pain meds so ibuprofen is the only one that works.
I get frequent muscle pain in my upper left back. Someone on fb has said we’re not allowed to take ibuprofen? Why not? I don’t take aspirin
I’m following out of curiosity. I have also struggled with muscle pain for years and now wonder if it is due to having ET.
I am also curious if ibuprofen is supposed to be avoided? Haven’t seen that before in my limited research
I expect the recommendation for caution with ibuprofen has to do with the increased bleeding risk when combining aspirin and ibuprofen. Since ibuprofen is also a "blood thinner" it does potentiate aspirin .
Avoid/Use Alternative
aspirin + ibuprofen
avoid aspirin >325 mg/day; otherwise, monitor bleeding s/sx, renal fxn; give ibuprofen dose >400 mg 8h before or at least 2-4h after low-dose aspirin ER: combo may incr. risk of GI ulceration, perforation, bleeding (incl. life-threatening), renal impairment, other adverse effects; ibuprofen may inhibit cardioprotective effect of low-dose aspirin (additive effects; possible competition for platelet binding sites)
online.epocrates.com/intera...
Do also be aware that back pain is a known adverse effect from HU. If the timing of when the back pain began was after you started HU, that would be something to discuss with your doc. Of course, back pain happens for a lot of different reasons. I have significant back pain that has nothing to do with meds. Thank good ness for a great massage therapist.
online.epocrates.com/drugs/...
Hi hunterMy pain is in one muscle in my upper back. It started about 8 weeks after starting HU in 2014. Don’t have pain in any other muscles , just this one area.
I don’t take aspirin as it made my hands bleed under the skin
That does sound like a muscle issue. I get something like that in my right rhomboid major muscle. I have learned from my massage therapist how all the muscle groups are interconnected. Where you feel the pain is not always where the problem is. I am fortunate to have a skilled massage therapist who keep the back pain manageable. I usually do not need analgesics or muscle relaxers if I stay on top of the massage therapy and stretching/exercise.
That hematoma does look like it would be a concern. Given such a strong reaction to the aspirin I am wondering if your doc ran a von Willebrand panel? Do you know what you prothrombin times look like? It is well known that when thrombocytosis is present we are also at risk for hemorrhage. The higher the platelets, the greater the risk of bleeding/bruising.
Hope you get it all sorted ASAP.
My platelets are 395-380
I take ibuprofen when needed but I’m concerned as to why you don’t take aspirin or an equivalent.
See reply to hunter with photo
What about using ibugel if it’s just one area? You can get different strengths. My hubby uses the 10% strength, which is quite good.
I have ET, and take 75mg dispersible aspirin. I have on very rare occasion taken ibuprofen for muscular/joint pain. I’m by no means endorsing this, as I know there is some potential risk; however, ibuprofen is a valuable anti inflammatory drug, and sometimes it’s the only drug that hits the target. I leave as much time as possible between taking both drugs, and again, I must stress this has been on very rare occasions.
As you’re not on aspirin I can’t see any issues though. If it’s causing you concern it’s probably best to discuss it with your haematology team.
Hi - I think as others have said, the concern is combining ibuprofen and aspirin - when I was first diagnosed I asked my MPN specialist about all OTC meds. He is fine with me taking occasional ibuprofen for pain/muscle soreness. He suggested that I take it anytime after 12:00 (as I take my low dose aspirin first thing in the morning). He said he would rather have me take ibuprofen vs acetaminophen as many of the first and second line meds for ET can be rough on the liver and he did not want the added potential burden of the acetaminophen as well.
Have you tried a regimen of stretches to relieve the pain? I find that daily stretches has helped a lot with muscle pain and work best if I do them at least every other day.
I had all sorts of back pain and disc damage after a career as a Midwife. I signed up for a “Forward to Health,” course at the local leisure centre using the gym equipment with minimum weights, and I swam a bit, and then I tried the Tai Chi, then the Pilates sessions and gentle Yoga as it was all included in the price.
The Pilates has worked wonders on my spine and posture. I have been able to stop all of the pain killers.
I look forward to returning to the centre when it feels safe after Covid.
I think the body can produce its own painkillers to some extent. Taking painkillers required higher and higher doses for less result.
What pain killers can I take when on HU? 
Should I skip aspirin after a covid vaccine?
Cramp Pains With Pegasys
Anti-inflammatory options
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