Went to a new MPN specialist last week. She did a blood smear which I hadn’t had in years. Apparently I have a small number of tear drop shaped red cells. This can be related to MF but after 2 BMBs in the past 2 years my diagnosis is still ET. Last BMB scored a 1 on the O-4 scale for fibrosis. I was wondering if this is also causing me to feel so incredibly tired where I need a nap pretty much everyday and have a sick headache also everyday. She didn’t think so. They checked my iron levels and they are on the low end of normal. I was told to increase my aspirin from 160 per day to either 240 or a full 320mg.
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George1976
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I have been using interferon for about 4 years. At the beginning of using interferon, until we reached the desired dose, I became anemic after using a high dose, and small amounts of teardrop RBC plus other abnormal shaped rbcs were observed in the blood slide(no abnormal rbcs befor that). As soon as we reduced the dose and started using it for 45mcg every two weeks , the anemia went away, the hemoglobin increased and abnormal RBCs were not seen. At the beginning of the diagnosis of my disease after i started using hydroxyurea, abnormal RBCs were also seen, but as soon as the dose was reduced, it returned to the normal(rbcs were completely normal on my initials blood test leading to ET diagnosis). I wanted to see if this happened to anyone else? In the meantime, I did a biopsy and no fibrosis was seen inside the bone marrow and diagnosis was ET but since then i‘ve been always concerned about those abnormal shaped rbcs
Suggest that you ask for clarification as teardrop shaped RBCs (dacryocytes) can be associated with a number of conditions, including fibrosis in the bone marrow, VIt B deficiency, and more.
Headaches and fatigue are known MPN symptoms that can occur regardless of platelet levels. Fatigue can be related to the overproduction of inflammatory cytokines. Headaches are a likely microvascular issue. It sounds like you have already increased you aspirin from the common 81mg qd to taking 2/day. You did not state whether you were taking the aspirin once or twice per day. Some find it more effective to take the aspirin bid since the half-life of aspirin is so short. Increasing the aspirin dose might help with the microvascular aspect of the headaches if that is the issue.
Suggest you also seek clarification of strategies to deal with the fatigue. Some find the cytoreductive medication help with fatigue, but not all do. Here is a bit of information of dealing with fatigue just in case you have not seen it.
Thanks Hunter for the link and video. I just started taking the aspirin twice a day, 81 in the morning and now another 160 before dinner. Hopefully it will begin to make a difference.
hi my Haematolygist at the Christies hospital tells me it’s nothing to worry about it’s the hydroxycarbamide that does that it’s so they can tell your taking it my GP rang after a blood test at the surgery I contacted my Haematolygist he explained that to me
But still interesting, my wife has MF and is on hydroxycarbamide and also Jakafi with the hope of removing hydroxycarbamide altogether. She has some teardrop RBCs and it will be interesting to see if they disappear in the next few months. As she is overseen by Christie's, we will ask them to check!
Morning George my red cell reports just said misshapen no specific shape and haematologist said not in high enough numbers for her to be interested.
But I started taking vitamin B12 which was on low end of normal and also didn’t interest my haematologist but from my point of view I have not felt so lethargic and also the constant hangover feeling headache is not there only occasionally when I feel very tired . My recent B12 result is midline in the normal range so I am responding to taking it orally. So maybe worth looking at . Feeling constantly so tired made many of the things I enjoy impossible so anything that helps is worth a try . L
Morning to you Tipsy. That’s what I was told, not enough of these cells to matter. My B12 has been pretty close to right in the middle and when I take more it makes my sick headaches worse. The headaches don’t actually hurt a lot, it’s more of a slightly dizzy very dull pain that includes a bit of nausea.
I have often seen tear drop cells on my blood reports over the last few years. Last December a bone marrow biopsy confirmed what I had suspected for some time, my PV had progressed to MF.
Yes I am Jak2 positive and I have been on rux since 2 years after my diagnosis. It was increased after the confirmation that I had progressed from PV to MF. I now take 15mg twice a day
Thanks Ainslie. I think you’re right. I coming around to realization that my sick feeling is probably just my blood condition getting a bit worse now that I’m 10 years into it. The 3 BMB reports over time make reference to me having signs of Primary MF but then they say if it was I would have more obvious signs of it now, 10 years later. I also need to get out and move around more and thankfully my ability to walk has at least for now improved a bit. So if I’m lucky a bit more aspirin and more exercise will help me feel better. And I did get a round of IVIG a few months ago so maybe that’s playing a role in here too with some improvement in my legs.
I have post ETMF. I have had teardrop cells for many years, but I’m wondering if you have pre-fibrotic MF since you said you’re already at fibrosis level one. I would even go for another opinion and take your results with you.
I’ve seen probably 7 MPN specialists in the past 4 years since I’ve developed some weird symptoms. Like Ainslie said, MPNs can give you headaches and make you tired. Plus I’m not getting any younger.
I dont think it is usually. I had a specialist years back that always did one. Seems to me the more way to get tested the better especially when you’ve already had the blood drawn.
I do have tear drop cells but my diagnosis is primary mylefibrosis but my fibrosis grade is really high maybe your not quite measuring high enough at present fatigue is very common I think we all suffer it in one way or another I can sleep for 12 hours straight get up and still feel exhausted unfortunately there’s not a lot that can be done I hope you get answers and I hope you feel better soon do you have an mpn specialist it can help massively
I remembered my hematologist told me abnormal shaped rbcs including teardrop shaped following the initial use of blood medicine such as hydroxy or interferon can be due to use of these medicines for first time with higher dose they can also cause temporary anemia which eliminates after adjusting dose
So if no other signs and symptoms apear and these blood test findings are temporary no need to worry
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