Haemoglobin level dropping, spleen scan, bone marrow biopsy

[Joetcalr]

Hi everyone, haemoglobin levels being relevant is a new thing to me, apparently they’ve been going down since February (seems to coincide with taking peg, could there be a connection?) and are now at 95, which I can see is low, but I can’t find any info on how low 95 is, I feel permanently tired and don’t often get more than about five hours sleep, but I did do a 15 mile walk a few weeks ago, haha must be like a normal person climbing Everest!I was rung by the haematologist who does bone marrow biopsies, to tell me that I need one of those to find out what’s going on, also a spleen scan. I’m really hoping this is not a precursor to getting a mylofibrosis diagnosis, the idea of which really scares me. I’m on my own too, so bit short of backup. I have 6 years ET, platelets 650. Any comments good or bad welcome. Many thanks Jo

[hunter5582]

"Hemoglobin less than 10 g/dL was observed in approximately 13% of COPEGUS and PEGASYS treated subjects in chronic hepatitis C clinical trial"accessdata.fda.gov/drugsatf...

Note this finding is for people being treated for hepatitis, which would be at the 180mcg dosing level, much higher than is used for MPNs.

A drop in HGB could be from a number of things, including iron deficiency (which can also elevate platelet levels). I would not assume this means progression to MF. It is a valid reason to do a BMB to figure out what is going on.

Hope you get answers soon.

[Joetcalr in reply to hunter5582]

Thanks Hunter, you’re right that I should wait and see what the biopsy says, I’m trying to get out of having one if I can cos it sounds painful. I noticed there’s a different way of measuring haemoglobin in the UK and US. i.e. in the UK lower levels are considered normal range.

Apparently there’s no problem with vitamins in my blood, they’re just not being used to make haemoglobin. I read through the link – what a read, but did see it warned of lung problems, I will talk to the haemo nurse about my permanent coughing situation. Thanks again Jo

[Hopetohelp]

They put me on peg to bring my haemoglobin down. How low it can go I am not sure. Hope you get it sorted

[Cja1956]

Hi, Jo,I don’t have so much knowledge as Hunter but I do have a lot of experience. I am post ET MF, having been diagnosed with ET Jaf2 in 2008 and MF in 2019. My hemoglobin was also dropping and my platelets were going up. I’ve had 3 BMBs and I feel they are very important as a part of the diagnostic process. Yes, they are painful, but over quickly and there are ways to mitigate the pain.

I also have had a chronic cough for years and last year my hematologist sent me to a pulmonologist and I found out I had sleep apnea and now I use a CPAP at night and my coughing is much improved.

I’ve never taken Pegasus so I can’t help you there.

Good luck with your upcoming tests. It’s good to know what is going on to get the proper treatment.

[Joetcalr in reply to Cja1956]

Hi Cja, thanks for your message I see your haemoglobin was dropping and platelets going up, as mine are.

Since you were diagnosed and presumably on different Medication have you felt that you had more energy? Best wishes Jo

[Cja1956 in reply to Joetcalr]

As the beginning, yes. My doctor changed my medications and started EPO injections. My hemoglobin at the time was about 8.7. I went for bloodwork every week for 4 months and if my hemoglobin dropped under 10.2, I got an injection. Eventually, my numbers stabilized and I was able to stop the injectionss. That was in 2019. I’ve been pretty stable ever since but lately, I’ve felt pretty drained physically. I just had my 3rd BMB, and fortunately, my bone marrow hasn’t changed much. I have an unusual case because my platelets are still pretty high, and all my Red blood cell counts are low. They say I’m not yet ready for a SCT. I never really feel energetic, but some days are better than others.I hope that answers your question. I take hydroxyurea and Fedratinib.

[Joetcalr]

Thanks yes, that's very helpful, I looked those things up, I hope I don't get to needing them. Good luck with it all.

[johoho]

Hiya Jo. I have PV, and while generally asymptomatic other that anaemia related fatigue. I now have an enlarged spleen. Like yours, my consultant wants to do a BMB. I too am anxious about progression, especially now I've asked the question here, everyone is talking MF! I wasn't expecting that to be honest. I've decided to step away from the forum and wait for my BMB results. Everything is crossed for you Jo. Keep them crossed for me. Jo x

[Joetcalr in reply to johoho]

Hi Jo! Not sure what's going on, my haemoglobin is creeping up again, now 103, tho wish energy would return. My spleen isn't enlarged. So I seem to have dodged the bmb for now. Good luck. Jo x