Results from hematologist

[Cja1956]

Hello, all. Yesterday I had my six week check up with my hematologist. He had taken me off of hydroxyurea last time because of anemia. I was just taking Jakafi and baby aspirin as I have PV. My platelets stayed the same, 668,000, but my rdw has increased to 30.4, which seems really high to me. My HGB is about the same at 9.6. So now he is putting me on anagrelide. He still doesn’t want me to take an iron supplement. I read that a high RDW causes anemia. I’m not sure if he is doing the right thing. I’m grateful for any thoughts on this.

[charl17]

HU causes the average red blood cell size to increase quite a bit. It takes several months to turn over your red blood cells. Discontinuing HU would eventually lead to smaller red blood cells. A high RDW in your case could be caused by a mixture of HU blood cells and post-HU blood cells. This sounds like an expected phenomenon resulting from the change in your medication.

[Cja1956 in reply to charl17]

Thanks. That was very encouraging.

[socrates_8]

Hey Cja...

I am a tad confused...

So are you taking HU & Jakafi, and aspirin at the present? Were you taking HU, and then moved to Jakafi, or Jakafi and then HU? Are your Baby Aspirin, 'Enteric-Coated'? If not please do change them to 'Enteric-Coated'.

Aspirin 'Uncoated' is known to cause all sorts of issues with internal bleeding...

Jakaf, (Ruxolitinib), is what is called an'Immunosuppressive'. In other words, it is designed to stem the over abundance, or Proliferation of all the Blood Cells.

It is therefore also a contributing cause to any one taking it to having anaemia, in my view...

I am also taking Jakafi, and invariably, all of my Bloods over a monthly observation period do go Up & Down, much like a Roller-Coaster... And I am also anaemic most of the time... So you can better understand what Anaemia is and why it causes fatigue in the way that does please watch this short YouTube:

mpn-mate.com/ – Scroll Down to the YOUTube...

In the view of the medical fraternity, a single FBC test is not a good indicator of what a person's bloods might be doing, and often they try to send the 'Trending'. However, that does not mean any blood test should ever be completely ignored either...

Best to write down all of your questions before your next Haematologist appointment, and ask specifically for their answers from your doctors.

If you are concerned that they might know have all of the knowledge required to to treat you, ASK others here... where? You might find a better alternative...

I am based in Australia, and we have veryfew MPN specialists indeed, so I am not much use in that department.

Best wishes

Steve

(Sydney)

[Cja1956 in reply to socrates_8]

Hi, Steve, I just reread my post and you’re right. It’s a bit confusing. I was taking hu and low dose aspirin for 11 years for ET. My doctor added jakafi about 3 years ago when I progressed to PV. I developed anemia about 6 months ago. My last check -up my platelets went down to normal and he took me off the hu because he thought it was affecting my anemia. Anyway, I’m nervous about taking anagrelide now because I tried it years ago and the side effects were awful. But my doctor wants me to try it again. I do have an appointment with an mpn specialist in a few weeks. I’ve never gotten a second opinion so I’m sure it will be interesting.

Thanks so much for your information. I’m going to watch that video.

All the best,

Cindy

PS I hope I didn’t confuse you even more.😏

[socrates_8 in reply to Cja1956]

Hey Cindy...

No, not at all... You cleared all of that up very nicely, thank you...

Yes, it sounds like it might be worth just holding out a little longer until you see the MPN Specialist.

Cindy, before you go there however, you might find it very useful to start writing out a complete 'List' of ALL your questions.

Specialists are a lot like computers, in my view... And they can ONLY provide succinct answers to succinct questions. Hence, ALWAYS try to be very specific about the information you wish to learn more about...

Please don't try or expect them to answer a dozen questions correctly in one short consultation, rather just start with Two or Three at a time, for each visit I mean...

Some specialists & GPs, (many in my view...), might not know the answers. However, unless you are being very specific, that will also be extremely difficult to ascertain too...

Works for me...

Cindy, what we all want & really need is a medical team that understands, and is able to properly treat our MPN condition. It is imperative we find the right one, for each of us...

Best wishes...

Steve

PS. Yes, please do watch the Video on Anaemia, because it explains how it causes or contributes to our Anaemia, and our fatigue as a direct result etc...

[Wyebird]

My heamoglobin hovers around 105. My ferritin is high. My MPN specialist wouldn't give me iron either because of the high ferritin. It can be dangerous.

I am on it now because my iron readings indicate another possible illness. So it’s for a trial period only. I too have been put on anagrelide. I was told that it could help my hg level. It hasn’t hence the on going investigation.

It might help you though. If not ask if you could have your iron levels checked. Keep me posted.

[Cja1956 in reply to Wyebird]

Thanks for your reply, Wyebird. I hope they get to the bottom of it. It’s so frustrating to have to wait for a diagnosis. My doctor thought raising my dosage of jakafi would help my anemia but it hasn’t. I’m starting my anagrelide today so we’ll see what happens. Good luck to you. Let us know what they say.

[Wyebird in reply to Cja1956]

Thank you.

[Wyebird in reply to Cja1956]

Oh bye the way can I ask what does you are on? 1 a day wasn’t good enough for me so it was increased to 2. After approx 3 weeks I was light headed and dropped to 1 a day again.

It then had to go up to 10 a day.

Funnily enough I can’t take the extra 3 tablets on consecutive days. So please take heed don’t get despondent if it takes time for you to get used to anagrelide.

Keep me informed x

[Cja1956 in reply to Wyebird]

So he’s starting me off at .5 mg every other day and wants to see me again in three weeks. This is in addition to the jakafi and baby aspirin I’ve been taking for a while. Thanks so much for your encouraging words. I’ll let you know what happens.

[Wyebird in reply to Cja1956]

I’m afraid I know little about Jakifi but starting with a low dose of anagrelide is good. I’m responding so well

I’ve dropped two hydroxicarbomide a week ( was on 17 in addition to anagrelide . ) possibility I can drop another. In clinic on Tuesday. I ll find out then.

[Cja1956 in reply to Wyebird]

So glad it’s working out for you. Let me know what happens on Tuesday.

[Wyebird in reply to Cja1956]

I will x

[Boriqua]

Hey Cja, I have myelofibrosis since 2014, initially was on low dose aspirin to prevent a blood clot with the extremely high platelets, then started jakafi in 2017 till 2019 when it stopped working for me. I got a second opinion and always research from reliable sources, now I am on a study medicine called navitoclax ABT- 263 it is helping, but leaving it alone and going with Fedratinib. My advice hang in there they may need to adjust your dosage cause it's continually changing, red cells go down some white cells go up some, and your platelets should go down. My advice Jakafi and aspirin and give it some time, good luck.

[Cja1956 in reply to Boriqua]

Thanks, Boriqua. With much trepidation, I’m starting my anagrelide today. Hopefully, my body will tolerate it better than last time. I go for my second opinion in about 3 weeks.

[Otterfield]

I was on Anagrelide alone for the first couple of years after ET diagnosis. The side effects, palpitations and severe headaches, were dreadful at first, but the headaches stopped after a few weeks and I was able to control the palpitations by spreading the dose throughout the day. You may well get lucky as I did too.

Good luck

[Rachelthepotter]

Hi. It’s a bit of a nightmare working out what causes what: but when I started on ruxolitinib ( hey, my spell checker just corrected my original misspelling of rux: now that's a milestone I could have done without) I was warned it might push my red blood cell count down but that that the count would come back up.

It did make me anaemic, didn’t bounce back, but EPO injections now keep it up.

Best wishes

Rachel