RED BLOOD CELLS

[AllEars]

Good afternoon,

Has any one out there seen their RED BLOOD CELL DISTRIBUTION WIDTH lower after taking Pegasys for a while? Ive successful been taking Pegasys for a couple of months now and I'm pleased with my platelets coming down from 1100 to 635 . I still get out of breath easily upon exercise. I think this is because of my RBC distribution width being 20….. I’m not getting enough oxygen!!!

Thanks for your feed back

All Ears

[Kinsale]

Hi AllEarsIt’s interesting that you ask re RDW. I’ve been on Pegasys for 4 years and my RDW has been fine but of late it’s slowly crept up to 15.1 in my last test. I have a blood test every 8 weeks so I’ll be interested to see what the next result is. Coincidentally my haemoglobin has been drifting down very slowly over the last 8 months to sit now at 130. Not sure if these are related. I see my haematologist in March so will discuss.

[hunter5582]

RDW is a measure of the range of sizes of your red blood cells. There are a number of things that can impact RDW. I have not seen PEG as a cause of alteration to RDW. PEG does reduce erythropoiesis, reducing the total number of RBCs. This is why it is used to treat PV/erythrocytosis. It also reduces thrombopoiesis, reducing the total number of platelets. This is why it is used to treat ET/thrombocytosis. Likewise with WBCs.

Here are a couple of good articles on RDW.

labs.selfdecode.com/blog/rd...

medlineplus.gov/lab-tests/r....

Really understanding what your results mean requires looking at more than a single value on your CBC. There is a broader context needed to interpret results. Here is a good video covering the basics.

youtube.com/watch?v=Xj_yE1p...(Not working as expected?)

Hope this helps to answer your question.

[AllEars in reply to hunter5582]

Hunter, thanks for the links, much appreciated.When i was first diagnosed with PV in 5/2019 at 72 i was pretty fit, routinely hiking 5 miles a day with lots of hills also all of my red bloods on my cbc were normal….

My bone BMB came in at 4%. My good hematologist did offer me Pegasys at the time but i refused, sure that i could control with diet …..

Unfortunately when covid hit in summer 2020 i lost control of my Hematocrit and for 5 months in a row i had phlebotomies, hence the high RBW and low MCV…. Thats when i was out of breath and stopped hiking up hills, bummer!!!

Saw a another hematologist at the same mayo hospital….. he said he would start taking Pegasys if it were him… my AB had i creased to 11% …. Being prescription free for my whole life i was really afraid of side effects…. He did recommend a keto diet…

For the next year of 2021 i was strictly keto

And it is very good at managing the Hematocrit…. Only 2 phlebotomies in one year…. The good news! However, unfortunately, my platelets were climbing and in late 2021 they reached 1100 w AB OF 20% 🥲, well my hematologist put the pressure on and insisted I make a choice of a medication..,. I picked Pegasys ( i had read your good report of no side effects) and was aware that it could change the course of this disease…..I started on 45mg and am now on 90mg…..I tolerate it super well… and last cbc platelets were down to 635….

We are very happy about this….

I’ve changed my exercise to swimming which is much easier for me, i can do 40, 25 yd laps in 1 hour…. Im happy about this.

Also im seriously considering selling my house at 4500 ft elevation… and moving to Sea level… perhaps Hawaii…,.

I think elevation did effect my Hematocrit adversely…..and i spent 3 months in Hawaii last summer (my best girl friend lives there)

And my Hematocrit loved it. Plus’s swimming in the ocean is very healthy compared to the pool….

But im still super bummed about this anemia!!!!

You do seem to think that with time my RED Blood Cells could come back in range?

Talk about a crash course in letting GO!!!

Thanks for letting me ramble on….

One moe thing

Dr Silver at weil in in Ny says the earlier the better starting interferon….

So in my case i wish i had started earlier and not been so afraid….. just my opinion…

Thanks again for your EAR!

Im All Ears

[hunter5582 in reply to AllEars]

Did RBC/HGB drop too low? Not sure about what all your numbers are but I am wondering about iron deficiency without anemia. That is the outcome of repeated phlebotomies. It controls the erythrocytosis by limiting the available iron to make RBCs bit does not make you anemic unless you overshoot the mark (happened to me)(my numbers did come back up over time). Unfortunately, the chronic iron deficiency can also have adverse effects. These include fatigue, loss of concentration and increased thrombocytosis (all happened to me). That is what lead to my decision to go on PEG.

While 4500 is not super high, it is true that living at higher elevations increases red blood cell production. I think your plan to move to a beach in Hawaii is definitely in your best interests for a host of reasons. Swimming in the ocean is a great way to exercise. I would add Qigong on the beach. I wonder is 66 is too old to learn to surf? 🙃

It sounds like you have a great attitude and plan to manage the PV. If you move to Hawaii, suggest you sponsor a MPN Patient Forum on the beach. Lots of us will come!!

[AllEars in reply to hunter5582]

What a great reply !!!Thank you! 🙏

[EPguy in reply to AllEars]

Your AB is rising quickly. Good choice to start INF. Have you also info on any other mutations?

[AllEars in reply to EPguy]

Thank you for your confidence!!!Yes im very glad i started the Pegasys, and yes it does seem rather aggressive.

Maybe my age? Don't know seems like everyone is different…i do like my shot days kind of a warm cozy feeling in the afternoon, i lay down and imagine the healing… like a meditation. I was so very scared to begin, snd now all seems fine!

Ciao…. All Ears

[AllEars in reply to EPguy]

Only Jak2 mutation 👍

[EPguy in reply to AllEars]

Single Jak2 is a good thing for INF response, but as usual only in general as each of us has different details.

[Hopetohelp in reply to hunter5582]

Great video

[Meatloaf9]

Hi, my RDW at my start of cytoreduction was about 15.0, it went up to 22.5 after a few months and is not down to about 13, that is after about another 3 months. But I am taking HU for PV, so I don't know how that relates to INF treatment. My MPN specialist said that was what he expected with the HU. My MCV and MCH also increased above reference and he said that was how he knew that the HU was working. I don't know how any of this relates to INF. Probably best to ask your hematologist. Best to you always.

[AllEars in reply to Meatloaf9]

Hey thanks Meatlof9,Thanks for sharing your experience….

It does give me hope,

That i will walk again!!!!

I am swimming for now …..

When your Rbw was 22 were you out of breath???

All ears

[EPguy in reply to AllEars]

Here is my RDW after I started HU. Quite similar to Meatloaf. I had no stand-out issues that changed at that time. I did feel clearly worse at the low point here, but all the other CBCs were at similar extremes at that point.

RDW

[AllEars in reply to EPguy]

Thanks for this….. seems like i need patience!And in the mean time enjoy the swimming, … and lose some weight!.

I have sn appointment with Angela Fleshman (sp)!At UCI in feb…. For an another point of view. 👍

[EPguy in reply to AllEars]

Note that my data is only for HU, but just to show that RDW seems sensitive to cytoreduction of at least that sort.

I spoke to Dr Fleischman recently regarding her open NAC trial. She is a top expert in inflammation so you're in good hands. You won't be a candidate for the trial since it is not accepting INF patients. But you could discuss NAC in general with her.

I have resumed taking it this week, and probably will do so for foreseeable future.

[Meatloaf9]

Hi AllEars, I do not remember having shortness of breath at any time thus far. I am PV first diagnosed with ET in 2018. My AB was 27 in 2018 and 50 in 3/21. I was on no treatment at that time. Glad you have been able to try interferon. I hope to try interferon starting sometime in 2022, it will depend on cost with a medicare drug plan, I have heard that besremi is very expensive even with a part D plan (3 to 7K per mo). Hope that the interferon works well and you can stop the phlebotomies, keep us informed how you do on interferon and if it lowers your AB. Did the docs at Mayo think that lowering your AB would affect your disease course?? My specialist at cleveland clinic said the jury was still out on that, seems like common sense to me that a lower AB would be good for you. Best to you always.

[AllEars in reply to Meatloaf9]

Hi again meatloaf…..for whats it worth i wish i had started Pegasys sooner!!! Super easy to tolerate….,for me.

Best wishes Meatloaf9!

[AllEars in reply to Meatloaf9]

It seems like everyone is different,!!!

All ears