Anemia on pegasys ET

[Joetcalr]

Been on peg 19 months now, it's worked a bit re platelets, 700 tho rising again. , but my Haemoglobin is now 83 (that's 8.3 in US I think). So I feel very tired. Has anyone any advice for transitioning back to hydroxy 😕 or switching to half and half? Many thanks Jo

[Johan2021]

Hi joe! Did you get anemia after atarting whit meds? I am trying to figure out why i am anemic. Have you done a bmb recently? Hope you are ok!

[Joetcalr in reply to Johan2021]

I'm ok, tho worried about the Hb going down, makes me very tired. Yes I've been getting more anemic over the last 16 months, before that I don't know , wasn't given results. I've not had a bmb so far. Thanks Jo

[Johan2021 in reply to Joetcalr]

Ok. Are you getting one? What does your heam say?

[Joetcalr in reply to Johan2021]

He wanted me to have a bmb 6 months ago, I wasn't keen, then it seemed to become clear that lower frequency of injections linked to Hb stopping going down, sorry not explained that v well!

[Johan2021 in reply to Joetcalr]

Ok! I think i understand!

[Hopetohelp]

My haematologist was encouraging me to include low dose hydroxy in with my weekly dose of 65mcg peg so it is possible. I didn’t actually do it though as the peg started to do it’s job eventually

[Joetcalr in reply to Hopetohelp]

Thanks, that's useful to know. That's slightly higher peg than I had, how long did it take to work?

[Hopetohelp in reply to Joetcalr]

One year, but it didn’t help that I stored the peg in the bottom of the fridge where it was too cold. As soon as I moved it up where it sits at 5 degrees my figures started to come down ( I bought a couple of good thermometers and now have my peg surrounded by thermometer guards😂).

[Joetcalr in reply to Hopetohelp]

Interesting! Mine's already at the top of the fridge...

[hunter5582]

Hydroxy has anemia as a known adverse effect. Not sure that adding/switching would help the situation. Have you checked your iron levels? Anemia can have multiple causes, with iron deficiency being a common one. There are other potential issues. Suggest a complete evaluation, including nutritional evaluation might yield some answers..mayoclinic.org/diseases-con...

[Joetcalr in reply to hunter5582]

Thanks Hunter, I've had tests for any iron/vit deficiency, no lack there, also tested for thyroid which is ok. I'm back to my belief that it's been gradually brought on by peg. Maybe because I'm calr? I read somewhere that calr doesn't respond as well to peg, anyone else with calr had a problem with pegasys?

[ciye in reply to Joetcalr]

I have been I peg for over a year very little change in platlets. Dr wants me to add hu to peg not too keen on the side effects. I have et with mpl driver

[Joetcalr in reply to ciye]

O dear ciye, sounds like we're in the same boat! I'll be interested to hear about your progress. Thanks

[hunter5582 in reply to Joetcalr]

Seems like PEG as a cause is a reasonable theory then. Since anemia (severe) is a contraindication for HU, I would wonder about other options like anagrelide and ruxolitinib. Perhaps a clinical trial for something like Bomedemstat if you are willing to try that. Definitely something to review with a MPN Specialist who is more likely to be aware of unusual side effects from the various med used to treat MPNs.

Hope you get this sorted soon. Please do let us know what you learn.

[Joetcalr in reply to hunter5582]

Thanks for that info Hunter, I've looked those up so feel better informed if the haemo mentions them. Right now I feel resigned to going back on hydroxy, despite all the nosebleed problems, at least I didn't feel so down as on peg. Cheers Jo

[mhos61]

What does your healthcare team have to say about your anaemia? Have they checked your iron levels or suggested a bone marrow biopsy for instance?

If you’re not seeing an MPN Specialist I would advise you start there.

[Joetcalr]

Thanks mhos, I've more blood tests and a phone call with the haemo next week. He is a specialist, but I'm kind of unsure how knowledgeable he is, not been in the job that long.I feel responsible for these problems cos I asked to shift to Peg, not thinking I could feel even worse than on hydroxy argh! Jo

[mhos61]

Some of us get lucky with the first meds we try, whereas for others it’s a bit of trial and error. I was fortunate and got lucky the first time with Hydrea.

I really do think it’s in your best interest to have the input of an MPN Specialist at this stage. They will be best placed to determine the cause of your low haemoglobin levels. run any appropriate tests and depending on the results collaborate with you to devise the best treatment plan going forward.

You can ask either ask your haematologist or GP to refer you to an MPN Specialist for a second opinion or opt for ‘shared care.’ I requested the latter option recently through my local haematologist, and I am really glad that I did.

There are other options with regards to treatment with some in the pipeline too. Also, it’s important to remember Pegasys may not be the culprit for your symptoms, it may well be you need an increase in the dose to bring the platelets down. But that’s why I think it’s vital to consult with an MPN Specialist.

[Otterfield]

I'm not surprised you're tired - 83 is pretty low. Do try to see an MPN specialist and if you are offered a BMB, I would urge you to have it as it can give a clear picture of what's going on. They're not pleasant but over quickly.

[Cja1956]

I would really suggest you get the BMB. I agree with Otterfield, 8.3 is pretty low. I have post Et Mf, which I found out after I had my second BMB. My Hgb was 8.7 at the time. You need to find an MPN specialist who will take steps to increase your hemoglobin. My doctor gave me weekly EPO injections, if my hemoglobin was below 10.2. After 4 1/2 months, my numbers stabilized and I haven’t had to take an injection in two years.I’ve never been on Peg so I can’t advise you on that.

I wish you well.

Cindy

[Meatloaf9]

Hi, sorry you are not doing well. As others have already posted, I think it would be in your best interest to see your heme or a mpn specialist and you should probably have the BMB done. I had one done by a hematologist with a lot of experience and it was painless. Had only local. I think it is the only way to know exactly what is going on in your bone marrow. Best to you.

[Wyebird]

Oh 8.3 I would find intolerable. My prolonged lowest 93.Is this in the rise? I have met someone who took both

[Wyebird]

Sorry I should add I’m on Peg and my haemoglobin has risen 93-105. For the last 12 weeks I’ve been on a pre diabetic diet. The haemoglobin has risen to 115. Diet or Peg?I do hope to get good results soon

[Joetcalr in reply to Wyebird]

Thanks Wyebird, I can feel I have more energy that a week ago, but more Peg due next week😕 My diet is fairly close to pre diabetic, apart from some meat, and I love potatoes, will try and cut back on the spuds!

[Wyebird in reply to Joetcalr]

Haha no need if healthy weight. I now eat loads more salad, brown bread and cook with100%vergin organic olive oil or rap seed. Lol my soon to have repeat diabetic blood test will be the judge🥴

It took months for my body not to have a reaction from jab.

Really hoping Peg works for you

[Joetcalr in reply to Wyebird]

Yes, I'm a healthy weight, Mediterranean diet suits me,