Eye floaters

[mbr8076]

Greetings friends,

I was diagnosed in early 2018 with ET Jak2+ following a mild heart attack. Two months ago my MPN specialist increased Hydroxyurea from 5000 mg /week to 7000 mg/week due to platelet count of 800k and Hematocrit of 46.4 and Hemoglobin of 15.6. of course, I am questioning whether I have progressed to PV but have not had that discussion yet. I never had a BMB because the Hematologist/Oncologist at the time felt the mutation results were sufficient to diagnose ET. I think my allele burden may have been 10%. I keep records of all lab work and noticed in 2014 my platelets were 500k and Hemoglobin of 44.2 and Hematocrit of 15. I am thinking I may have been misdiagnosed unless PV also has high Hematocrit and Hemoglobin.

I am experiencing more fatigue, brain fog and hair loss but also started experiencing left eye floaters. I went to the optometrist and he stated it happens as we age. I researched a little and read that hydroxyurea could cause them. Has anyone experienced this?

Thank you,

Mbr8076

[hunter5582]

While the fatigue, brain fog and hair loss may be attributed to the HU, I have not heard of floaters being an adverse effect. I do experience floaters myself, but they are the result of ocular issues.

The diagnostic criteria for PV are all 3 major or 2 major and one minor criteria.

Major WHO criteria are as follows:

Hemoglobin > 16.5 g/dL in men and > 16 g/dL in women, or hematocrit > 49% in men and > 48% in women, or red cell mass > 25% above mean normal predicted value

Bone marrow biopsy showing hypercellularity for age with trilineage growth (panmyelosis) including prominent erythroid, granulocytic, and megakaryocytic proliferation with pleomorphic, mature megakaryocytes (differences in size)

Presence of JAK2V617F or JAK2 exon 12 mutation

The minor WHO criterion is as follows:

Serum erythropoietin level below the reference range for normal

It is understandable that you might be concerned that the ET is progressing but you do not appear to meet criteria. It is also understandable that you would be concerned about the HU adverse effects, particularly with the increased dose and already experiencing adverse effects.

Both of these issues would best be discussed with the MPN Specialist. You do have other treatment options should you find that the HU is not suitable.

Wishing you all the best.

[hall2]

I have had floaters in both eyes for years. It’s a condition called PVD and nothing to worry about.

[Wyebird]

I’ve had floaters for years. In my case they are not ET related. Funny though, until you mentioned it, I don’t think I’ve had any years either. I take Visionace religiously ever since it was recommended by the optician for Macular degeneration which I have.

[Fjdjdjdjd]

Hi - I have ET and I also get floaters but I also have terrible myopia which leads to issue with the vitreous part of the eye, or retinal issues. I don't think its related to the ET in my case, just bad luck

[Hopetohelp]

I have ET jak2 and on pegysus. Have had loads of floaters for years. A bit annoying but that’s all

[yanvil]

yes

[Thankfulone]

I have had floaters for years. Before being on hydroxy and now Rux. No connection for me.

[PhysAssist]

Hi mbr8076,

All of the above are true, BUT, if the floaters are new, I would suggest getting to see an ophthalmologist in addition to the optometrist.

As one of my best friends who is an OD [Doctor of Optometry] always says: "There's a reason that they [Ophthalmologists] are MD's and I'm not."

As a PA, I have the same philosophy.

Think about it, please- you only get 2 eyes, so it behooves you to thorough.

Best,

PA

[mbr8076 in reply to PhysAssist]

Hi PhysAssist,

Thank you for your reply. Honestly, I thought he would refer me to an ophthalmologist. I keep telling him that my rare blood cancer, ET or its treatment can cause eye issues. He did dilate my eyes and stated he did not see anything amiss. I mentioned to my husband today which is week and 1 day since they started that I was concerned. I do have a PPO so I will reach out and make an appointment with an ophthalmologist before I go on Medicare in 6 weeks

Thank you,

Mbr8076

[PhysAssist in reply to mbr8076]

Hi Mbr8076,

You're welcome, and I'm glad to hear that you're going to see them.

Have you done all of your pre-Medicare transition research- regarding insurers for Parts A, B, D, ad nauseum?

I have an appointment with a [health] insurance coordinator/broker for 2/2/24 to go over and set up my Medicare plan options, because my 65th is 3 months later.

Best,

PA

[mbr8076 in reply to PhysAssist]

Yes, PA! Just had a phone call with Medicare broker that helped my husband 6 months ago go through the same process and yes, ad nauseum🤪. I have an appointment early November to go through the options. My husband went with a Medicare Advantage at no monthly cost because he has no medical issues but I am different:/

Thank you, again, for your ophthalmology suggestion

[Ratton]

I have had floaters in both eyes since around 2015/16 - after had bowel cancer surgery - I didn't mention this when diagnosed with ET some 3/4 yrs ago ? It didn't occur to me (I say this because think have been walking around with ET for longer than was diagnosed? Previous GP didn't query why my blood was peculiar - it was my consultant who did bc surgery who noticed it and referred me to Haematologist.

Floaters are a nuisance- I also have dry eyes and use a lot of drops - have blepharitis for which I have been told use cortisone ointment by dermatologist eczema on my lash line -which started before covid!