Raised platelets and Eylea injections question for moderators or anyone with special knowledge

[Jelbea]

I suffer from a rare type of blood cancer in which my platelets are too high. They have been controlled during the last three years but recently have risen again.

During the last six years I have been having Eylea injections for macular degeneration in both eyes (somewhere about 60 injections altogether). My eyeslght has been well maintained on this as I can still read (with slight difficulty) down to the bottom of the chart.

I am due to have both eyes injected on Thursday and wonder if you can advise me if it is OK to go ahead with these.

As part of my blood cancer treatment I am on the blood thinner - Rivaroxaban - together with 75 mg aspirin on some days of the week along with my oral chemotherapy. This has been my treatment for almost three years.

I know there is always a certain degree of risk involved but would like some reassurance to go ahead.👍👍

[springcross]

Hi Jelbea. I think this is a question for your consultant ophthalmologist to be honest. Can you ring his/her secretary today (tomorrow is cutting it a bit fine I feel) at the clinic/eye hospital and ask if the question can be passed to the consultant so that you get your answer prior to Thursday? Good Luck.

[Jelbea in reply to springcross]

Hi springcross - Thank you so much for your prompt response. I have been able to get in touch with a member of my blood cancer team and they have confirmed that it will be OK for me to go ahead with my injections which is great news as I really need them at present.

Thanks again and Good Wishes

[springcross in reply to Jelbea]

Oh yes, that is great news, I hope all goes well. Thanks for the reply. x

[Blackroc]

Hi Jelbea. I have PV, on Hydroxycarbamide and Elequis. I have also been having eye injections (Lucentis and later Eyelea) since 2011. I’ve never been told there was any connection. You’re obviously doing very well on the injections. I’ve not been so lucky, though I have both Myopic CNV and ARMD.I hope all goes well on Thursday.

[Jelbea]

Hello Blackroc and thank you for your response. I am so sorry your eye injections have not been totally successful. I only have ARMD but am now type 2 diabetes so have to keep an eye on this as well. However, I have been getting Eylea injections since 2017 and have good distant vision but not close-up. I take hydroxy 500 mg daily but after being ill recently my platelets have risen and the hydroxy is being increased to double doses at the weekend. I also take aspirin on some days of the week with blood thinner.

It was because of the raised platelets and the fact that I am getting migraine auras every day recently that I was worried about getting the eye injections. However, I have been in touch with MPN team and they have assured me it will be OK to go ahead.

On a different note I see we share the same island - I am up North. Again a big thank you for writing to me and I send you all good wishes

[Bluerice]

I have ET. I've been on 1000 mg hydroxyurea daily for 14 years. This year I've started getting Avastin eye injections to treat radiation retinopathy from ocular melanoma treatment. I have noticed my platelets are starting to increase after being stable for over 12 years. At this time my medical oncologist & primary care physician are watching my platelets count closely. Good luck with your situation.

[Jelbea in reply to Bluerice]

Hi Bluerice - Thank you for your post. I see that you, like me, have ET and treated with HU. I take 500 Monday to Friday and 1000 Saturday and Sunday.

I have been having Eylea injections in both eyes for seven years and have had good results. In February I was admitted to hospital with a very severe reaction to trimethoprim give for a urinary tract infection. At that time I was taken off all my medication apart from HU and given other medications. It was thought (wrongly) that I had taken a heart attack. I had an angiogram which showed normal arteries and no blockages. Lond story short whilst I was in hospital my platelets started to rise (they had always been stable) and luckily I had an app with my MPN specialist just after I was discharged from the heart ward. She increased my HU to double dose at weekends and I am still on that dosage.

I think the messing up of my medications caused the platelets to rise and I was not too pleased. Someone had recorded in my hospital records that I had complained of chest and left arm pain when I was admitted. This had been put wrongly in my notes and caused me so much trouble and investigations which were quite unnecessary.

It was actually the Consultant Ophthalmologist at my macular clinic that discovered the wrong information had been put in my notes. You are unable to have eye injections within a year of heart attack or stroke. However, he was quite happy to give me the injections when the wrong information had been sorted out.

I am glad to hear that a good check is being kept on your situation and I do wish you well as you go forward. My platelets took since February to settle and I am hoping I shall be allowed to reduce HU again next month. Best Wishes