ET and Eylea injections for macular degeneration

[Jelbea]

I have been treated for ET for almost three years very successfully with 500 mg. daily hydroxycarbamide, 20 mg daily Rivaroxaban and 75 mg aspirin on some days of the week.

Recently I had an extremely bad reaction to the antibiotic Trimethoprim where after three days of the course I developed migraine with aura headaches and extremely severe pain - so much so that when admitted through A & E it was thought I might have a stroke, heart attack and aseptic meningitis. After nine days and very many investigations including angiography (completely normal) the only abnormality which could be found was slightly raised troponin levels.

I was in a cardiology department and did ask that they liaise with my MPN specialist in another hospital. They said they would but did not. I do not know if my platelet count was found to be up when I was in cardiology but I assume it was. Normally my platelets are around 350 - 430,000 level but yesterday were 550,000 and my hydroxycarbamide is being increased to deal with this.

I have been having Eylea injections into both eyes for the past six years (approx. 60 in all) for macular degeneration and my eyesight has been very well preserved. I am due to get both eyes injected on Thursday and I am not sure how safe this is with the raised platelets. I saw a Consultant Ophthalmologist last Thursday and he felt it was OK to proceed with the injections in spite of the slightly raised troponin. None of my tests showed evidence of a heart attack. He did not know then of my raised platelets so I am not sure where I stand.

Can anyone of this site or moderating the site give any sound advice to me? My eyes are in need of the injections but obviously any risk has to be taken into account. Of course I know there is a risk every time I get an injection but so far it has been good.

Thank you

[hunter5582]

Sorry to hear about the recent struggles. Hope you are feeling better soon.

Given what you describe, having reactive thrombocytosis is not a surprise. I would suggest that you get a copy of all of your labs while you were in the hospital to see what the actual course of the reaction actually was. This will better inform your decision making.

The best answer to your question would come from a MPN Specialist who follows your case. You really need case-specific advice about your situation.

Generally speaking, a rise in platelet levels to 550 from your typical baseline on treatment with a known cause for reactive thrombocytosis would not be a significant concern. There is no linear increase in risk of thrombosis when PLT rises from 430 to 550 in most cases. I have experienced platelet level increases due to reactive thombocytosis at that level several times. My MPN care team never changed my dosing. We just waited for the reaction to subside. That, however, is my case situation. Your decision would need to be informed by your case specifics.

Regarding the injections for macular degeneration, this is something to review with your MPN Specialist. While I would think the benefits far outweigh any risk, best to not assume. Given that you have not had any complications in the past related to thrombosis risk, it is most likely best to not risk deterioration of the eyesight. This risk/benefit evaluation is something you need expert guidance on. You are wise to ask the question.

[Jelbea in reply to hunter5582]

Hello Hunter and thank you very much for your quick response which I value. From your explanation I now understand that the rise in platelets was in all probability due to reaction to how ill I was at the time. I have been able to get in touch with my MPN team who have confirmed that I can go ahead with my eye injections.

I only found out about the raised platelets when I attended for my scheduled MPN appointment yesterday - although apparently the cardiology staff knew about it and also since I have been home my GP had done a blood test and knew as well - neither party responding to it. Because of the increase I have been having daily migraines with aura , some with pain and some without, since I was admitted on 3rd February and all this has been robbing me of strength. At least I now have an explanation and some help. I find that my own doctors' surgery completely ignore my ET diagnosis - I assume through ignorance as they seem to have no wish to help or understand.

Anyhow, thankfully I can get my eye injections which is great as they are really needed at present as there has been some deterioration in vision.

Again many thanks for your clarification - you are a star.

[Wyebird]

An awful dilemma wether or not to have the injections. You have to go on the advice of your consultants and your gut feelings. I really hope someone on this site can advise you

[Jelbea]

Hello Wyebird - Thankyou so much for your concern. As you will see Hunter has also replied to me and I have been able to get in touch with my MPN team who have given me the go-ahead for my injections. There is always a risk of a bleed with these but I have had over sixty and have had no bother. I am happy enough going forward. Good Wishes