Anagrelide advice

[amhann]

Hello people

Soz this is a long one! - haven't posted for some time and hoping for some thoughts. I'm ET with NMZ lymphoma as added bonus and on hydroxy for the last 6 years. Platelets have been reasonably stable, though I have certainly found the others (whites, neuts, lymphs) dipping to or below range and picking up infections (3rd UTI this year)

My Haem knows I get concerned when levels drop (not least because if my LDH and ESR are being held artificially low, they are pretty much my only 'heads up' that the lymphoma might be kicking off). She is suggesting a possible change to Anagrelide. I have done some research, and read posts on this forum, and while some things make me a bit 'twitchy' (I would definitely be wanting a cardio check) it would be a plus if the other counts may show a more accurate state of play, and the immune side be more robust.

Any input from you wonderful people would be very useful.

As an aside, I've been told at GP that I'm not eligible for the Shingrix vac - I would beg to differ on that, but will take that up when I'm feeling a bit better!

Thanks all Anne-Marie.

[hunter5582]

Suggest considering all of your options to treat the ET. In addition to HU and anagrelide, Pegasys is another commonly used option. Many would prefer Pegasys to anagrelide. Suggest that you line all three up side by side and compare the relative benefits, risks/adverse effects, contraindications/cautions, and drug interactions with the rest of what you take.

Suggest reviewing this with a MPN Specialist if you are not already seeing one. You have a complex case and need high-level expert review.

Regarding Shingrix, it does not contain a live virus. Unless you have one of the contraindications, it should be OK to take as others on the forum have done and I plan to do. This is another issue to review with a MPN Specialist. A GP is much less likely to be familiar with the care issues related to MPNs.

[amhann in reply to hunter5582]

many thanks hunter (am fairly sure Pegasys not an option here for ET, at least not my age) + my main thought for Anagrelide is the fact it only acts on platelets - lots more reading + comparisons (including Peg) on the cards before my next appointment. On the shingrix issue it’s a UK licence issue so GP nurse was just going on the age limitations - I’ll be putting them straight on eligibility)!

[CraftySpider]

Hi Anne-Marie, I have MF and had been on HU for twenty years, before asking to switch to Anagrelide in July…after my haematologist agreed I was very nervous about my decision, having read all the possible side effects…I wanted to see if any of my symptoms..bone pain, GI issues, dry skin , thinning hair etc would be better on a drug that wasn’t chemo….my experience with Anagrelide has been fine, a couple of fleeting moments of heart racing in first week, but otherwise good..and my haemo is happy with steady blood counts. Hasn’t got rid of any of my symptoms yet, but apparently can take up to 6 months for HU to get out of your system. I currently am dealing with breast cancer and also wondered if the HU might have masked the symptoms. Good luck with whatever you choose.

[amhann in reply to CraftySpider]

hello CraftySpider - thanks so much for your post - I have to weigh things up but as things stand I’m leaning towards giving it a try (I have always been worried about hydroxy giving false lows) - so sorry that you are having to deal with a breast cancer diagnosis - I hope you have a good team behind you + wish you all the very best for successful treatment. Anne-Marie x