Original symptoms coming back

[beckyluck]

Hi, I was diagnosed with triple negative ET in May 2017 and have been on Hydroxycarbamide since June 2017, my platelets when diagnosed were at 1300 and over the years have gone down and sit between 200-400. I had lots of symptoms but they all went over the first few years but over the last few months some of them have started coming back like bruising very easily, mouth bleeding, headaches and tiredness. My consultant can’t think why they would and my platelet count on Wednesday was 223 and all other bloods were fine, she is going to to have chat with one of her colleagues to see what they say. Has anyone else had a similar experience? Maybe it’s me and it is something completely different?!

[hunter5582]

MPNs can change and evolve over time. So can the response to medications. Each of the things you describe can be the result of either the MPN or the hydroxycarbamide or the asprin. The question is whether what you are experiencing is due to a change in the MPN or a change in how your body is tolerating the treatments prescribed.

Suggest it is time to get a second opinion from a MPN Specialist. It is more effective to do this yourself rather than having your hematologist do this on your behalf. Note that good doctors never mind you seeking a second opinion. In fact, they encourage patients to seek a second opinion. It is also a good idea to seek a second opinion from another institution (different practice, different hospital, different city, etc.). mpnforum.com/list-hem./

Wishing you all the best as you seek answers.

[beckyluck in reply to hunter5582]

Thank you very much for your response, I do appreciate you responding 😊

[Amethist]

hope your doc has also done routine vitamin checks too: vit B12, folate, vit D, iron etc just to rule out these.

Would be useful to know all these - I always ask for copies of any blood test results so I can see if things are going up / down or staying the same .

[beckyluck in reply to Amethist]

I don’t believe they did, I am seeing her again in 2 weeks so will ask her, she said she would get her colleague to call me on on Thursday just gone and let me know if there is anything they could think of that could be causing the symptoms to come back but I didn’t hear anything!

[Conneryfan]

Hi. I was diagnosed in February 2021 and am Jak2 positive. The diagnosis came as a result of many tests because of many symptoms. I have taken hydroxy since as I have other risk factors. The symptoms have never gone with my numbers reading between 400 and 500 recently. From what I read here and other information providers, lower numbers do not mean no symtoms. I take one day at a time and plan my day around how I am feeling. My GP has prescribed pregabalin and tramadol to help with the pain and I take paracetomol for headaches. Blood thinners and chronic excema mean I bruise easily anyway. I have a corker from Wednesdays blood test! I do find it frustrating, though I have a wonderful husband and wonderful friends. I laugh at some of the weird things that come out of my mouth and I rest when my body tells me. My haematologist does not understand why I am still symptomatic either. Here is where people are that live with ET. Sorry I am not giving much help. I know healthy weight and exercise are supposed to help, but I find both frustratingly difficult. I have managed to stop weight gain by fasting 19 hours and eating in a 5 hour window, though that is not for everyone. I wish you all the luck in the world. 🙂

[kid12kg]

Hi Beckyluck, I was diagnosed last year January jak 2 positive, I started having aspirin 75mg and venesections for 4 months but it didn’t work. Last August I started using hydroxy 1g everyday . I felt some pain on my hands and some needles last months. I called my GP and said my platelets are normal and advised me to take B12 , and I think it works . I don’t have much pain on my arms now and the needles. I will have my appointment with my haematology on May 13 and eager to know the results of my platelets again.This was the experiences I felt at the moment.Hope you will get better soon.

[beckyluck in reply to kid12kg]

Thanks, that’s good that the B12 seems to be helping, long may it continue 😊