Had my Heam update after my acne like itchy rash.Confirmed allergic reaction, off Hu for good.She then said they would try me on blood thinner only! Well surprised as I've had bilateral pulmonary embolism last year big redflag. Heam is another locom so I politely asked how many Et MPN patients they had treated ( you can imagine the response)didn't go down well.
So I channelled my inner Hunter( been following all your comments) and asked for a second opinion . Heam agreed to refer to Guys.
Also has agreed for me to choose between anagrelide and interferon.
Thank you to all of the MPN's your thoughts and questions have helped this newbie to conquer her fears of confronting the medical profession.
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Spanelmad
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Go You! More evidence that assertive patients receive higher quality care. Passive patients do not.
With a history of pulmonary embolism, one would think cytoreduction in indicated. I expect that the MPN care team at Guys will suggest the same. It will be up to you, as it should be, to decide which option if a better match for you. The process is a bit involved, but also straightforward. Decide on your treatment goals, risk tolerance, and treatment preferences. Then line Pegasys and Anagrelide up for a point-to-point comparison. The med that alsigns best is the med to choose.
Here is a bit of information you may find helpful.
Only wish unseen more assertive 20 years ago when the RA was diganosed.I've also decided to restart the inflammatory diet after watching your last post.
Go you, so proud of you. I am very new to treatment and at my pre assessment, I went with my questions, helped by hunter5582 . I think they were a little surprised by my questioning. As a result my Jak2 will be monitored too. This forum of people are just the best and so supportive. Totally agree with you on wanting a second opinion. Sounds like you're going to the best, for this. Please keep us update.
It was the other way round for me. Anagrelide was great for me, but Interferon gave me quite bad side effects, including joint pain which needed strong painkillers (Tramadol). Definitely not a breeze - it was horrible!
Good for you - at the end of the day it is our health and life and making sure we are comfortable with treatment should NEVER be an issue. As my wife always says - we have no problem asking for a second opinion on things as mundane as car repairs; contractor estimates; use booking sites to find the best prices when traveling...yet all of a sudden when it comes to our health we accept what the first person in a white coat and a degree says?
Actually, I do sometimes feel sheepish to ask for second opinions/estimates on mundane things- I guess it's just my nature, but I'm less so with healthcare, likely because I've been a PA for >30 years now, so that I feel pretty generally competent in that one arena of my life.
My point is that we all have areas of uncertainty, but one of the [many] major benefits of this community is support others in their search for health and wellness.
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