Hu days update

[Spanelmad]

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.

👍

[PhysAssist]

Hi Spanelmad,

Good for you!!

Don't let them ignore your needs or mistreat you- because if you don't stick up for yourself, who else would?!?!

Best regards,

PA

[Spanelmad in reply to PhysAssist]

Thank you ,it was a good job it was a telephone appointment otherwise I might not have had the confidence to ask.

[hunter5582]

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.

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

Here a couple of sites you may find helpful.

epocrates.com/online/drugs/... - sign up for the free account

drugs.com/pro/pegasys.html

rxlist.com/pegasys-drug.htm

All the best moving forward.

[Spanelmad]

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.

"New mantra be more Hunter"

[william-Indo]

👍👍👍

[Lyndjs]

Hi Spanelmad

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.

Take care x

[Spanelmad]

Totally agree, when I asked for what my JAK 2 % was they had no idea?

[Wyebird]

I love interferon m. Very few people including me can cope with anagrelide. Interferon is a breeze. Good luck

[Otterfield in reply to Wyebird]

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!

[Wyebird in reply to Otterfield]

Oh no so sorry peg didn’t agree with you!

[Spanelmad in reply to Wyebird]

Yes I'm leaning that way as my platelet count is not that high .

[Hydranga18]

Well done, I admire you courage

[saltmarsh]

Excellent response on your part. Good luck going forward.

[Solyesh]

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?

[PhysAssist in reply to Solyesh]

Hi Solyesh,

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.

Best,

PA

[Spanelmad]

Totally agree, it shouldn't be so difficult