Results are in!

[Spanelmad]

Latest Guys visit last week was given all my results and it's definitely ET! no marsking going on just the seroneg arthritis rearing it's head.Allele burden was 16% in the biopsy but 26% in the blood sample.

Because of the neuropathy issues with Peg will be starting Angerlide when the platelets go over 550. Currently I've been off meds since May and my count is still at 407 so hoping another couple of months of watch and wait.

The diet overhaul has proved successful and were down 3 stone. All processed food cut , lots of fish,chicken and vegetables. Organic when I can.

[hunter5582]

Glad to hear that you have your results and a clear plan that you are comfortable with.

Wishing you success moving forward.

[RoundTheWorld]

Good to get some certainty. Hope you continue with the reasonable platelet levels. Very well done on the healthier diet!

[Spanelmad in reply to RoundTheWorld]

Yes the consultant and I were both convinced it would be PV we had already discussed drugs!!

[PhysAssist]

Hi Spanelmad,

I'm glad to hear you had good news.

I'll keep all my crossable body parts crossed for your continued good fortune!

Best,

PA

[Spanelmad in reply to PhysAssist]

Keep them crossed because it's normally 8 weeks in and everything goes to pot!!So here's hoping I get past the stumbling blocks,so far so good ,echo was all ok so we're good to go when the little suckers reach the target!

[Lyndjs]

Great to hear you've had good news. You must be very proud of your weight loss too, that's amazing.

I hope your platelets stay low. Take care xx

[Spanelmad in reply to Lyndjs]

Decided to overhaul the diet as this was something I could control whilst waiting for results.The NHS wellbeing team local to me have been fantastic. I keep a food diary and weigh myself everyday.

[Lyndjs in reply to Spanelmad]

I like your thinking. I decided to try and improve my diet, hoping it helps. I was a chocoholic, but I rarely eat it now. I think you're doing amazing and you'll inspire others, on here xx

[Spanelmad in reply to Lyndjs]

I was told a small piece of dark chocolate now and again was ok, just not the whole bar everyday.

[Lyndjs in reply to Spanelmad]

I've heard that dark chocolate isn't too bad, unfortunately I'm not a fan. Milk and white chocolate was my favourite. I'm surprised to be saying this, but I've not really missed it xx

[Spanelmad in reply to Lyndjs]

No I agree the dark gives me a headache.

[EPguy]

16 (blood) vs 26% (BMB) is a big difference. I was also different in the same direction, 14 (blood) 19% (BMB) at Dx. Published reports claim these should match more closely as discussed here long ago. Do you have results from earlier tests? I've since had several more blood readings.

Stable PLT for 4 months is a great start to post IFN period.

[Spanelmad in reply to EPguy]

This is the first time it's been tested. The platelets were reduced down down below 240 so they're slowly cycling up

[EPguy in reply to Spanelmad]

Understand, not entirely stable. That slow increase is similar to my result upon quitting IFN.

[lizzziep]

Hope all goes well! 🤞

[Jennytheb]

Good to hear you are being so positive, its the way to go, if you flail there is always this forum to contact, great about the weight loss, all the best!

[Suenami]

that’s great news! What do you read into your allele burden results? A

[Spanelmad in reply to Suenami]

I admit I was so surprised by the results I didn't ask but it's on my list for the next appointment

[DougyW]

That's great the hear how well you are doing. How do you feel in yourself?👍

[Spanelmad in reply to DougyW]

Still have fatigue hits like a train every couple of days just have to give in and sleep for a couple of hours.Itching however is more undercontrol.