RUXOLITINIB : Two weeks ago I was lucky enough to... - MPN Voice

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RUXOLITINIB

Heather270240 profile image
11 Replies

Two weeks ago I was lucky enough to be accepted for the drug Ruxolitinib. Previously I was on Hydroxycarbamide which my body rejected and caused breathing problems. All went well for the first week on Ruxotilib but 4 days ago I started feeling very unwell lightheadedness, nauseous, bloating all the side effects which showed on the information given with the medication. Does anyone else taking this medication have these symptoms I feel gutted as I thought this medication was my saving grace.

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Heather270240
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11 Replies
Gipsy123 profile image
Gipsy123

Hi. Do contact your doctor: are you taking any other meds? Rux interacts with many. Various antibiotics, for example, can increase the absorption of rux. All the bestRachel

Scrappinggolfer profile image
Scrappinggolfer

It could be dose strength. I have been on it since December and we are still working on correct dosage. For the most part, the benefits I am seeing far out weigh the side effects. Talk to Doc and see what they think. Good luck! Hope things settle and improve!

ainslie profile image
ainslie

I’ve been on it 4 years and no probs at all, it’s possible it’s unrelated, definitely contact Haem and GP or Haem nurse soon

Heather270240 profile image
Heather270240

Hi Ainslie. Many thanks for your reply. I think you may be correct. I am on a high dose of Prednisone for another illness and I think they may be conflicting. I have a phone appointment with Prof Harrison from Guy's on Monday so I will make her aware. I am hoping it will settle down.

Meatloaf9 profile image
Meatloaf9

Sorry to hear that you are having difficulties. Best to talk to your Docs to get this sorted out.Best of luck going forward.

Heather270240 profile image
Heather270240 in reply to Meatloaf9

Many thanks for your msg. My platelets are 900 and as you see on my post I am on Ruxotilib. Fingers crossed this med will get them down. Here in the UK once you are over 60 with platelets over 450 you are automatically put on Hydroxycarbamide which most people can tolerate but unfortunately I couldn't hence the reason I am on Ruxotilib. Good luck.

ainslie profile image
ainslie in reply to Heather270240

For some it can take a while for Rux to bring down platelets, in fact for many there can be a temporary increase, mine went up from 600 to 750 after starting Rux for PV but now they are 270. Most expert Haems would say platelets at 900 don’t need treating unless you have symptoms, Clair Harrison can prob confirm that.

Wyebird profile image
Wyebird

Hope you get sorted soon

Heather270240 profile image
Heather270240 in reply to Wyebird

Thank you. I speak to my Haematologist on Monday. Fingers crossed.

tracey13 profile image
tracey13

My husband's on ruxolitanib it's been a life changer for him.All his bloods are in normal range now.

He's had no side effects at all.

It's also reduced his spleen size down .

Tracey

Heather270240 profile image
Heather270240

Thank you for that Tracy 13. Out of curiosity is he on any other meds?

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