Ruxolitinib update.

[wendycu]

Two weeks today I started Ruxolitinib.

Within day two, my back pain by my ribs went, spleen pain is easing, day sweats have gone, night sweat are wasting too. Bone ache, what bone ache.

I feel good. I am 100% better than I was months ago.

I get a heavy headache (not pain) now and then.

I take one in the morning and one at night. I moved the night time on to 6pm and I felt better doing that.

I was at the hospital yesterday, my consultant said straight away. “ My you look much better.” That made me smile as I do feel better. My platelets are going down from over 600 to the lower 500’s. Other bloods are stable.

Over all I am glad I made the move to change my medication.

I am still on the transplant list for the next 5/10 years, I know this will happen but for now I’m good. I have a smile back on my face 🙂 now time to get my mind ready to lost a bit of weight. I’ve done it once I can do it again.🤗

I hope you are all well. Take care.

P.S my husband said he has notice how well I am and I’ve never complained about any pain or feeling unwell.

fingers crossed I continue to be well.

[Mazcd Partner MPNVoice]

Hello Wendy, this is great news, I am so pleased for you. Maz x x

[Heidi-W]

Ah it's lovely to hear you've had such a quick positive response to the Rux-long may it continue x

[ainslie]

fantastic result Wendy, congratulations, you probably know this already but if you moved the time of one dose the other one should be as near as poss to 12 hours,

[wendycu in reply to ainslie]

Thank you, the doctor told me it had to be 12 hours. I moved it earlier on both as I’m back to work after having the summer off. I had made a difference taking it earlier.

[hunter5582]

Great news! Very glad to hear that you are feeling so much better.

[Aldebaran25]

So nice to read such good news, I am very happy for you 😊

[MPNBlog]

Great news Wendy!

[mystic_shrimp]

Hi Wendy.

That is wonderful news. The fact that Ruxolitinib has kicked in so quickly is brilliant.

Long may it continue.

[Joetcalr]

Hi Wendy, that’s fantastic news.

I’m just wondering about ruxolitinib at the moment but see it causes anaemia. I notice you’re already anaemic, I’d like to know how that goes, My Hb is currently 86, just wondering how that compares to yours. Thanks for posting your good news. Jo

[wendycu in reply to Joetcalr]

Hi Jo,

My HB is low, I can’t remember the number. I take iron tables to help.

I have started to eat more green veg, eggs and nuts to see if that helps me too.

[Wyebird in reply to Joetcalr]

86 is low I was bad at 93. Are you in Hydroxicarbomide

[Joetcalr in reply to Wyebird]

hi Wyebird, right now I’m on nothing apart from Eprex injections for the next three weeks (for revving up red blood cells), can’t say I’ve noticed anything happening yet, I was hoping for instant results! so onward to Everest base camp for now - that’s how it feels.

I was on Peg and was convinced it was making me anaemic, but looks like I was wrong and I’ve got Mf instead.

[Wyebird in reply to Joetcalr]

oh no a horrid outcome. I wish you well.

[beetle]

I love reading good news on here. Thank you for posting this. I’m struggling with the weight loss thing at the moment. I have improved my diet a bit (it was not that bad anyway) and was just knocked off course a bit by recent birthday celebrations. Ruxolitinib apparently interferes with our body knowing it’s had enough to eat which is why people put on weight with Rux. I have found that what should be a weight loss calorie count is actually a good maintenance diet so I clearly need to be more active. I wish you success with your weight loss. Best wishes, Jan

[Exeter21]

sounds brilliant so pleased a positive result on symptoms so far. Just to have no pain is great for you 👍 Julia .

[Wyebird]

oh amazing news. Now whilst you are good pack in as much as possible. Pacing yourself of course.

[CraftySpider]

Lovely to read of such a positive result, I have been on HU for 19 years and was thinking about asking to try Rux at my Haemo appointment next month..I have pain in my hips, shoulders & knees, so am hopeful it might help.

[wendycu in reply to CraftySpider]

I have arthritis in both knees and right hip.

Fingers crossed, touch wood, I’ve not been in any bad pain since I’ve started this new medication. I was scared at first but I thought about how I was 15 years ago starting Hydroxy. Worried about side affects, I said to my self - “you don’t know until you try it.” I’m glad I did.

[CraftySpider in reply to wendycu]

Thankyou Wendy, I am nervous too…especially regarding weight gain..but definitely worth a try.

[Hopetohelp]

so pleased to hear you are feeling better and I hope the headaches clear up soon too. Thanks very much for keeping us posted

[Cja1956]

That’s wonderful news! Now you can get back to doing the things you love.

[wendycu in reply to Cja1956]

I done a 10 mile walk the other day, back to work ( part time again after doing two years full time at school, to cover Covid catch up) now I’m able to decorate my house. I’m enjoying my afternoons off, to do my own things.

[Walkingj]

Thank you for the post, I am pleased to hear how well you are doing. Jean

[mhos61]

So pleased for you, sounds very encouraging.

[SRH55]

That’s really good to hear, specially as it worked so quickly for you. I am due to start on Rux in the next couple of weeks (along with steroids too, but don’t quite know why), so it’s good for me to hear of someone doing so well.

Best wishes,

Shirley

[KoroCharlie]

That has been my experience also. Ruxolitnib led to an almost immediate reduction/elimination of spleen pain, night sweats and generally feeling ‘off’. I welcomed the weight gain also as I had lost considerable condition as a result of MF. Two years on and things still going well but I take nothing for granted. I’ll stay on the rux for as long as it continues to benefit my health. One drawback has been the need to buy more roomier clothes having given away most of my wardrobe from my previous ‘normal’ life. But I can live with that!

[PhysAssist]

Hi Wendy,

So happy to hear that you're doing so well, and that you have such a positive outlook after the long roads you're traveled.

Remember that living well is the best revenge [or for us I guess it's retribution against the MPN's that plague us]...

So live well!

Best regards,

PA