Lower dose

[champ30]

Hello all,

Have any of you on Ruxolitinib been lowered from 10mg twice daily to 5mg twice daily? I'm wondering if there will be a not too favourable reaction.

My haemo doctor and I deliberated over this and Decided to try as my haemaglobin drops fairly rapidly,have blood roughly every month.Platelets,wbc And neutrophils normal now.

Kind regards Lyn

[jane13]

Not much help, but I went from 15 to 10, worked fine. My platelets were too low on 15mg, also reds, now better. We wanted to keep the dose up as some of the benefits seem less well evidenced on 5mg? good luck!

[Dodders]

I also have recently gone fom 15 x 2 per day to 10 x 2 per day (Hgb down to 88 and platelets also dropping) but have experienced no problems. I was told in a very pointed manner by the Dr that if you stop Rux suddenly it can be pretty unpleasant. I don't know if going from 10 to 5 is going to cause probs or not for you -sorry, not helpful- but knowing that I'm now on the road to a transplant (if donor is found) I assume I will have to be 'weaned' of Rux at some some point and so I would imagine that moving to a lower dose shouldn't be too problematic whereas stopping suddenly can be.

[Rachelthepotter]

Hi Lynn. Have your EPO levels been checked? I’ve been on Rux ( 3 x 10 mg a day) for MF for 6 months now and it knocked my hb levels down. Felt awful. My own natural EPO levels were low so injecting EPO was suggested. Which I’m doing. It helps some people, and it brought my HB levels up but despite that I still feel very tired. May be worth a chat with yr haematologist to see if its an option for you?

All the best

[champ30 in reply to Rachelthepotter]

Hi Rachel,

Thanks for info.Will keep you updated on dropping 5mgs Rux.Also I will mention EPO levels to haematologist.

Sorry you're not feeling good.I don't do much these days either,but I have a referral to a gym today with a specialist trainer in the hope I can manage a little exercise.

I used to walk before diagnosed,but now it's winter it's not a good idea to be in the cold,even a short walk and good day I have to feel good before embarking.I am breathless and tired.

Thanks for your support

Lyn.

[Rachelthepotter in reply to champ30]

Dear Lyn

And thank you, too, for your support. I’d been thinking of finding a safe exercise environment where I could have company and be able to bail out if necessary. I too used to be a walker, and I need to get a bit of strength and fitness back if I can. I’ll see what’s available locally.

All the best

Rachel

[champ30 in reply to Rachelthepotter]

I got my referral through Force cancer support group.

My referral went well and am going to go to the gym where I will be started on a very slow programme and see how I get on, hopefully increase level slowly over time.

I'll let you know how I get on.

Kind regards Lyn.

[Rachelthepotter in reply to champ30]

Likewise. Many thanks.

[champ30 in reply to Rachelthepotter]

Hi Rachel, Well all was good at gym twice but now have got another chest infection (cough blood as I have bronchiectasis,,) so stop now whilst on antibiotics.

I had a good day Sat as had had 2 bags of blood so went to our town, climbed a hill stupidly as weather was cold and now suffering.Overdid stuff again.It is a hard condition to manage plus the bronchiectasis.

Hope you're ok?

Best wishes Lyn

[Norman45]

I started on 20mg X 2 in May 2016 for MF and felt fine for a month but then hit a brick wall. I was sleeping 12 hours a night and another two hours in the afternoon with no energy levels at all.

Sent a quick email to the Haemo who originally prescribed Ruxolitinib and she told me to half the dose. Slowly regained some control of my life and now nearly 18 months on I tolerate this dose well. While I still feel fatigued, with good days and bad days, life is bearable and my blood levels are well under control and rarely change much when I go for my eight week check.

I feel much better on Ruxolitinib than either Hydroxy Carbanmide or Anagrelide.

Hope this helps.

[champ30]

Hi Norman, like you on 10 mgs rux (providing my other condition Bronchiectasis doesn't interfere) I have been ok.Likewise good and bad days.

My haemaglobin seems to be problem dropping fairly fast so doctor and me discussed trying 5mg dose.We'll see how it goes,have blood test in 2 weeks,to check haemaglobin level, when I saw doc I was 86 after 1 month when I had 2 bags blood.I have transfusion when I'm around 74.So wait and see.

Thanks for your reply.

Regards Lyn.

[Andrew8]

Hello Champ,

I was diagnosed with ET in April 2016, put on hydroxy', but in December 2016 developed severe fatigue. My Haemo specialist denied any connection, but the fatigue got worse, and in early 2017 , I was changed to analgrelide, but the fatigue continued, still my Haemo't denied it was a drug problem. I was not convinced so saw my GP who immediately diagnosed abnormal heart rhythm (listed possible side effect of hydro and analgrelide ) - immediate admission to cardio unit at local hospital, My Cardiologist was surprised to say the least, ( raise eyebrows etc) that my Haemo't had never checked pulse, or blood pressure. As I was about to be discharged after 7 days treatment, the haemo nurse came running after me wanting me to see the Haemo't within the next few days . I was then booked in within 2 days for another bone marrow aspiration, which the showed the ET had changed to myelofibrosis ? , so I was changed on to ruxolitinib , which I have taken at the rate of 20mg twice per day.

After further cardio treatment a second cardioversion at the end of September 2017 has brought the abnormal heart rhythm under control with Amiodarone Also taking aspirin , rivaroxaban, furosemide and omeprazole.

Developed shingles symptoms 3 August, (listed possible side effect of ruxolitinib ) still not rid of rash, but gradually improving.

So I would suggest that if anyone is on Hydroxy' or Analgrelide, if they experience fatigue they should ask for an ECG.

It would seem that my ET was caused by long term exposure to benzine. Oil companies keep that one quiet.

Platelet level 500 - 600 , and feeling much better, walking 3 miles per day or other exercise such as twice weekly cardio rehab exercise sessions.