Ruxolitinib

[Big-Ted]

Hi Folks

I am about to start on Ruxolitinib does anyone have any advice for me please.I am already on Hydroxycarbamide and aspirin.

Thanks

[Otterfield]

Ruxolitinib has been great for me so far. I started in late August, my spleen is much reduced and my energy levels are much better than I thought possible with MF.

You have to take it at regular times - I do 7.30am and 7.30pm - and you mustn't suddenly stop taking it.

Apparently weight gain is a possible side effect but for me that's a good thing at the moment, although I've only gained a little. Also it causes flatulence, which is obviously embarrassing!

Hope this helps.

[Inca in reply to Otterfield]

Oh Yes!!!I have lost my waist line......and the other you mention,glad it's not just me!!!'Otherwise I am better than Hydrea days which stopped working for me & caused serious skin problems.Very Best to you & Good Luck with Rux.

[Chicagopv]

I got on it because of severe itching. I had been on by. I started on 20 or 25mg Jakafi and am now down to 5mg. Itching is so much under control! My co-pay is$20/month. The price will go up steeply when I get on Medicare.

[Cja1956 in reply to Chicagopv]

Interesting that you mentioned Medicare. I sell Medicare and I’m turning 65 in February. I take Fedratinib for MF, and it’s not even covered on any of the drug plans. Hydroxy is covered, which I take as well. I was in a panic over the Fedratinib and I wrote to my hematologist, who put me in touch with a social worker. Apparently, there are patient assistance programs, but you have to qualify for them financially. And, if I don’t qualify, then what? I’m really in a quandary about this and very nervous. When do you go on Medicare and what is your plan?

[WeeHarry]

Hi

I started Ruxolitinib about 3 years ago but dosage was too high and I had to have blood transfusions so came off. Last year I tried again with 5mg pill twice a day, What a difference more energy fewer blood transfusions. I have MF

[kalikali]

My husband went on ruxolitinib a year ago, and it gave him a new lease of life. His appetite increased; he had been reduced to living on small bowls of porridge. His energy levels went from very low to marginally low (but a huge improvement for him).

His blood counts moved towards their normal values and we tracked these closely on a spreadsheet to give him back some control over his myelofibrosis. To comply with the regularity of taking ruxolitinib, we set his mobile phone alarm clock to ring twice a day to remind him.

Sadly he also had other illnesses, he had COPD and lung issues and he was taken one year after starting ruxolitinib, with pneumonia. But the drug gave us one more year to be together.

Good luck and stay strong

[Cja1956 in reply to kalikali]

So sorry to hear about your husband. I’m glad your last year with him he had regained some of his strength. Sounds like you had a remarkable relationship.

[Cja1956]

Over my 12plus years with ET, and now MF, I’ve been on Hydrea, anagrelide, ruxo, and now Fedratinib, at different times and dosages. I liked ruxo the best. It gave me the least side effects and reduced my spleen, I did experience some weight gain, but I am normally a slim person, so it didn’t bother me so much. But after a few years on it, my new hematologist I found in 2019 took me off of it and thinks it may have contributed to my anemia, which I developed around 2017.

Good luck on your mpn journey.

[Psteuer]

I've been on Ruxo since 2016. It works splendidly to control my counts. Most patients do have weight gain. The drug was designed to stimulate appetite in MF patients who have been unable to eat due to enlarged spleens. I've gained 26 pounds. Try and maintain a regular exercise routine and make healthy choices about food. As someone else suggested, do take the medication as close to every twelve hours as you can. I experience sweats and extra fatigue in the hours before my next dose is due.

[tracey13]

My husband takes his ruxolitanib at 6pm he was on hydroxy and rux but he's now just on ruxolitanib he never had any side effects been on it nearly 2 years now .

Tracey

[socrates_8]

Gooday Ted...

My name is Steve from Sydney, and I have been on Ruxolitinib (Jakafi), almost 4 years now. Initially, it reduced my slightly enlarged spleen, and my symptom burden became less intense. I still have heavy fatigue days, (from time to time), and also trouble w/ sleep deprivation, but all in all its much better than I was ever on HU. I could not stand the chemo-fog of HU nor some of the other side-effects, and was much better after cessation of same...

My weight is well under control, (lost over 25kg), also as I have a diet I really enjoy that is purely 'Plant-based' and I also have daily 'Intermittent Fasting' periods, all coupled w/ my cycling exercise regime...

I have learned that I must control the levels of "Inflammation" within my body's eco-system... and this in turn, I believe will aid my longevity... works for me...

Best wishes

Steve

[Big-Ted in reply to socrates_8]

Thankyou so much Socrates sounds very encouraging.Good luck to you.Best Wishes Ted

[Inca in reply to socrates_8]

Steve ,you always post helpful info.I still get my fatigue days,but my consultant thinks I am crazy to have horse & G S D dogs at my age,never mind the P V. He isn't bothered that I have lost waist line ,as actually my weight stays exactly the same at50 kilos.! Maybe the rest of me has got thinner!!!! I live on veg & salad,pasta & fish.Dont ever eat chocolate or rich stuff,share polo mints with my last mare ,she is 35 yrs now,I bred her ,think she may out live me.Best to you Steve Keep Safe,Sally

[socrates_8 in reply to Inca]

Hey Sally...

Don't listen to to him... We all need something in our lives outside of ourselves to be passionate about... Horses have such a majestic presence, (in most cases...

Not as fussed about dogs myself... But what matters is what keeps you/us happy...

Stay safe & well Sally...

Steve

[Inca in reply to socrates_8]

You are so right Steve,My Horses have all been home bred,top drawer breeding,so very beautiful to look at not to mention their amazing competitive careers.....caring for them is very hard physical work,which is why my consultant is not happy about my involvement.Hubby does the 'donkey work' for me,I admire & love them,they are inspiration for my sculptures so very much part of my keeping going.,without that I would be miserable !!!You keep up too with your needs it's important for us M P Ners. Best to you from a very sunny Fr,glorious Indian Summer, Sally

[socrates_8 in reply to Inca]

Many years ago... (almost another lifetime...), I used to 'muck-out' the stables just to be closer to horses in a Quarter/Arab stud farm... Magnificent creatures indeed. Many fond memories Sally...

Best wishes

Steve

[Inca in reply to socrates_8]

Oh,interesting..We went to a Quarter horse & Morgan horse stud in Vermont USA some long long years ago....so different from most breeds.Arabs I love, some of our top show horses & ponies are part bred Arab X English Thoroughbred......the Racehorses all National Hunt Jumpers..,T Bs of course.Love National Hunt Racing,Bred & owned some great winners.......long years ago now best times of our lives. Get a quiet cob to ride instead of the bike!!!!!!!Sally.

[MCW22]

After 2 years on hydroxycarbomide my white cell count was still high at 30 so was changed abruptly to Ruxolitinib, which I have now been on 18 months. My spleen reduced along with associated discomfort. Itching stopped, coughing stopped and white cells came down to 17 at the best but generally hover around 20. Just recently though I have had a few twinges in the spleen area which are different to the stitch type discomfort I had previously

[Inca]

Yes my spleen has reduced since nearly 2 yrs on Rux,like you I still get the odd pain in that area,but bloods improving ..odd blip last month,but evidently to be expected I was told.....I am P V nearly 12 yrs now. Best to you.