Hi all hope every one is well. I have been on peg for 4 months with increased doses but didn't work. So after seeing my haemotoligist this morning she suggested that I try Jakavi. Is there anyone on this drug and how you managing anything I need to know, any side effects
Thank You
I am 73, female and diagnosed with PV and Stage 1 Myelofibrosis when I was almost 70. I have been on Jakafi/Jakavi for over 30 months. I could not tolerate Hydroxy Urea. For me, I researched (Cleveland Clinic researchers) and decided to start my dosing at 10mg twice a day. I stood fast with my oncologist that I wanted to start with the least dose possible to avoid a flood of side effects but still encourage my body to be actively working with the medication instead of my body becoming dependent on the medication to function. I also wanted to control side effects as much as possible.
I stayed 10mgx2 for 4 months. My numbers which were quite high came down to normal except for my white count and lymphocytes. My dose was reduced to 5mg twice daily in January, 2020.
Itching disappeared even though I still took hot showers because of osteoarthritis. In November, 2022 my numbers started showing a rising trend so we agreed to change my doses to 10mg in the AM and 5mg in the PM. That dosage has helped with fatigue and I have a pretty normal sized spleen. I was phlebotomy-dependent in the beginning but have not needed a phlebotomy since Sept, 2020.
For me, the worst side effects have been joint pain(manageable), stamina, intermittent bone pain and weight gain.
In talking the makers of Jakafi, weight gain can be as much as 30-35 lbs because of Jakafi’s slowing effects on the Jak1 gene.
All in all, I am very fortunate because my doctor has learned to listen to me and understands that even though I agreed to take Jakafi, my thoughts on the dosing are working for me.
Thanks. I'm starting on 5mg x daily. My platlets are 1200.i asked about weight gain and was told I should be OK. So I will keep a eye on that.
I found rux good. The weight gain often happens because you feel hungrier. But everything else is good. My platelets were lower than yours so they slowly increased the dose to try to shrink the spleen but the platelets were getting too low. I was switched to a newly approved jak inhibitor fedratinib. Rux does a good job for many people and they feel much improved. Good luck
Thank you I only started yesterday so I think it will take a few days to kick in. Hoping for good results. How you finding Fedratnib x
it was reduce ing the spleen and the platlets more stable. Not so good at calming itching. However i was only on it a few months in preparation for a stem cell transplant which I had a few days aago
Hope your feeling okay after SCT. Just take each day as it comes. Always here if you want to chat. Take Care 💖
I’ve heard of 20 pounds but never 30-35, I know several Rux patients inc me who put on just a few pounds, there is a tendancy to put on weight but I find if I eat better, ie no sugar or refined carbs and exercise more the weight does come off, I have just returned from 6 weeks holiday and let myself eat whatever on holiday, I’ve been back two weeks and lost 3 kg, I still eat plenty but eat better, in addition to cutting out sugar and refined carbs I eat Plenty protein and vegetables and healthy fats , I eat more than most people but different food and exercise which we should all try and do. Also worth bearing in mind that weight gaining tendancy on Rux maybe dose dependant, I noticed that when I increased dose from 10BID to 20+17.5, some folk on Rux for MF are on 25BID so maybe that’s where the stories of large weight gains come from.
4 months isn’t that long for Peg to work, for some to get complete control can take up to 2 years. If you can tolerate it Peg would be my drug of choice as it may be that for a subset it may have disease modifying potential. I couldn’t tolerate it and am on Rux for 5 years for PV, I find it to be very good, no sides except tendancy to put on weight but not hungrier, I exercise more and eat more carefully to compensate, over the 5 years I have put on say 2 kg which isn’t a issue for me , I haven’t been to the gym since Covid era so not sure which is the culprit. I think the weight gain is dose dependant , when I was on 10mg BID it was easier than now that I am on 20+17.5. I heard a video by Clair Harrison that a trial they did showed allele burden came down 50% on Rux and that was a fairly short trial, so maybe it will be shown it has some disease modifying potential. I have had shingles recently, allegedly 6% on Rux get it, personally I’m not sure that Covid vaccines didn’t play a part, the Shingrix vaccine for shingles maybe worth getting.
Thanks for reply. I went from 45mg to 180mg in 3 month on peg. Last month on 180mg I found hard. My Platlets went down first dose then up every month. Hoping I can tola rate Rux better. Hope your feeling well ❤️
45 to 180 in 3 months is prob too fast, hence sides,if you go for Rux you will prob find easier to tolerate or go slower for longer on Peg might/should work, I know of one person on 180 for 2 years on Peg and now hes back down to 90
I have started 5mg twice a day on Rux. Started Thursday night. So hopefully it will work. Don't know how long it takes for any side effects to start but so far feel OK x
5 is low dose standard start is 10mg BID, Rux may not give you any sides at all, most are fine on it, good luck
I'm 78 and male, diagnosed with PV in 2015. I've been on Jakafi since August after more than five years on HU leading to serious skin reactions. I started Jakafi at 10 mg twice a day. The blood count numbers improved very quickly but I also developed anemia. My dose is now 10 mg once a day. The anemia is gone and the numbers are still good. There's been a bit of weight gain and a rise in systolic BP; these side effects have been very tolerable.
Steve
Of course your specialist and you know best but 4 months is not a lot of time to see Peg working..for many (if not most) it can take a year or so to see some positive ongoing trends in bloodwork...especially if you were changing doses during that time (meaning you likely weren't on the most relevant dose for a long time at all) - it took us almost a year just to get to what we hope will be the right longer term dose - good luck!
I was on 180mg for last 4 weeks. Which was hard to tolerate She feels I'm more towards Myelofibrosis. I started on Rux yesterday so let's see. Hope your well
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