Hydrea VS Jakavi

[MarPapa]

After 20 years with hudrea the moment has came when jakavi entered my life. Does anyone have experience with jakavi? I would appreciate it if someone could tell me their experience. I could say I'm not happy with it I found the transition very difficult.

[George1976]

just switched from HU to jakafi myself mainly to see if it helps with suspected inflammation contributing to a general very sick feeling plus neuropathic issues. 10mg twice a day.

After 2 weeks no obvious improvement but perhaps some.

I was diagnosed with ET 9 years ago after BMB and other testing confirmed it.

What are you experiencing?

[MarPapa in reply to George1976]

Hi. Thanks for your response. I started it two weeks ago and all I feel is fatigue and headaches. I wonder if it's temporary or will it be like this all the time.

[George1976 in reply to MarPapa]

I’ve had fatigue and a sick headache for a few years now. New symptom from starting Jakafi is heartburn and gas And some tingling in my arms every now and then. Best of luck to you!

[EPguy in reply to George1976]

I also just switched to Rux, from Bes, also for autoimmune issues. In my case I believe the troubles were triggered by the flu vax as I've posted. Also have neuropathies. Have you had tests EMG/NCS? Theses are standard for many neuro issues.

I did find some relief recently when I restarted hi potency Curcumin, before the Rux started. But curc would not likely have helped when things were at worst.

I was told Rux tolerance troubles show in the 1st month, implication being they won't improve if they show, absent a dose reduction. Hope to hear from more Rux pts if this is true.

[william-Indo in reply to EPguy]

Curcumin need longer time to have the benefit as anti inflamation.

[ainslie in reply to EPguy]

EPguy see my other post on this thread, in the unlikely event of issues initially with Rux they are very likely to go in a few weeks or days, there’s always exceptions of course.

[George1976 in reply to EPguy]

I’ve had 8 EMGs since my foot weakness started up almost 3 years ago. 1 EMG stood out as this doc diagnosed me with an immune mediated poly radiculopathy. It’s almost good for a laugh if the implications of this stuff wasn’t so bad. It made sense though because I was exposed to Covid way back in March 2020 just a few months before my weakness became noticeable. And/or the Et/MPNs create immune/inflammation issues themselves and on peg my immune system (wbc below normal) was off guard not to mention the inflammation it causes. I’m really really Really hoping the Rux gets my feet strength back even a little! In the meantime there is one rux side effect I like and that’s some mild euphoria. I hope it lasts!!

[EPguy in reply to George1976]

We're similar in the neuro/immune issues. Mine is still a mystery but the cause is less so, the flu vax, possibly interacting with Bes, as I've posted. Both virus infection and vaxes to prevent them can cause neuropathies. Vaxes are still worth the risk on average, but I'm less keen on the flu one now. Could well be your infection led to the neuros.

Jak-i's are only recently being recognized for immune modulating benefits, esp in Rheumatology. Makes two of us eager for autoimmune relief on Rux. My Dr says I will be pleased, he has other patients on it, but he agrees my case is "complex".

I also had Covid March 2020, when my MPN was cooking hot un-dx-ed. My husband near died from it. Just learned my parents are positive and I likely will be since I just visited. But covid is now rarely the experience of early 2020.

Euphoria is good drug, I'm missing that but hoping for the weight gain.

[Rastavapa]

I was on hydrea for 15 years then anagrelide ,then interferon and Pegasus, now I've been on rux for about four years ,at first I did not like it I get a funny headache behind my eyes sometimes with it and horrible sickness ,I find either missing a dose or taking them late makes it worse . But over time as long as I am regular with the meds I only get headache or sickness every now and then. I don't think any of the treatments are completely side effect free I've been on most of them it's just finding what works for you.

Take it easy

Nick

[CraftySpider in reply to Rastavapa]

Hi Rastavapa ( great name by the way ! )

I am curious to know how you got on with Anagrelide ? …after 20 years on HU , I am experiencing more ( and worse side effects) and have been offered Anagrelide as an alternative.

[Rastavapa in reply to CraftySpider]

For me anagrelide made me anemic and the heam took me off of it ,I then went on to interferon and that made me really depressed same as pegasys, I will say that for me rux has been the least amount of side effects but we are all different . Thanks

Nick

[EPguy in reply to Rastavapa]

Good to hear that any bad effects may improve over time.

[Mal42]

hi, I am now on hydroxy and ruxolitinib. My journey through pv and now pv/mf was venesection to hydroxy now hydroxy and rux. I had begun to feel v ill and bloods got worse. Rux sorted me out. I still get tired sometimes, but I am so much better. We are all on such different mpn journeys. Good luck to you all. Mal

[ainslie]

I’ve been on Rux for 6 years for PV, very pleased with it. Initially I started on 10mg+10mg, felt a bit drugged so dropped to 2.5mg BID and slowly built it up by splitting pills and found 20+17.5mg the right dose, no side effects apart from slight tendancy to increase weight but I control that by eating a bit better. Alll my counts are normal and serious itching gone. Most people can start high dose Rux without any probs but if probs start low and increase slowly.

[EPguy in reply to ainslie]

Slow ramp up seems good for any strong meds in my opinion. I'd prefer to be on 5mg to start esp with my history but am on 10.

That is a good sized dose, 37.5/day, great that there is no negative effects.

I look fwd to getting a bit fatter, my worse fear is weight loss that I get when things go bad.

Fascinating on splitting the pills. This is "not allowed" by the Rx label, but as I've posted, I can't find a real reason not to and the pharmacy and mfr could not say a reason. I also came across a study that had a 2.5 option. There is no evidence of a coating etc. So your Dr was ok with that procedure, right?

Splitting is a $ issue with the mfr, if one is on the lower doses one pill can make more than one dose. All sizes cost same ~$17k per month.

[ainslie in reply to EPguy]

most PV patients start at 10mgBID and most MF patients at 20mg BID and most feel no sides, Dr V said he never heard of another patient having to ramp up slowly as I did.

With PV generally 60% will need more than 10BID.

Re splitting pills, any expert Haem including Dr V I spoke with are 100% fine with it, many patients do it to save money. I find pharmacists and local haems can get a bit negatively excited about it but hey Ho. I’ve been and still split pills for 6 years. In my opinion it’s necessary, if I take 20BID it lowers counts too much, 20+15 isn’t enough but 20+17.5 keeps all counts perfect, seems like common sense to me. I had a expert consult last week and he said looking at my CBC he wouldn’t know I had PV, ferritin is up to 65 also. At one point I was splitting a 5mg into eighths ie about 0.64mg, that caused some serious head scratching with one of my local haems.

[CraftySpider]

Hi MarPapa, I have also been on HU for 20 years and now being offered alternatives. Did you find side effects getting worse after 20 years ? Jo.

[MarPapa in reply to CraftySpider]

Hi, I have been with HU for 20 years and apart from the headaches and dermatological issues everything else has been fine. But for the past 6 months my platelets have been going up all the time. I've only been on the Rux for two weeks and all I feel is weakness. I look forward to the results of this treatment.

[CraftySpider in reply to MarPapa]

Hope it goes well for you.

[sbs_patient]

I started Jakafi in August after six years on HU. I needed frequent phlebotomies since HU eventually failed to do a good job of controlling HCT. Jakafi (10 mg twice a day) quickly got the numbers into normal range but eventually caused anemia. After reducing the dose to 10 mg once a day, things seem to be in control. No serious side effects so far.

[EPguy in reply to sbs_patient]

You've got more info on flexibility of Rux dosing as ainslie above on splitting. It's supposed to be 2x/day since it is short acting, but you show it's not that strict.

Mfr is working on a long release version but FDA just rejected it.

[sbs_patient]

I understand that it's short-acting, but I've been doing fine on 10 mg of Rux once a day for the last four months or so. If there's ever a problem, I would split the pills rather than order 60 5 mg pills, which would (in the US) be more expensive.

[Stripecat]

Hi MarPapa

I have a similar history on hydra for about 20 years and have now been on Jakavi for about 5 years. Only problem is balancing my Haem count w platelets but my haematologist keeps me pretty balanced but adjusting doses

Have had a couple of blood transfusions and put on a bit of weight but on the whole jakavi hasn’t been a problem

I know everyone is different so good luck w your journey.