Jakafi

[K-itty]

I'm to start on Jakafi soon, after not being able to tolerate HU. Are some of you on this site currently on Jakafi and what side effects have you experienced? Weight gain, fatigue, hair loss, high cholesterol? How long before you began noticing side effects after starting the RX? What were your doses? 😊

[K-itty]

Sorry, also meant to inquire if those of you on Jakafi, also saw improvements with symptoms and elevated numbers? In addition to PV, I also have ET. Did Jakafi help lower platelet numbers?

[monarch5000 in reply to K-itty]

Yes Jakafi helps symptoms and lowers platelets. Interferon does too, but unlike Jakafi, it has a 30 year long track record of being able to slow or halt the progression of ET & PV disease to myelofibrosis (see very brief video below). In the USA, many "oncologists" have little or no prescribing experience with interferon (brand names Pegasys & Besremi) so may not mention it to their patients as a treatment option. So if you'd like to be considered for a prescription for interferon you'd likely have to go somewhere in Los Angeles to see an MPN specialist like Angela Fleishman at UC Irvine. youtu.be/W3JJBS645c4(Not working as expected?)

[ainslie in reply to monarch5000]

as usual we need to be clear that Peg/Bes might slow progression for a minority as opposed to everyone. As the patient is actually asking about Rux it is also important that there is now clear data showing that Rux for some can also lower allele burden and increase progression free survival , as per Clair Harrison paper at ASH last year

[wendycu]

Hi, I’m on 20mg twice a day. Since August 2022.

I had a great start, I feel must better. No side affects but only weight gain. Some of the gain could be down to menopause and the medication. I’ve haven’t been able to do much walking and exercise because I twisted my ankle, the bone was out of the joint. It’s getting better, now I’m walking a lot more.

I say to my self, it’s a little be of weight, I will manage, but I’m here, little steps at a time.

I’m glad I made the change, before hand I was tried, couldn’t do much after work.

I hope everything goes well for you.

Take care.

[Sewingtime]

Hi K-itty, Jakafi has been amazing for me. I must say that getting the dosage just right has been a bit of a trial and error, but I am now stable at 5 mg in the morning and 10 mg at night. Too high a dose had my numbers too low, and too low had my counts rise and also the associated return of the dreaded itching (which Jakafi had solved!). At the current dose my blood counts are a tad on the low side, so I sometimes feel a little tired but it is well worth it to be rid of the itching. No weight gain here, but I focus on eating healthy and getting plenty of exercise. Good luck to you, Jakafi has been really good for me. I am going to have a re-do of my JAK2 mutation test in July after 2 years and hope that it might also have positively impacted my allele burden (was at 60% 2 years ago), so I can report back then.

[Anouchka]

Hi K-itty, I cldn’t tolerate Hydroxy either and was put on Jakafi 20 mg last Sept. Platelets still too high so was migrated to 30mg.

Some hairloss, managed with supplements targeting that; very slow gradual weight gain 3-5 kg which I manage as I found I had become more susceptible to sweet things; worst side effect is heavy lower legs (but acupuncture seems to help there : recent, so keeping fingers crossed); “scrungy” toes - which apparently is a prevalent side effect - which is annoying, and fatigue.

I have apptmt with my specialist in 2 weeks time and I reckon we’ll be addressing dosage…

As wendycu said : little steps st a time. I’m still active and “kicking”.

Good luck to you.

[ainslie in reply to Anouchka]

sorry to hear about your hairloss, I have never heard Rux causing hairloss , are you sure it’s the Rux, I have heard of Rux helping hair, certainly mine has, it’s also a drug used for certain types of alopecia so raises a question

[Anouchka in reply to ainslie]

Hi ainslie, it could have been delayed aftermath of Hydrea, but seemed to manifest once I started taking Jakafi. Thankfully I was aware of it and addressed it in good time. All is well again.

[dogsandhorses in reply to Anouchka]

What did you use to address the hair loss, if I may ask?

[Anouchka in reply to dogsandhorses]

I found the products Priorin and also Hair Volume, this latter manufactured by New Nordic.

[dogsandhorses in reply to Anouchka]

Thank you.

[K-itty in reply to Anouchka]

I'm unclear as to the term, " scrungy"? Fun word...British? I think quite a few on this site are from the UK? Deduced that from the different spelling of words and the availability of certain meds.Thank you for your response to my query about Jakafi and good luck to you to fellow traveler.

[Otterfield in reply to K-itty]

I've never heard the word "scrungy" before and I'm British. I've no idea what it means!

[Anouchka in reply to K-itty]

I may be misquoting hunter5582 here… I found it a difficult word to remember (lol!), but it’s a side effect of PV and meds and it’s like feeling your socks are all scrounged up inside your shoes/slippers/ boots, etc only to find there’s not a pleat in them.

Oh, and just to set the record straight I’m not British, but don’t in the least mind being called one… 😃

[K-itty in reply to Anouchka]

Good to know! Thought it was a fun word! Nice to have some clarification on it's meaning.

[K-itty in reply to K-itty]

My reference to being British or from the UK was made, maybe erroneously, from the difference in words and spelling, i.e. hematology or realize.

[Anouchka in reply to K-itty]

it’s a distinctive difference, but Canada also has “Brit spelling” - go figure, eh? Lol!

[ainslie]

most people on Rux have few sides, a tendancy to increase weight yes for many but controllable with eating clean and reducing or stopping sugar and eating just enough complex carbs as opposed to refined carbs. Hairloss, see my post below which is positive.

[Anouchka in reply to ainslie]

sorry, can’t see your post below re hairloss…

[ainslie in reply to Anouchka]

sorry it above in the post not below

[sbs_patient]

After about 5 years on HU, I developed serious skin reactions, and I was started on Jakafi last August. I started at 10 mg twice a day but developed anemia; I am now taking 10 mg once a day. Platelet numbers are stable in the 400s; previously they were up near 1000. HCT stable at just under 40. However, WBC remains high at about 20.

[liarose in reply to sbs_patient]

what skin reactions did you get. I have permanent redness and rash on both lower legs and can't find anything to help

[sbs_patient]

First my fingernails became darkened; that was strange but tolerable. Later on I developed ulcers on the backs of my hands. A dermatologist told me that this was most likely a reaction to HU. A steroid cream helped with the ulcers, and my HU dosage was cut in half to 500 mg/day. The problem was that this dosage wasn't helping with HCT and platelets, so I needed frequent phlebotomy. In the end a MPN specialist suggested that I switch to Jakafi.

[K-itty in reply to sbs_patient]

I also developed skin and mouth ulcers from HU...also thinning hair and toenails turned black as well. No fun!Hope you are successful with Jakafi.

[sbs_patient]

Definitely no fun! Jakafi quickly lowered my hematocrit and platelets, but the initial dose made me anemic - also no fun! I've been on my current dose (10 mg once a day) for about six months now. Blood count numbers are now near normal and seem to be stable (except for WBC, which remains consistently high), and (best of all) I feel well. Good luck!!

[EPguy]

I've been on Jakafi (Rux) for about 6 weeks, 10 BID (twice a day). So far no side effects. I went thru HU, IFN (interferon) , and now Rux (Jakafi)

On hair loss, as noted here, Rux can actually cure one type of hair loss for some, and is being considered for other types. So it might even help reverse loss for MPN patients, but this has not been closely studied. This was discussed in a recent post. So it does not share that effect that HU has. Likewise my fingernails were messed up for months after I quit HU.

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Until the last few months, IFN was considered the only disease modifying medication, as monarch notes here.

But just this year reports are available indicating Rux shares some of the best benefits of IFN for PV, so you can feel good about selecting this option if your Dr has recommended.

This post is an example of the new results:

healthunlocked.com/mpnvoice...

IFN is excellent medicine, but apparently with the latest data, so is Rux.

My Dr, MPN specialist, recommended Rux over Besremi for me, but I could chose either. I didn't have the new info on Rux at that time so I went with Bes. It worked great, till an adverse vaccine reaction with the IFN turned my life upside down. You can read my posts if interested in details.

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My Dr said IFN is "tough medicine". For the rare unlucky it can be very much so. It has the most serious black box warning as in this image. I am suffering the autoimmune outcome listed there. Rux does not currently share this most severe risk category.

Besremi also lists hair loss as a risk, but I had less issue on IFN vs HU. Hair loss is not a listed risk for Rux.

In hindsight I should have taken Dr's advice to go with Rux, but for most either treatment is very good.

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On symptoms, Rux is quite effective for many as noted by member wendycu here. Rux may even help with immune troubles. I am eagerly awaiting this benefit.

Bes Black Box

[SRH55]

Hi K-itty, I have been on Rux since October last year, 10 mg twice a day. I did gain weight about 9 lbs, that has now stabilised. My spleen size has reduced from 14.5 cm to 11.5 cm. I have no other side effects. I now have Post ET MF, that is as the reason I was put onto Rux. Good luck.

[MichaelS]

Hello K-itty, I've been using Rux' 10mg twice a day since early 2014, due to PV changing to MF in about 2009/2010. My spleen disappeared very quickly, in just 2 or 3 days, and mouth ulcers stopped, after taking Hydroxycarbamide from 1983. I have put on weight in the last couple years, but that may be because I had arthritis in my hip, which I had replaced last year and am now walking quite well again. I want you to really take care of your skin and wear sun protection all the time if you are going outside. I have had 5 skin cancers on my face and head since 2018, 5 years after starting Rux', so my specialist is pretty sure it is due to the Rux'. It's a nuisance having to have the skin cancers removed but on the other hand I am feeling well and still enjoying my life. I will be 77 soon 😀