New to Rux

[Sivasi]

Hi everyone. Thank you all for all the useful replies I got to my last question. Two more queries here: I'm newly diagnosed with post-ET Myelofibrosis and I've just collected my first prescription of Jakavi which I haven't taken yet.I noticed that the tablets are 20mg, and I have to take 2 a day. Someone else on this forum said they took 10mg tablets, so I'm wondering if this is a high dose for me?

Secondly, I was also prescribed Acyclovir, to be taken twice a day. Is this usual? No mention was made of it at my consultation last week and I've already had my first shingles jab. Any advice please? Am I just worrying unnecessarily?

[hunter5582]

Jakafi comes in 5-10-15-20-25 mg doses. Presumably, your hematologist set your dose based on your MPN profile.

I have not heard of Acyclovir being used as prophylaxis. Were you diagnosed with Shingles? This is not a medication I would take without understanding why.

You are asking valid questions that need to be addressed by your hematologist. Suggest an urgent call to this provider to ensure you understand and agree with this treatment plan.

[Sivasi in reply to hunter5582]

Thank you Hunter. I'm not going to take the Acyclovir until I have an explanation for it from my consultant.

[EPguy]

Rux 10 twice daily is a common dose for PV. For MF it tends to be higher, 2X 20 is not unusual. Your Dr likely feels this is right for your particulars. The dose is often adjusted later according to your response.

Your Dr is being extra cautious with the Acyclovir. Once your Shingrix vax series is done this med should no longer be required. But it is unusual to get it prophetically as Hunter notes. Possibly the relatively high Rux dose is your Dr's reason.

It's good to confirm with your Dr the reasons for your specific treatments and let them know any apparent side effects.

[Sivasi in reply to EPguy]

Thank you Eggy. It's reassuring.

[Tomsgranny]

Hi there.

I’m 79 living in UK too! I have PV JAK 2 positive

I take 15 mg of Jakavi twice daily and am also on Aciclovir which my haematologist prescribes. Despite having had a shingles vaccine when I was 70, I had shingles last year and have been left with post herpetic neuralgia which is unpleasant. I understand the Aciclovir is to avoid any further shingles episodes.

Good luck - the Jakavi has been good for me and keeps my counts in order much better than the Hydroxycarbamide ever did!

[Sivasi in reply to Tomsgranny]

Thank you Thomsgranny. So that explains the Acyclovir prescription.

[EPguy in reply to Tomsgranny]

You likely had the old live Zostavax back then. It is no longer offered. You should discuss the whether you're a candidate for the current Shingrix vax with your Dr. It is much more effective and might allow you to stop the antiviral. I've had both types of shots.

[lizzziep]

I’m post ET MF and have been on Rux since November, 2 x 20 g per day. Just got to watch hg levels. I also have EPO injections twice a week. Unfortunately had quite a bit of weight gain 😱 on the plus side my hair has thickened up, I lost some on previous drugs, however my moustache has also decided to sprout more too! 😱😱😱

[EPguy in reply to lizzziep]

to lizzziep

Interesting on the hair, I have seen the same. Rux is known for this. HU is the opposite. Weight too but not yet an issue in my case.

[lizzziep in reply to EPguy]

My hairdresser commented on it (not the moustache!)

[ainslie]

20mg twice a day is not unusual for MF, best keep an eye on your counts though. I have heard of some patients on Aciclivor to help prevent Shingles, if it’s the Shingrix vaccine your getting then it’s likely your Haem will drop the Aciclivor a few weeks after your second Shingrix jab

[Sivasi in reply to ainslie]

Thank

[gjh8733]

My oncologist prescribed acyclovir when I started Jakafi. I was also given the shingles vaccine. I will stop taking the acyclovir 2 weeks after the second shingles vaccine shot - so a total of 10 weeks of daily acyclovir. As others have said it is to prevent shingles during g that period when your immunity is building from the vaccine

[Sivasi in reply to gjh8733]

Thank you. It's put my mind at rest.