Ruxolitinib

[Bobadog]

Hi

Has anyone been on Ruxolitinib for PV for the last couple of years ,and could share the effects regarding taking Ruxolitinib?

I have been advised to consider this ,as I had to stop taking Peg INF ,

Many thanks ,

Bobbie

[Rob58]

Hi Bobbie

I moved from Peg Interferon to Ruxi as I was so unwell with the interferon. I lost two stone, turned grey and tired and I hated the injections and all the associated hassle when travelling. Ruxi has changed my life! I’ve gained weight, fatigue has lessened and I am more or less now leading a normal life. Side effects? I got shingles once which was nasty and I now take Aciclovir daily as a preventative. You also need to keep an eye on your cholesterol and I also take a statin. My bloods have been good. I’d highly recommend especially as it’s now been approved by NICE so should be more readily available.

[Tomsgranny in reply to Rob58]

Hi I’ve been on a trial taking Ruxolitinib for nearly two years now. I’ve got PV JAK2+. It has been so much better than Hydroxycarbamide - my headaches have gone and my blood counts are all much better and consistent. The downside is unwanted weight gain and, interestingly, I’ve just had shingles( very nasty!) and have issues with cholesterol.

[Bobadog in reply to Rob58]

Many thanks,this is very interesting ,and encouraging.I don’t need to gain weight though,so I’ll eat less whilst taking Rux!

Peg Inf worked very well for me haemo-speaking for 18months before the paraesthesia increased All the very best

Bobbie

[HHTH]

My husband has been on Rux for at least 4 years now, he has regular appointments with dermatology as the risk of skin cancers is high. This is a worry as he has had many lesions cut out. He has had weight gain also. He bruises easily. He has recently had other side effects and feeling generally rubbish so his dosage has been lowered.

His bloods have been great the whole time and his spleen has shrunk. We have requested a face to face with his consultant to discuss some of these issues as he has only had calls from haematology nurse since covid!

He also thinks his tinnitus could be related.

[Bobadog in reply to HHTH]

Many thanks for the reply ,and I do hope that you get a F2 F appointment with the consultant soon for your husband .

[Anouchka]

I’ve only been in it for a year and am still trying to figure out whether side effects are PV related or whether they are Jakafi related… 🥹 Either way it’s keeping my platelets and red blood cells at an “acceptable” level (according to my Haematologist.

Good luck going forward

[Michael56]

Ho bobbing

I was put on to rux on my mutation to MF, last year, up and down with it to start but reducing from 20 to 10mg settled things down, at 67 I'm just going through my first bad experience of shingles which at times was excruciating and painful but after 2 days of Acyclovir is showing a big improvement. I wish you all the best with the change 👍

[Bobadog in reply to Michael56]

Many thanks Michael.

I am concerned about the shingles element regarding Rux,but I suppose the shingles vaccination could help prevent this.

All the very best ,

Bobbie

[sbs_patient]

Bobbie, I have PV and I've been on Rux for about 16 months now. I started at 10 mg twice a day but became anemic, so the dose was reduced to 10 mg once a day. This seems to work well for me, even though twice a day is the usual dosage pattern. My blood count numbers are now stable, at or near normal. There have been some side effects, most notably an exacerbation of my long-standing irritable bowel syndrome, but they've been manageable. My shingles vaccinations seem to have protected me so far from this side effect. I also recommend this medication very highly.

[Bobadog in reply to sbs_patient]

Thanks,it’s good to hear that you recommend the Rux

[tracey13]

My husband has post PV primary MF he's been on ruxolitnib for 4.5 years now he's had no side effects at all.All his bloods are in normal range and have been for a few years .

Tracey

[Bobadog in reply to tracey13]

Thanks ,good to hear this , and such great news for your husband,

All the best,

Bobbie

[ainslie]

I’ve been on Rux 6 years for PV, no side effects, all counts normal , feel well, I’ve just had a BMB and NGS test both came out excellent, BMB showed substantial improvement on previous BMB’s done pre Rux. I will post more on this on a separate post , I just got the results from expert at Mount Sinai today so will digest and clarify and then post.

I too could not tolerate Peg, however it can be a very good drug for those who can tolerate it.

[Bobadog in reply to ainslie]

Many thanks Ainslie,

This is useful information for me,and I shall look forward to reading the separate post.

All the best,

Bobbie

[ProudHarry in reply to ainslie]

That’s great news regarding improved BMB since taking rux!

[EPguy]

I recall your prior posts we discussed your likely immune reactions to PEG, as I had/have in the extreme.

I'm on Rux since April '23. It's working well on the blood counts. Possibly some weight gain, for me that's a feature not a bug, but don't be surprised if that happens. My Lymphocytes are better on Rux, IFN can reduce them a lot for many. PLT is higher on Rux, near top of range, but my IFN dose was too high.

If you have access to Rux is it a good option. You may have seen posts this year on a new report of its mutation benefit for PV.

I had good counts on HU but its side effects were a pain for me.

I really liked the once or twice monthly dosing of Bes. Rux is two (very expensive) cheap looking pills every day, the cheap HU pills are better looking (silly thoughts).

If you're of light complexion or otherwise at risk for skin cancer extra sun protection is advised, Rux can increase risk esp for the not real bad kind (non-melanoma)

Also be sure to be up to date on the Shingles vax before starting, Rux adds risk here.

[Bobadog in reply to EPguy]

Thanks EP for the helpful post,and great to hear such a positive response to Rux for you,also from a previous Peg patient.

I’m seeing Prof H in a couple of weeks .

Rux is now approved by NICE for PV patients in the UK .

I think Rux may be a good option for me.

I’m back to 6weekly venesections ,since having to stop the Peg ,as HCT creeps up regularly since now and the PV related symptoms are back

I’ll book a shingles vax ,and eat less chocolate and swim more lengths to prevent extra weight!

Many thanks and all the very best,

Bobbie