Ruxolitinib for PV

[ainslie]

Are there many people on here who are taking Ruxo for PV in UK, how are you doing on it, are you having any side effects, how long have you been on it and what dose are you on. Was it hard to get it in UK as I understand it is not yet approved, did you have to "fail" on Hydra and Interferon. I am looking at the possibility of trying to get on it for my PV, I am in Scotland

[Loubprv Volunteer]

Hi,

Not sure what the position is in Scotland.

I've had PV for 6 years, and take 1100mg HU per week.

My readings are all fine, but even so my haematologist offered to volunteer me for the Majic trial because he knows that aquagenic pruritis is a big problem for me ( Ruxolitinib knocks that on the head with 48hours)

However.

I gave it serious thought for a day or two, and weighed up the side effects, which Ruxolitinib of course has, like all drugs, and decided to stick with HU which, touch wood, I get along with fine.

Reasons?:

I had a 7 month dose of a ghastly antibiotic called Nitrofurantoin, the result of which was a very rare but known side effect called peripheral neuropathy. Serious nerve damage, in my case manifesting itself as stabbing pains in limbs , and constant pins and needles. (treated with drug called Pregabolin which is an antidepressant with side effects of suicidal tendencies, headaches, nausea, constipation, and inability to pass urine - I decided to turn that down too)

After 3 years I think the nerve damage is possibly getting better but I wouldn't like to risk it again.

One of the listed - rare - side effects of Ruxolitinib is peripheral neuropathy which can also make your extremities numb.

Another side effect which has been mentioned on this site is shingles - also nerve related.

For those reasons Ainslie, I decided to stick with HU for the time being on a better the devil you know basis, but as I said, my readings are steady at the moment, and my spleen normal.

I think all drugs, unless absolutely necessary, should be examined from every angle.

Having said that, I know at least two people - Twinkly and Andrew from patient power - for whom Ruxolitinib has transformed their lives. I'm sure there will be many more.

It has like anything got to be your decision if you have the chance to go on the trial!

Good luck, it is indeed a remarkable drug, and I'm sure will be licensed for general use eventually.

Louise

x

[ainslie in reply to Loubprv]

0Hi Louise

thank you for your post, how do you get 1100mg of Hu , I thought it came in 500 in this country although also in 200 and 100 in Australia (I think)

Best Wishes

Ainslie

[Paul42]

Hi

I was put on Ruxo for PV 1st Jan this year. Unfortunately after a month i got shingles which is a side effect for a small amount of people. I think this is because it can have an effect on your immune system, just like any treatment can.

I also became fairly anaemic. We stopped the Ruxo because of the shingles, also put on a course of iron to get my counts back up. Im back next week to see about going back on it.

I didnt go on Hydrea of Inteferon before as this was considered best option to shrink my spleen.

Paul

[ainslie in reply to Paul42]

Hi Paul

thanks for your post,what were your counts on Ruxo, you said you were anemic, what was your haemoglobin, Hct, MCV, RBC. WBC and platelets and Ferritin. I thought the idea of Ruxo was to lower haemoglobin, so presumably if you were anemic is it not a matter of taking less of the drug so your haemoglobin goes back up. What dose were you on. I have heard about the shingles as a poss side on Ruxo, Clair Harrison mentions it on a U tube video but says its quite treatable, how did they treat your shingles.

Best

Ainslie

[Paul42 in reply to ainslie]

Hi

My HGB was 10.1, ferritin down to 14 all others ok.

I do have other issues that can contribute to low ferriting and HGB, i have some gastric varices caused by the additional pressure my enlarged spleen causes. These ooze blood, or so they think.

The only reason i think RUXO contributed was that prior to going on it i was stable at about 14.3 for about a year.

My problem is my spleen which is considered massive.

I dont think the idea of Ruxo is to 'lower' your HGB as such, however by inihibiting the Jak2 gene, this is the desired end point in PV. By lowering it to a normal level.

I was put on Acilivor as soon as i got my rash with Shingles, a high does for a week. Because prior to my rash coming out i had felt soreness and pain i knew i was suspected as having shingles as i had been to the GP. So once the first of the rash appeared i got on it and my rash pretty much went within a week. I am now on a much lower dose of Acilivor 2 times a day and could be on for foreseeable future to prevent it coming back.

The chances of shingles are low, i dont think it helped with me because i already have a low lymphocyte count so my immune system is pretty rubbish anyway.

I less than 2% of people on Ruxo get shingles.

I havent made my mind up yet if to go back on. I know the concerns around my spleen, and know the knock on effects it is causing.

I really dont know what to do, for 8 months last year i did great, had great blood counts with no meds etc....i was dosing up on plenty of Vitc and i felt good. Then August time i suddenly had one bug after another and felt lousy for rest of the year.

Big decisions.

Paul

[ainslie in reply to Paul42]

Paul

you said you were dosing up on Vit C, did the vitamin C not raise your Hct etc as it increases iron absorbtion?

Rgds

Ainslie

[Paul42 in reply to ainslie]

Hi

No it didnt

Paul

[Paul42 in reply to Paul42]

In fairness, i dont take it with meals so that could be why

[Twinkly]

Hi my name is twinkly ,,I'm on the Majic trial so I have been taking ruxolitinib since August 18 months ago .i was given HU for 18 months at first but it was really difficult to cope with the side effects ,,( fatigue ,flushing ,shivers ,hair loss. ) my readings in clinic were irratic so I had venesection regularly which was un pleasant ..my documents were read by Clare Harrison at st Thomases X guys ,,,my own prof green recommend ed this change for me ,( he has secured his wings and harp ,booked his cloud ) ...I had lots of tests ,including bone marrow ,then was accepted onto the trial ,, now I look and feel better ,,my readings are good at clinic ,,I follow a really strict healthy eating program ,don't drink alcohol ..don't smoke ,exercise every day ,walking my dogs ,drink juice and filtered water ,,you may think it's a bit extreme ,but you see I intend to make it to very old bones ,so if I find a routine that works for me ,,I try it ..nothing to loose ,,everything to gain ..good luck to you whatever your decision ....twinkly. Xx

[ainslie in reply to Twinkly]

Hi Twinkly

thanks for your reply, presumably you got on Majic because you could not tolerate HU?, did they not also try to put you on INF/Pegasys as its cheaper. What dose are you on, have you had any sides, where you on high dose HU. Glad to hear your doing so well, I also lead the organic life, was green juicing bad had to stop as it was pushing up my Hct, there is a lot of iron and Vit C in green juice and I am on venisections so have to control iron intake.

Best

Ainslie

[Twinkly in reply to ainslie]

Hi ainslie ,,, no I was not offered any other different drugs at all ,I now take 2 in the morning 3 afternoons ,,and blood thinner clopitorol ..

I get cold hands and feet ,,my nails are poor and ridged ,,but I have arthritis with age ,wear and tear ,,but the ruxolitinib seems to help with the joint pain ..I feel o,k, and there is no comparison to the HU ..I was taking before ..I hope you get what you need to feel better soon..

[ainslie in reply to Twinkly]

thanks Twinkly are they 5mg per pill

[Twinkly in reply to ainslie]

That's right ,,,

[ainslie]

so that's £50,000 a years worth, I wondered if I had to buy it if 5mg a day would be enough (£10,000) but doesn't look like it would be enough,

[Loubprv Volunteer]

Hi Ainslie,

Sorry, slight miscalculation on my part.

I take 1000mg per day for 5 days a week and 500mg a day on two days per week. I also have a venesection as and when required - averages about every 2 months.

What sort of meds are you on at the moment?

Louise

[SusanFletch]

Hello there. I had many many concerns before starting on Ruxolitinib nearly three years ago. The nurse said "try it what do you have to lose. If you don't get on with it you can always come of it."

I had shingles and at the start low HGB but Ruxolitinib gave me my life back. It is hard for me to remember that I have an illness most of the time.

I have varices which are not related to Rux but to the pressure of the spleen on the portal vein. Pre rux I had regular tie offs. But not now. The spleen is much reduced and so is the pressure.

I'm really really glad I tried it. I have learnt that we all react differently and I am so glad I gave myself the chance to find out how this wonderful drug would work for me.

[Paul42 in reply to SusanFletch]

Hi

How big was your spleen, and how long did i take to see signs of reducing?

Did they stop the RUXO at all when you got Shingles

Paul

[SusanFletch in reply to Paul42]

Can't give you a measurement but it was very visible to others. Couldn't sit easily and could only sleep on my back. The pressure on the portal vein not only caused varices but the most painful piles. Does that give you the picture? My spleen started reducing very quickly and in all 3 dimensions.

No they didn't stop the rux when I had shingles perhaps because at the time they were unaware of the link.

I was so determined not to take Rux because of all I had read........ I was so wrong. I only write this to say that it seems to me that suck it and see is the best test. You will always be in control. And whilst provision of the drug is so insecure because of the changes taking place in the Cancer Drug Fund if it is being offered think very hard before saying no.

Best of luck.

[Paul42 in reply to SusanFletch]

I see what you mean about the cancer drugs fund......i think im going to go back on it provided my blood counts have recovered ok this week

[ainslie in reply to SusanFletch]

Caroleen

are you Ruxo for PV?, what dose are you on, you mentioned shingles, how did you get rid of it, shingles seems to be one of the main sides.

You mentioned you read lots of bad things abut Ruxo before trying it, did you read that anywhere in particular or just google. Glad to hear your doing so well on /ruxo. Who qualifies for a grant from the "Drug Fund", do you have to fail on the other drugs first.

Rgds

Anslie

[Mazcd Partner MPNVoice in reply to ainslie]

Hi Ainslie, the Cancer Drugs Fund is for people in England only, Scotland, Wales and N Ireland decide on how to spend their money on health and so far haven't decided on a similar programme, you could talk to your haematologist about being put forward for the MAJIC trial, The Beatson West of Scotland Cancer Centre is one of the participating centres for the trial, you will need to meet certain criteria to be considered for the trial, if you have been unable to tolerate other medication, ie Hydroxycarbamide, being one of them. If you would like me to send you a booklet on Ruxolitinib let me have your postal address, send it to me at [e-mail] or by private message on here. Best wishes, Maz

[SusanFletch in reply to ainslie]

No I have myelofibrosis. I was just trying to make the point that sometimes you have to give things a go. I was reading the information coming out fom the clinical trials in the early days of the drug and in my judgement at that time thinking purely of my symptoms I decided not to go for Ruxolitinib. But I was so wrong and will ever be greatful to the nurse that enabled me to see that. Shingles was cured with Aciclovir.

Best of luck

Caroleen