Ruxolitinib: I would be really grateful those of... - MPN Voice

MPN Voice

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Ruxolitinib

Joe500
Joe500

I would be really grateful those of you taking Ruxolitinib could tell me the benefits and problems they've experienced as I may be offered it in a few weeks time. I put a lot of info in a reply (to jr3093) now realised it would've been better to put my question in a separate post! Can give more info again if needed. I wonder about it lowering platelets as mine are only 56.

Thank you.

36 Replies
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Hidden
Hidden

Hi Joe, I have only positive things to say about the Ruxolitinib, in fact I didn't realise how badly I felt until I felt better about 48 hours after the first dose! Fortunately I haven't suffered any of the scary side-effects and continue to feel well 18 months on. My blood counts all remained stable so I didn't need any intervention for that. I know everyone experiences this drug differently, but I thought I'd kick off your replies with a positive report! I will admit it took a great deal of courage to start this medication as I thought I felt well and didn't want to upset that, but it clears away something called cytokines which are the pesky things that cloud your thoughts and cause other symptoms of the condition, so feeling better came as a really pleasant surprise!

Take care and I hope you have a positive experience too.

Christine

Joe500
Joe500 in reply to Hidden

Thank you Christine. That's very encouraging and I hope you continue to be so well.

Bigmann1
Bigmann1 in reply to Hidden

Ct 1958

Hey how are you doing? Rexo still working?

Hidden
Hidden in reply to Bigmann1

Hi Bigmann, yes, happy to report still going well 3 years into taking Ruxolitinib. Thanks for asking, it will be a scary day when it stops working and I have to change meds, but I guess that day will come eventually, hopefully by then those wonderful scientists and doctors might have found a cure for us! Are you taking or about to start Ruxolitinib?

Bigmann1
Bigmann1 in reply to Hidden

Yes I began taking it 2 weeks ago after being diagnosed with post et mf. Unfortunately caught a throat infection and my hemo asked me to stop taking the drug for a couple of days. I will restart it on Wednesday. I’m still in shock about diagnosis but I know I just have to keep the faith. If you have any advise for me I would appreciate it. I’m 65 and dr told me that SCT would not be an option.

Thanks

Bigmann1
Bigmann1 in reply to Bigmann1

Also wanted to ask you if you thought it slowed down your progression. I’ve heard mixed reviews on this. My hem things it will just help with symptoms and not progression. I was disappointed when he told me that.

Hidden
Hidden in reply to Bigmann1

Oh I sympathise with you, it is a real body-blow getting the MF diagnosis. I'd had 17 years of relatively symptom free PV without any meds required so came as a double blow having to take Ruxolitinib as well, but I was lucky and had a good response and time does soften the blow and shock. It's a shame you had the throat infection so soon after starting, but the shock and stress would've weakened your immune system too. As for disease progression, I really don't know and try not to worry about it too much as I believe worrying won't improve anything. I've learnt to take each day as it comes and appreciate the good days! There are days when I don't feel great, but I accept that, hunker down and look forward to a better next day. I really hope you feel better soon Bigmann1, try to stay positive, and please don't hesitate to message me if I can help any further.

Hi

I found HU so awful that I couldn't tolerate it: dreadful anxiety and increased tiredness. I posted about that at the time.

I too asked people on this site about rux, and decided when I heard the replies that if I was offered it I would take it. The good small print is that there is some evidence that it prolongs life. I didn't have an enlarged spleen, so for me the spleen reduction effect wasn't of any great value. My platelets were also about 550, and have now come into the normal range.

However, I've been told the numbers don't necessarily mean a lot clinically as with MPNs the blood cells are often ineffective. So the counts can look normal but your blood still isn't functioning very well.

You have to take rux on an exact time table, eaxh dose 12 hrs apart, and mustn't stop taking it suddenly. So I carry some tabs with me at all times in case I get held up in traffic/delayed and can't get back home to my main supply. Oh, and you have to drink a full glass of water with each dose, so as well as carrying the tabs I also carry a small bottle of water.

I'm moving on to splitting the same total daily dose into 3 rather than 2 doses, as that might give me a more stable blood level. I had a gastric bypass that means that the pharmacokinetics ( lovely word) of drugs can be different for me. Some I'll absorb faster, some slower. And no, no one seems to know which.

The rux has reduced my haemaoglobin levels, so I have recently had a blood transfusion, but I do feel better all round since taking it.

I'd make the same decision again.

All the best.

Thank you- a lot to take in! I'm a bit confused about platelets- just checked and mine are only 59 ( I understand the normal range is 143-332). If they go below 50 I can't start Rux. It seems some people's platelets are too high & Rux brings them down but mine are low- something to discuss with my haematologist.

Hi

Interested to read your comments about a timetable, I am prescribed it to take 8am and 5pm so not 12 hours apart.

Did you get told that or did you read it somewhere?

Paul

Hi

I was told to be scrupulous about the timing, as the drug has a short half life and the levels mustn't drop. However, that was what I was told in relation to me, and there might be other factors for you.

If anyone out there is a pharmacologist and can explain more that would be great.

Yes would be interesting to know

Hello Joe

I've been on Rux since Feb this year (I have MF, post-ET). My symptoms were enlarged spleen and raised white blood cells. My spleen very quickly reduced in size (my haematologist can't feel it now) and my white blood cell count has reduced. My red blood cell count has however dropped and I'm slightly anaemic. Had started off on 2 x 20mg a day and now on 2 x 10 mg a day. Still feel slightly anaemic so I'll be interested to see if my dose is reduced further after my next appointment.

I generally however feel better. Certainly don't have the headaches I suffered from and I believe I feel I have more energy, despite being a bit anaemic.

Best of luck with it.

Paula

Joe500
Joe500 in reply to pj1963

Thank you. Good luck with your continued treatment.

Thank you Paula. I'm hoping my energy levels can be improved. I hope the new dose suits you.

Ruxo is fabulous!

reduces fatigue, makes u feel happier (wonder if HU a mild depressant?), reduced enlarged spleen.

But best of all, my worry was exactly the same as yours, platelets 49 at worst, we reduced my dose of HU just before starting Ruxo so my platelets higher c 90 when I started. Platelets initially went down, we reduced Ruxo dose, platelets now in normal range! Unfortunately Hb, which had been steady as a rock for years within normal range on HU, is now a bit low, I guess because Ruxo works in a different way to HU.

Good luck - suggest blood tests at weekly intervals when u first start Ruxo to check platelets, but remember mine went down initially then stabilised at normal range on lower dose of Ruxo.

Joe500
Joe500 in reply to jane13

That's really encouraging regarding WCC. Thank you for sharing your experience

Hello Joe, I took ruxolitinib for over two years as part of a trial. I really liked it. I found it easy to take and no noticeable side effects. It very quickly shrunk my spleen markedly and in the beginning had the desired effect on all blood lines. However my platelets didn't come down to a desired level and an increase in the drug to deal with that strongly effected my HGB. After I had a TIA I had to either take enough ruxolitinib to get platelets below 400 which would have probably meant blood transfusions, or come out of the trial. I opted for the latter, sadly. I really liked taking it. I remember there being quite a lenient length of time to take the dose which I took morning and evening (for a while midday as well).

Joe500
Joe500 in reply to JSKly

Thank you for your reply and I'm sorry to hear you had to stop Rux. I wish you well with your current treatment.

Hey Joe... :0)

I always find it quite a fascination to read all the posts concerning questions on who is taking Ruxolitinib, and for which MPN etc.

Firstly, which MPN do you have Joe & what treatment are you currently on?

Secondly, as some else has reiterated above, we all can respond somewhat differently to various cytotoxic medications, and what is good for one is not always true for another...

Hence, your medical team really are the best people to advise you here, I believe.

My platelets are the complete opposite of yours, in that they tend to float around the 700-1M level. I have already had one TIA, prior to diagnosis, and if my platelets continue to remain stubborn... I might be seeking something like a combination therapy to solve the mystery...(?) Both my Hb & Ht are dropping and my renal system is also beginning to fail, and that is exacerbated via the Ruxolitinib. Hence, while I do have many improved symptoms (most of the time), if Ruxolitinib is causing me to suffer from Renal failure... what is the point? I am also MF - Post ET (diagnosed May 2016).

Having really low platelets, can also be a real problem so be very clear on this point. For while I would reflect in a similar positive generality to many of those above. Starting Ruxolitinib, is not something that should be done lightly.

One of the side-effects that I am currently experiencing is a form of acne on my head. I am (58), and I have never had acne in my short life. However, one of the effects of taking Jakafi is that it can reactivate viruses that might be latent in our systems...

So keep all this in mind. Apparently: TB, Hepatitis, chickenpox, and Herpes are among them and I have been reliably informed by others( on this site) that the 'Shingles' can be an extremely painful side-effect, in some cases...

In most cases, I believe that it is now standard practice to prescribe a prophylactic to deal with the possibly of latent virus reactivation like 'Acyclovir'.

I am not trying frighten you away from taking Ruxolitinib, I am simply suggesting that dependent upon a plethora of variables that this treatment may not be for everyone...

I am sure that your medical team will have a fairly good idea of what it is you need... However, you can always seek a second opinion, I certainly did.

In any event... very best wishes Joe.

Steve

(Sydney)

tuffetgal
tuffetgal in reply to socrates_8

hi steve

i have e.t with jak2 . was diagnosed two years ago. tried hu once and felt like my skin was on fire, became nauseated, sweating etc. was going for an early morning walk in florida when this happened, so had brief mild sun exposure. didn;t take anymore after that. i am vegetarian, which helps my cholesterol level, to discourage platelet stickiness. my platelet count has been pretty steady at 900 or so, i take policosonal for cholesterol and l-arginine to dialate blood vessels, which makes small clots n pass easily. i also drink at least eight glasses of water a day,a absolute must, to thin blood. so far so good. no tia's or any other serious effects. so take any of this info you think might work for you. by the way.. i am seventy five years young. :+)

Joe500
Joe500 in reply to socrates_8

Steve, thank you for your reply. I thought had replied to thank you for your observations- so helpful to hear negatives as well as positives. I agree that my haematologist will know best. I had PV for 27 years, diagnosed aged 46. Lived well with venesection every six weeks. On meds for side effects of MPN-acne rosacea & gout. Progresssion to MF three years ago- enlarged spleen, low WCC , quite bad fatigue but on no active treatment yet. Haematologist hopes MDT will agree to me going on Rux. I find out this week. I am sorry you have complications affecting renal function.- it sounds like you have a lot to cope with and I wish you all the best.

socrates_8
socrates_8 in reply to Joe500

Morning Joe...

You are most welcome of course. It is interesting, as you seem to be implying that the 'acne rosacea' might be influenced by the Hydroxy' (HU), when in my case - I simply could not tolerate the HU for very long, nor Interferon Alpha injections, and I was eventually re-diagnosed as MF.

Since being on Ruxolitinib, (which is an immunosuppressive treatment - 25mg bid), I also have become anaemic and at further risk of other infections.

I am currently treating the 'acne rosacea' w/ a daily antibiotic and a steroid solution known as Novisone. Thus far, the effects are marginally improved as long as I do not exacerbate them by scratching etc. However, I am firmly convinced this appearance ov 'acne rosacea' is due to the immunosuppressive changes to my system. Naturally, I may be mistaken, however, I am not one who gives much credence to coincidence.

Best wishes Joe & bon chance

Steve

Thank you- it's really helpful to hear about risks as well as benefits. I had PV for 28 years and did well with regular venesection but over two years ago it progressed to probable myelofibrosis. I'm on medication for acne rosacea and gout which are both side effects of the MPN, otherwise I'm not on any other treatment for my MPN. I agree , my haematologist has the best understanding of what would benefit me. I trust his judgement but simply want to be as informed as possible . All there replies are really helpful. Thank you to you all.

was diagnosed with PVR 1983 and was on hydroxycarbamide most of the time, in various doses until 2013 when I changed to Rux. The PV changed to ME probably in 2010! Rux was very good for me. The spleen disappeared in a couple of days and so did the rosescia on my face, and the horrible mouth ulcers have stopped.. I started on 20mg twice a day but I rapidly became anaemic so I was changed to 10mg twice a day and everything seems very good. I take the tablets at 6.45am each day and usually 6.45pm, except when I am out and then it will often be taken at 6.20pm. Sometimes I am much later but it doesn't seem to be a problem. I was very surprised when I had a cataract operation in February this year when the nurse put a band on my wrist and tips me I was allergic to Hydrea! This is the basic element in hydroxcarbamide I believe, which I had been using for 30 years!

Two problems associated with Rux in my case is an increase of weight and a rise in cholesterol, which are known side effects.

I hope this helps and next wishes to all

Michael

That's really helpful and encouraging Michael. I have acne rosacea and am continuously on antibiotics for it. Shocking that you were/ are allergic to Hydrea??!! I am glad you are doing well now. Thank you for your reply. Best wishes

Hi Joe,

I was diagnosed with myelofibrosis in 2010. Managed to get Ruxolitinib on compassionate grounds 4 years back. It’s now available in Australia on our benefit scheme. So I am an early user and in the 8th year of this disease.

Benefits are no pruritus, bone aches, night sweats, loss of weight. Spleen is now normal sized. I was transfusion dependant but my haemaglobin has stabilised. Yes I still am anemic and I get dizzy spells, I tire easily. But as a long time user I reckon Ruxolitinib is in my case a lifesaver...Go for it man

PeterNB
PeterNB in reply to PeterNB

Oh and my platelets are within normal range

Bigmann1
Bigmann1 in reply to PeterNB

Hi peternb

Glad to hear you have great success on this. Diagnosed three weeks ago with mf Dr prescribed rexo right away. How are you feeling? Are you still taking it?

PeterNB
PeterNB in reply to Bigmann1

Yes I am still taking it. I have reduced the Rico from 20 twice a day to 15mg twice a day. I persuaded my haematologist that it would be worth a try. The reasoning was that I felt after 4 years I wa getting some toxic effects (this can happen) Also my platelets were 140 and well controlled. The result has been my haemaglobin has improved and my deoenance on transfusion dramatically lessened, my white cells rocketed to 44 and I was worried that I was transforming into CML (about 20% of us do). But my specialist says NO there is no worry at this stage and they have stabilised a bit going Dow to about 30. My haemaglobin has stayed steady at 93 for 6 weeks now and I am quite delighted. My advice to all is keep reading all you can about this disease and do not be afraid to rigorously question your doctors. Best of health to you...Pete

Bigmann1
Bigmann1 in reply to PeterNB

Yes I try and ask many questions but feel my hemo doesn’t want to tell me any more bad news. Maybe he things my condition is worse I don’t know. Do you know what level you were at when you started rexo? Do you have any other symptoms?

PeterNB
PeterNB in reply to Bigmann1

My Doctors keep trying to put me on antidepressants. They think I must be depressed because I question so much. They are starting to understand that I am a big boy and expect to know what is going on. They hate to give bad news. Your condition may be worsening, or your Doctor (like mine) does not really know. The Ruxolitinib is a great drug and you should feel improvement from now on. We are all different and Docs try to play it safe by easing our minds. I cannot tell what stage I was in when diagnosed in 2010 and much less was known back then. I have the Jason Kinase v6174f gene that appears to be a marker. I no longer have bone aches or pruritus. I get breathless quite easily due to aenemia. I used to have transfusions wen Hm got below 70 but now it happens at 80 because of angina and lightheaded ness, dizzy spells. But I do not feel under mortal threat even tho I am 78 next month. My suggestion to you is reAd everything you can on MF, I do an feel that gives me more control and respect from my doctors. It also establishes a pattern of openess. But it is what it is and there is not much we can do about this. So stop worrying and enjoy life. There are new drugs being tested, one called Pacritinib looks promising as it relieves dependence on transfusions.

Hope I have helped a little and not caused further worry.

Regards...Pete

Bigmann1
Bigmann1 in reply to PeterNB

I have jak 2 as well. I’m 65 years old and have been diagnosed for 15 years with et. By no means did you make me worry more at all. Actually your a case that gives me hope. Seems as though you have a slow progressed case I hope and pray it stays that way. I heard of Pacritinib I hope it clears and is effective. I agree with your insipiration I just found this news out so I’m still scrambling for answers I guess. Thank you for your post

Thank you Peter. I have been on the lowest dose for about six weeks now, with a view to increasing it. I was amazed at the speed with which I benefitted. Much less debilitated and much more energy after only a week! I did an eight mile charity walk which I couldn't have contemplated before! My platelets were down to 58 before Ruxolitinib but after four weeks they were up to 132. White count improving from 20 to 14. Spleen is shrinking. All good so far!

Hi Joe, when you say the lowest dose that would be 5mg twice a day. If that is reducing spleen size (mine reduced to normal on Ruxolitinib 20mg twice a day) that is Kool. Your platelets appear to be in the normal range and white cells not to high. How is your haemaglobin? If that is holding reasonably well then there may not be a need to increase your dose as Ruxo exacerbates Aenemia somewhat. Now I am not a doctor so question your doctors they should be able to put you right. Best Wishes...Pete

Joe500
Joe500 in reply to PeterNB

Just an update after being on Ruxolitinib for 16 months. I went up to 10 mg twice a day after 3 months. It has certainly helped but the Myelofibrosis is progressing. My haematologist says it’s progressing slowly -I hope that continues to be the case. I’m anaemic now - gone from 126 to 100 over the last 12 months. I do get fatigued and a bit breathless but still manage to do quite a lot , including walking a couple of miles or more ( not too bad at age 79). My spleen , although reduced a bit, is still enlarged.

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