Myelofibrosis: My ‘crossover’ MPN has transformed... - MPN Voice

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Myelofibrosis

skipperL
skipperL

My ‘crossover’ MPN has transformed to Myelofibrosis ( confirmed by BMB) and my new consultant has decided that the only medication is Ruxolitinib. Can anyone reassure me as to its efficacy, and if they have suffered side effects..... it all sounds quite toxic. My HB has also plunged to 60, and I will be having regular blood transfusions. I am quite depressed as it appears that this new diagnosis is life limiting. Any comments?

SkipperL

22 Replies
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Hi Skipper, Sorry to hear about your MF. I am in the same boat. After 15 years of ET I was just diagnosed with MF. My doctor is keeping me on Hydrea and will be adding Jakafi. He said he will gradually take me off Hydrea. So far I don't need transfusions but I am starting to feel fatigue a bit. Because of my age, 74, and higher WBC I am high risk and fear transformation to AML. I just have to leave this with the Lord. I worry most about my dear wife of 52 years being alone.

There are a number of reviews about Jakafi that are pretty good. Most people do report anemia. I hope you do well with it.

skipperL
skipperL
in reply to ccsial

Thanks for your comments - you are fortunate that you don’t have the overwhelming fatigue yet - I am older than you - I should count myself lucky that the haematologists are bothering with me at all! Best wishes SkipperL

Dear Skipper, I'm really sorry to hear about your MF.

I have been taking Ruxolitinib for more than five years and get on with it extremely well. I have PV and I was diagnosed in 2006. For years, my treatment consisted of periodic venesections (usually 2 or 3 every 3 months), and I took a mini aspirin daily until I developed gastric problems.

I am participating in the Majic Study and that is why I am able to be treated with Rux.

I have found Rux to be very effective in managing my symptoms which were pretty bad …… fatigue and itching/stinging. I take 4 x 5mg tablets at breakfast and 3 x 5mg at dinner time and this regime works very well for me.

Most people on this med find that it causes constipation, wind, weight gain and increased risk of shingles (if you've had chicken pox or shingles in the past). Otherwise, I have not experienced any other side effects. I take one Movicol at bed time to manage the constipation and I try to be sensible about what and how much I eat. I have had shingles once since being on Rux and since then I take an antiviral to prevent a reoccurrence.

I feel loads better now than I did before I started taking Rux and based on I my own experience, I recommend it whole heartedly.

All good wishes; I do hope that you will be feeling much better soon. Lyn

skipperL
skipperL
in reply to Lyn44rms

Very informative - thank you - I hope that if you have been on Rux for five years it will become a long term medication for me as well - and it would be good not to scratch myself at night. I hope that the exhaustion will go and allow me some semblance of a normal life. All good wishes SkipperL

Hi SkipperL I have been on Rux for 7 years. Initially I did need lots of transfusions weekly gradually reducing and now its been a year since my last one. I've been fine on rux and believe it's extended my life. I've had MF for nearly 10 years I dont honestly feel there was any other choice for me. I'm sure you will have read the posts on this forum in connection with MF and realise what's good for one person may be different to someone else. I have every confidence in my haem and made my own decision not to have a stem cell transplant. Have you thought of this option? There is a lot of research going on into these blood cancers and you just never know what could be around the corner for us. Attend a forum if you can they are so very informative and would answer most of your queries. I wish you well try to put this behind you and enjoy your Christmas 2019 is not far behind. I have family coming to stay over the holiday period and I'm going to enjoy every second with them I so hope you'll be able to do the same. Take care Pat

skipperL
skipperL
in reply to Eire66

So glad to hear of your long term Ruxo dosage - it makes me feel more positive for the future. A stem cell transplant unfortunately is not an option as I am too old. I shall go with all the advice - tomorrow I am going to see my consultant when he will decide on the dosage, followed by another two units of blood - it’s never ending! Thank you so much for your reply. skipperL

Eire66
Eire66
in reply to skipperL

Don't despair. Have any questions you want to ask ready for your haem and go with it!! They'll keep a close eye on you but look at it positively I truly believe without rux I wouldn't be here. Just in case I and other people I know that take rux there can b a very urgent need for the loo!! Diarrhoea was a major factor for myself so be prepared just in case - have Imodeum handy it's been a life saver for me. Strong drugs are bound to upset our tums just wanted to forewarn you preparation is everything. Happy Christmas.xx

skipperL
skipperL
in reply to Eire66

Thank you - I always carry Imodium with me as I have IBS as well! Feeling quite positive about starting Ruxo - very hopeful that it will help. All the best SkipperL

I have MF and certainly get on well with Ruxo; u may find u have to tinker with the dosage to start with. I have low Hb so now also need transfusions but the Ruxo keeps my spleen under control. No side effects - in fact for the first year on it I felt great.

I agree with you that a diagnosis of MF normally implies a shorter life expectancy and my advice would be to make sure that u have a good knowledgeable haem who will keep an eye on you and any changing symptoms. The statistics for Ruxo suggest it improves life expectancy.

skipperL
skipperL
in reply to jane13

I feel so much better hearing that you feel well on Ruxo - I am not so worried now! I am having another transfusion tomorrow - and seeing the haem when I believe he will start the dosage. Good luck for 2019

SkipperL

Hidden
Hidden

Hi,

Ruxo worked really well for me. Turned me from an invalid stuck on the couch unable to breath properly or bend over - due to spleen size - to going back to (walking) to work within a week. No side effects.

Had my stem cell transplant 48 days ago. Doing well.

Keep your chin up!

Meatloaf9
Meatloaf9
in reply to Hidden

Hi RobMa, so glad to hear that you are doing well with your SCT. Do you know if there is an age limit on SCT? I read on another site about a person age 75 who had a SCT in Atlanta. May I asy your age? Continued success, live long, and a Merry Christmas to you and your family.

Hidden
Hidden
in reply to Meatloaf9

Hi,

Thank you!

I'm 52 and live in the UK.

SCT is worth a long hard look. I had no choice when it came down to it which made things very simple.

I know there are age limits, but I don't know what they are, sorry.

There is flexibility in the system. speak to your MF/MPN specialist.

Everyone is different! Some "old" people are fitter than "young people!

All the best to you and yours too.

skipperL
skipperL
in reply to Hidden

I am now looking forward to starting Ruxo if the results are so good and hopefully without side effects. Sadly a Stem cell Transplant is out for me as I am too old, but I wish you every success with yours.

all the best,

SkipperL

Dear SkipperL, I’m really sorry to hear your news. All I can do is pray for you and others in a similar position. Sending you best wishes.

skipperL
skipperL
in reply to Wyebird

Thank you - my consultant is optimistic, so I am too! thank you for your care......

SkipperL

Dear SkipperL

I've been on rux for 18 months now, and was diagnosed with MF nearly 2 years ago . Doing fine. The anaemia cause by the rux is now managed by injections of erythropoetin (Aranesp, once every 4 weeks), which helps the bone marrow make more red blood cells. I've had a couple of blood transfusions as well, which give me a better result than the epo but run the risk of iron overload.

Good luck - its worth hanging on in there, I think.

Dear Rachel, I have had another transfusion today ready for the drop in HB when I start Ruxo tomorrow. Unfortunately Epo,which I was on originally, stopped working. Hopefully Ruxo plus regular blood will improve my fatigue. Thanks for your advice.

SkipperL

How are you doing on the ruxnitlib?

I haven’t posted for ages! I have now been on Ruxo since December. I feel very well on it with no side effects apart from several colds and quite a few bouts of diarrhoea which may not be associated with the meds as I have an irritable bowel. I have had no more pain in my spleen, and the dreaded itching has gone. I am however having monthly blood transfusions as my hb levels have dropped to. around 70 at times. All in all, so far, a good outcome. My consultant says that he will up my dosage but not yet. SkipperL

Thank you for the info. Do you get colds because of the Ruxo or did you previously get colds on a regular basis? I have not been given a blood transfusion yet, I am always so tired from low hemoglobin.

I have definitely had more colds and infections - I believe Ruxo lowers the immune system. At the moment I am having a transfusion of two units - so for the next month I shall feel quite bouncy - until it wears off.

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