Am I eating too much or is it a side effect of there Ruxo?

[andrewschorr]

Folks: I work hard at staying in shape and thank God the PMF hasn't sapped my energy yet. And I have an appetite. But I burn calories. So why, after 16 months on ruxolitinib am I getting a "middle." Too much beer? What is your experience?

[JediReject]

Hi Andrew welcome to the forum and thanks for posting the links earlier - very interesting. I guess and it is a guess not many UK peops outside the trials have been lucky enough to be put on Rux though there are a few im aware of. I am 53 and have had PMF 7/8 yrs and my middle is hmm how should I put it - I look pregnant , that'll do. My problem is my very large spleen of course but my tum is generally hard and swollen. Im on HU but due to go on Rux in March and Im interested to know if your joking about the beer or are you able to tolerate a drink or two since taking Rux. I love beer so have a good reason for asking.

You could just be getting to that certain age when no matter how hard you try you pack a paunch. There again if the Rux reduces my spleen I will be able to over-indulge whereas now I get 'full' and may have only one meal a day and some cheese on toast so has your calorie intake crept up maybe. Cheers JR

[beetle in reply to JediReject]

Glad you are getting access to Ruxolitinib. Good luck with it. Please let us know how you get on with it. I understand that when we get to the "certain age" you are referring to we put on weight because our brains have accumulated so much knowledge by then that is all overflows and has to be stored around our bodies! Thus we are not overweight - just pretty darned clever!!!!!

[andrewschorr in reply to beetle]

Cute, Idea. My body is smart and packing away for the winter! I am doing well on ruxo and, happily, get it from the states where my insurance there pays for it totally. The insurance is really expensive but the drug costs a lot more. So I am quite fortunate. I believe everyone needs the opportunity to have their symptoms reversed by this Jak2 inhibitor or another one. We should be suffering.

[JediReject in reply to beetle]

Aye Beetle my friend, it were quite funny really coz I had a chat wi me Hem in Nov about switching to Rux int New Year as my HU wasn't / isn't as effective and the funding via the CDF was agreed prior so I fair skipped into my Jan 14 / 14 appt without a care but when i got there Hems name wasn't ont whiteboard int waitin area, but my spirits were high so I didnt attach owt to it. After'd blood letting me name were called and I gathered me stuff - nearly left me Sun paper but I hadn't perused the problem page fully - I followed a lass wi a crackin waggledance - - if she were a bee, down a corridor into a room where a complete stranger quickly introduced himself and told me my consultant of 7 yrs had RETIRED. Talk about gob-smacked. Ont face of it he's a top guy but he hadn't had time to get up to speed either wit caseload or procedure for sortin me tabs so roll on March - not that I'm one for wishin me life away.

Once I eventually get to sample these new 'sweeties' I will let you know how I go. I think they should market them in a 'Lucky Bag' coz if they don't work you can at least play with the 'Whizz Bang' or the flimsy plane and eat the sweets. .

Cheers JR

[andrewschorr in reply to JediReject]

Thanks. Yes, I can drink beer. And yes, my appetite is good now. Yes I should count calories. But I do wonder if it affects metabolism somehow. It's just around my middle, no where else. But it beats the alternative, of course!

[JediReject in reply to andrewschorr]

Aye, Cheers Andrew, I feel semi re-assured on the beers front but as you are acutely aware we bods are all different so I guess I will have to do my own experimentation and sample many different ales to begin with, it will be a hardship but I HAVE to struggle through that phase, , thereby narrorwing down possible troublesome brews to leave me with a shortlist of suitable contenders which will need detailed sampling over at least 3 mths. Whew all that beery chat is making me thirsty. .

[Hidden]

My husband has been on Rux for at least 16 months. His spleen was very swollen at first, but has now shrunk some, but hisstomach is still swollen. He likes his beer too. Other than the swelling caused by the spleen, I don't think his stomach has swollen anymore though. I have noticed though that his appetite has decreased quite a lot.

Shoosh

[andrewschorr in reply to Hidden]

I have a great appetite just now. So I am trying to stay away from sweets, definitely chocolate croissants of which there are many at bakeries all around my apartment in Barcelona.

[beetle]

Weight gain is touted as one of the positive side effects of Ruxolitinib. I think there is some discussion as to whether the decreased spleen size means that people are actually able to eat more as the stomach is not being compressed or if it a side effect of the drug itself. Many people claim to have put on weight without increasing their food intake. Personally, I have been on Rux since June of last year and have had no reduction in spleen size but am now about 4lbs under the weight I was at the start of treatment. So I guess the answer is it could be the beer or it could be the Rux. Not much of an answer really is it!

[andrewschorr in reply to beetle]

OK we don't have an official survey yet. One of the experts, Dr. Vannucchi, laughed when I asked him about this. He just said smaller spleen equals better ability to eat equals weight gain. Not a problem. A good thing he said. OK I will do more sit-ups! See you at the gym!

[catkinspolymer]

hi everyone ,

after 19 years on HU and baby aspirin and relatively good health I have just been told that my spleen is enlarged and I might be a candidate for the Rux trial. Decision day sometime in April . As to a belly I like to eat and drink well so i cant really blame it on much else. Have to look the part a bit as well.

has anybody any thoughts if going on Rux is a good direction or is it Hobsons choice

all the best town Crier

[selkie in reply to catkinspolymer]

Going on Ruxo is most certainly a good idea! Firstly it is the only way right now to reduce spleen size. Secondly you buy yourself quality of life for 2/3 years. As to the spare tyre, Im female and dislike thoroughly the unfamiliar flab that encircles my midrif! The pregnant belly is extra! That I hope will reduce as Ruxo does its job (Im on it since Oct). The rest i understand is due to slackening muscles as one cannot bend so much or perform the enerjectic tasks one did in the past, due to the enlarged stomach. Selkie

[andrewschorr in reply to catkinspolymer]

I was put on Rux early in my PMF from the States where its easier to get. No trial needed. My spleen shrunk within two weeks, night sweats gone, no itching, more energy. It has really worked for me.

[Twinkly]

As most of you already know ,I'm on the Majic trial ,at addenbrooks Cambridge ,under the watchful eye of prof green ,,( my racing greyhound) he is always on the go ,I was very ill on hYdroxycarbamide ,for 2 years ,every side effect you can name ,,also venesection every 4 weeks,,so I was asked to volunteer ,I am so much better now,with sensible eating ,small size plates ,regular intake of healthy snax ,bread is difficult to digest ,and bloating does come on in the evenings,I couldn't drink fizzy beer or drinks I swell up and can't sleep.I try to work hand in hand with my doctors to make this trial drug work.I report a written diary every day ,in detail.so one day if it works you will all have it available on the NHS..it isn't yet ,,but if you are offered it ask yourself," what have I got to lose" I can always step back if it isn't better for me!! I took control took back my life.. Keep twinkling. Xxx

[catkinspolymer]

well thanks for that input , I will have to see if I am fit enough to go on the the ruxo trial I sse that they check quite a lot like ECG , BMB and at 69 I might not be very good at some of those. All great fun

Oyez to all that

Town crier

[Twinkly in reply to catkinspolymer]

I forgot to tell you town cryer,you do have to have every check redone bloods ,bone marrow,scans,heart n lung checks ,really regularly.also I report every change,for the team to understand. I also carry a card with numbers of my team .its all worth it because I feel well again ...

[catkinspolymer in reply to Twinkly]

Hi twinky , at the moment I feel good but things may change .I am lucky in some ways that HU worked so well for so many years , at the moment its wait and see.

Town crier

[Twinkly in reply to catkinspolymer]

If you need any help or questions answered let me know ,,I have the ear of an excellent team they are so supportive ,I'm in email contact ,I'm sure you are going to be the ideal guy for this exciting new project,, keep twinkling X

[JediReject]

Flippen 'eck Twinkly I'm sure glad I have only to recall a 4 digit number to access my club o/wise I'd be goosed- especially if I had to put a code in to get out. . Fair play to you because you must put many of us . well mainly me really to shame on many fronts - and I take my hat off to you as I've followed your unwavering positive posts over many weeks. You deserve all the success you get in your strive for life. Hope you had a lovelY Valentines Day - Love JR x

[Twinkly]

Hi there J,R. Take a look at my picture ,he is my giant Russian " sasha" I breed and show them ,I fetched them out of Russia.such a life I have had ,wonderful...this sickness is just the next chapter ,you are strong ,unique,stand out in the crowd ,that will get you ruxolitinib ask for what you need at your next appointment..thank you for your kindness it is appreciated ,, Xx

[JediReject]

Aye He;s a 'cracker' fer sure and I admire you once again for your commitment to your 'family' there. I been puttin off replacing my late 'girls' as I was fully expecting having had my BMT by now and I didnt want to leave a new furry friend pining whilst I was in Manchester Royal. If you have any clue of how things might go it helps you plan. . but it aint taht cut and dried.

We could form a MAS - Mutual Appreciation Society, , but I'm very happy just to be your on-line friend V. Take care x

[MichaelS]

Hello 'Andrewschorr', I started on Ruxolitinib on 7th November. I was on a dose of 20mg twice a day. I had to stop taking them after my next haematology clinic on 4th December because my platelets had dropped to 66 from 250. I have since recommmenced taking them at a dose of 10mg twice a day.

I am taking them because my spleen has been enlarged and causing me discomfort and sometimes pain. In November I noticed that the spleen reduced in size within a couple days of taking the Rux', then after coming off it in December the spleen swelled again, but now I am on the new dose it is taking longer to reduce in size.

I noticed that I always seemed hungry after starting the Rux' and I still am hungry most of the time. I too have been told that it is because the spleen takes up less room and the stomach says "I'm not full - I want some more food". I try to control the amount of sweet stuff, but my stomach is still getting fatty, which I don't like at all. I normally exercise but it seems to make little difference. I had to stop exercise because last Monday (10th Feb) I had a hernia operation, and everything seems to be mending well, but no stomach exercises for a while. I'm not on a trial, but the doctors and I are treating it as an experiment and we will learn how to use it over a period of time!

I am embarrassed at the crazy cost of the tablets.

I hope this helps, best wishes, Michael

[andrewschorr in reply to MichaelS]

let's keep in touch and have a weight control program together! Where are you located? I am an American with US meds in Barcelona.

[Twinkly in reply to MichaelS]

Hi MichaelS .it isn't too difficult to have soup ,it's warm and filling in this cold rainy weather, just chop up any veg ,put in a potato to thicken ,salt and garlic ,stock cubes are easy ,cook on the stove ,cut out bread and butter,eat fruit for snax ,,if you need sweet taste ,use honey it's so good for you,cut out cheese ,.a walk round the block between showers,I'm on ruxolitinib too,I'm weighed every clinic visit,I hold the same size quite well.and the important thing is IM WELL,,,,,,,keep twinkling ..