Ruxolitinib and tiredness.

[maestromaverick]

Hi again all . Getting a bit worried . Have been on Ruxolitinib for nearly eight months and initially feeling great , tiredness is descending on me with a vengeance . Never felt so tired even on hydroxy and that's saying something . Bloods are remaining fairly stable but also noticing itching is getting worse and headaches and dizziness are getting worse too . Has anybody else on Rux experienced this . Keep fighting on my friends and stay as well as possible .

[Twinkly]

Hi it's me ! I was told at the start of my trial ,to expect wonderful results to begin with ,then as my system adjusted maybe some side effects would return ,,you see ,, no miracle cure yet ,just trying to make us better ..every visit I'm asked lots of questions by my team ,the doctor in charge tells me we are learning together .he said "you know more about this ruxolitinib than I do "..I fill in a diary every day ,then a question are at the clinic ,fatigue is always top of the list ,I find it's after eating I need a sit down and have to take care not to nap. I try not to ,,but I go to bed earlier at night ,now sleep 4 or 5 hours ,that's good for me..I eat really healthy smaller meals ,bread and flour makes me full.eat snax every 3 hours .a banana ,fruit ,all green veg in the steamer at 5 o'clock .yellow tomatoes are not so acid ,sweet onions now in M,S,in a stocking ..are better for our digestion ,pasta is very filling ,and cheese is OUT....I know it's a life change ,but I try to work with my new body .drink more than eat ,,don't get too full .give up fizzy drinks ,especially in cans ,all that sugar and additives are the poison we don't need ,,my results are so rewarding and I'm doing well for my age ,,( I'm old) if you try a few changes ,it may help ..I do hope so..

Life is very precious My lovely .. Twinkly. Xx

[skodaguy]

You don't say why you take rux, I presume MF. Like you I had a brilliant initial response but now get some fatigue and itching again but nowhere near as bad as before I went on rux. If bloods are OK then unfortunately we have to remember that MF is a progressive disease and the return of symptoms is almost inevitable. I find exercise helps but if I over do it feel wiped out the day after. So I accept that early nights or late lie ins are sometimes needed to let me do what I want.

[JediReject]

Hi Maestrom, As you may recall Im a newbie to Rux, a couple of months, but Ive never slept as well and feel tired most days to the point of exhaustion if ive had a taxing day. I now look forward to dropping into bed most nights which even on the Hydrox I didnt do and actually struggled to get a good nights shut eye. Im hoping my fatigue will lift as I go on with it though.

Let's face it Its got 2 ruddy choices and I will take either as long as there is a benefit in the long term and it staves off going down the BMT road. And as Skodaguy rightly points up that due to the progressive nature of my MF of 8plus yrs I am concious it is slowly marching onward. Keep up the battle my friend. Cheers

[maestromaverick]

Thanks you three for responding . Its PV Skodaguy . Unfortunately Twinkly I've been put on a high fat diet which includes lots of cheese and chocolate and the mandatory high calorie drinks . Don't mind the chocolate and the two glasses of wine a night but so fed up of cheese . But have reached the mighty weight of 53 KGS . Was down to 46 KGS so feeling like mini Arnie now . Spoke to my research nurse Jedi and he said they are getting more reports of symptoms returning after a while on Rux , with tiredness at number one , so don't feel its just me now . As you do Twinkly , I have to do the e diary every day and it has been noted my scores are creeping back up again , but while my bloods remain OK and I'm gaining benefit through improved concentration ( while I'm awake , which isn't long some days ) then they will keep me on Rux but if things get too much worse then it will be back to hydroxy , which I dread . We are all different in how we respond and I sincerely hope Twinkly and Jedi continue to do well but as with yourself Skodaguy , it looks like it may not be my saviour .

[maestromaverick]

Sorry forgot to ask , ( says a lot for improvement in concentration ) but do you guys have a problem with the wind from down south as sometimes I'm achieving liftoff .

[JediReject]

Haha Maestro, very well put. . believe me you are not alone on that one. Being a beer drinker Ive always been a tad windy city but on Rux i have rotten gas all day and night. I was at clinic with a 2 and half hr wait and I daren't let it go. However I would have been seen much sooner so maybe I shouldnt hold back in future. Dunno if there's owt one can take to negate the effect, particularly if you are attending a social event and end up exposing folks to very anti-social odours. Still it clears the way to the buffet. Cheers