Just curious if anyone else has had similar results in their initial journey with Ruxolitinib?
It is only my third week (on Jakafi), and perhaps I am expecting too much too soon...
I am sleeping better, my itching seems to have abated, and I am getting the occasional headaches but overall I also feel like I have slightly more energy and my mind seems less clouded (so much so that I am equivocating over a return to my studies etc...) It was not so long ago just the idea of exercising and the stress of assignments and exams was all quite depressing...
As I sit here and compose this message my stomach again feels quite bloated , however, I have been exercising now consistently since just prior to commencing the Ruxolitinib (every other day 1.5 hours of cycling, jogging and aerobic exercise sets). Afterwards, post-exercise, I hit the wall for a time when the adrenaline relents etc...
My diet is largely vegetarian with some seafood, usually fruit whole or via my Nutri-bullett etc... I am not certain that I can exercise any more than I am presently...
I have also decided to forgo my usual glass of vino with my evening meal to see whether or not this makes any real difference...
Any ideas are most welcome...
Steve
(Sydney)
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Thanks for your reply, and of course we have spoken before. I do hope that things are beginning to improve for you soon too... As I have said before, I am amazed that anyone is able to work full-time with our MF condition (s) etc...
Yes, I was also expecting to see a reduction in my platelets, and I am presently at a loss to understand why I am experiencing this effect of opposite values... (?)
My platelets were down to 537 just prior to commencing Ruxolitinib (when still taking Interferon bi-daily). Then I had about a week's break from any med's while awaiting the Ruxo' script's arrival etc... and my platelets instantly bounced back up to 693, however, my last bloods showed at 791 after circa three (3) weeks of Ruxo'?
My Haematologist is vacationing at the present and will not return until circa January 27. The duty Haem' suggested that this blood count was not too bad (791)? and that I would be okay until she has returned etc... When I did experience my TIA late August 2015, my bloods were at 1,700, therefore, hopefully they are correct in their assumptions.
Incidentally, I have also been keeping a close eye on my cholesterol levels, and they have seen a significant bounce from 4. 0 to 5.6, and now 5.1 since commencing the Ruxo'.
I suppose with people in the later phases of our conditions, weight gains might be viewed as highly desirable. However, my body physique is that of a rugby player and if there is one more thing that I do not need it is a weight problem... Perhaps if I just stopped consuming sustenance altogether and took vitamins only... perhaps that might work. Any advice is of course most welcome...
That makes a bit more sense now, maybe your body has a 'natural' level of around 1,700, the inteferon lowered it significantly, maybe Rux doesnt have the same affect as inteferon for lowering platelets? My 'natural' level was around 400 and now 200.
So maybe your platelets will level out to what they are now? If you stopped meds altogether they probably would be up to the 1,700 mark again?
Dont quote me for sure but I think platelet 'life cycles' are much shorter than things like red blood cells, a red blood cell is about 3 months and a platelet around 8 days, so your body is likely to see changes in platelet counts more quickly than perhaps other blood counts.
Do you have MF? How are your other blood counts doing and how are they compared with pre inteferon and now on Rux?
Regards weight loss, for me its going to be strick diet and exercise and see how i go.
Yes, I was initially diagnosed as ET, then Post ET/MF, and then early MF...
My BMB indicated a grade 2 level of bone marrow scarring, and so they then moved to treat me as early MF...
As I mentioned earlier in this post, perhaps I need to be far more patient with my results, however, the rising platelets do seem to be at odds with my research on the subject etc... and will therefore remain a mystery for the present...
Thanks Paul, I really appreciate your feedback.
Steve
Hi Steve, I've been taking Ruxolitinib for a year now and, on the whole, I feel far better than I did before starting it. The only thing I'm not so happy about is the 2 stone weight gain that has gradually slipped on over the year! I'm not a big eater and hardly drink any alcohol, although I do have an occasional glass of wine, maybe 1-2 a month, so feel a bit irritated I've put so much on. As usual my new year resolution is to exercise more so hopefully that will help. My blood counts have been really good throughout the year so I can't praise Ruxolitinib enough. Like you, the clearing of my foggy head was one of the first revelations, along with saying farewell to the skin itching, I couldn't believe how effective it was at quickly clearing these symptoms. As always Steve, drink plenty of water and I hope you continue to feel better. Best wishes, Christine
Thanks for your response and belated New Year's tidings...
Yes, I too am at a loss to understand why the opposite values are appearing in my bloods, and the weight gains considering I really do not consume all that much on a daily basis.
Wonderful not to be itching though...
For years, I have always partaken in my customary evening glass or two of wine, but perhaps now is a good time to relent and change that almost fully automated nuance...
I usually skip breakfast and rarely ever have a lunch, just green tea with lemon or lime juice...
As you speculate Christine... perhaps a diet of just water and vitamins might be the new MF-MPN diet craze for 2017?
I shall undertake some research and I will let you know in due course...
I have been on Ruxolitinib (Jakavi) for about 4 months now (in my case post-SCT due to intolerance of cotisone taken to combat liver cGvHD) and also have noticed a significant wait increase ~ 3 stone and a 'horrible' girth.
I feel most depressed about it, but the consultant isn't worried about it.
I hesitate about going on a diet since I'm worried that my body probably needs all the nutrients it can get to combate my post SCT, especially in winter!
If anyone has any ideas on how to loose weight without putting a 'weakened body' at risk then I would be very grateful.
Thanks for your reply. Yes, gaining weight depresses me also... I have put on circa 1.5 stone or 8 kg. I am exercising (mainly aerobic types) with just enough weights so that my muscles will continue to carry my own body etc... (push-ups, sit-ups, torso twists, stretching my limbs regularly, and some walking, jogging and now cycling). Most importantly for me is my breathing exercises, as I am constantly shorter and shorter of breath, and this area seems to benefit first in my own observations.
I still have to really drag myself into doing it each time, but I am hoping that it will prove beneficial in the longer run...
Maybe you should see a Physiologist about what stretching (toning), and light exercises that include breathing might best serve you and your needs?
I see a physio to help with exercises - a real torture !!
Apart from being very short of breath I have a form of GvHD that gets to my muscles and makes walking very difficult and painful ; I grin and bear it but when I get to the end of my 30 minute stint I've had enough.
Cross fingers that things get better for when the warmer weather comes back.
I don't know if my experience is helpful or not. I have been taking Rux for over 4 years now and also suffered from a two stone weight gain. I felt bloated and uncomfortable without understanding why. I couldn't decide if it was my stomach that was bloated or my bowels. I decided to manage my diet with a view to losing weight. I've now lost over a stone and no longer feel bloated at all. I am not big on exercise because I have a problem with my feet. So my weight loss was really down to examining my diet. Pre Rux I wasn't able to maintain my weight and started to eat high calorie foods that I really like but didn't eat because they were full of sugar and fats etc. I don't think Rux was wholly to blame for my excess weight. I think it was a combination of the drug, the sudden ability to eat again and all those tempting things that I had let back in. I also came to the conclusion that my bloating was down to my bowels. I have given up drinking but never drank very much anyway, it just seemed sensible to support my liver which has some fibrosis as well. My diet is just a normal mix but I manage my carbohydrate intake much better.
If I could walk more I would as I know this brings many other positive benefits and watching my husband with his daily routine of a managed diet and 10thousand plus steps a day on the treadmill I see just what can be achieved.
The research that remains ongoing concerning Ruxolitinib, certainly suggests that it is not uncommon to gain weight appreciably in many cases.
Obviously, our body chemistry has something to say in these matters as does as genetic heritage no doubt...
I guess, I too really ought to completely abstain from my customary drop of the grape with my evening meal...
Generally speaking, I am always much sharper mentally, when I am not partaking in alcoholic beverages. However, I do find socialising far less stimulating (conversationally at least).
Thank you Susan, as we can both see from the responses so far received, we are certainly not alone in our weight gains dilemma...
I shall see how I might improve my diet (less carbohydrates you say...)
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