I hope all are happy and mostly well with their various MPNs etc...
Just a quick question for anyone who might be able to shed some light.
My diagnosis was changed from ET to Myelofibrosis (CALR+) in late December 2016, and I have been taking 20mg x2 per day of Jakafi (along w/ aspirin x1 & Acclovir 800mg x2 per day), since that time.
Generally, I seem to have slightly more energy most days, while on others I just hit a wall of fatigue, and all I seem to be able to do is sleep... Nausea? Good & bad days; aches and pains are intermittent but I still do not sleep very well at all... My itchiness is all but completely gone (YAY!
Prior to commencing the Jakafi (Ruxolitinib) in December 2016, I was on Interferon (3M) every two (2) days, and my platelets had come right down to 537, before swapping over my med's. Since then my bloods were:
693; 791; 740 & 795 (today)
All my other vitals are looking on the improve, and my recent foray into my 12 week exercise regime has already seen me shed 8-9kg in a tad over 5 weeks...
My question for any and all my MPN family is:
Can anyone explain why my Platelets might now bouncing around at such high levels?
The only thing I have changed is recommenced taking a multiB vitamin because I tend to eat so very little these days...
Has anyone had any problems with taking vitamins?
I will see my specialist next Friday but I have sent her through my latest results...
I am a tad concerned of course because I know when I am exercising that my Platelets will be rising even higher too, and I do not want to risk a further TIA...
Thank you all in advance...
Steve
(Sydney)
Written by
socrates_8
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Hi Steve my friend, whilst can't explain reason platelets on rise (think more common they reduced) I think it affects about a third of MF patients taking Ruxolitinib / Jakafi. I would expect your consultant to review and possibly reduce your dose to 15mg X2 to counter raised level. Though It can take a few months for your counts to stabilise.
Well done on your weight loss result so far. Keep well buddy.
Interesting is it not, the rising platelets I mean...
Normally, the higher the platelets the higher the initial dosage I was told via the literature and my Haematology specialist. I was wondering if they might increase the dose rather than decrease?
It will be interesting to see what she recommends.
Chris, did you ever take any vitamins, and did they affect any of your platelet results in any way?
Because really that is the only thing that has altered in the chemical sense, as far as I am aware in any event...
As can be seen by my previous results, they are still trending upwards (693; 791; 740 & 795)
I guess it's a wait and watch moment to be sure that they are not allowed to become much higher...
Bloods might need to become more frequently read etc...
Perhaps I will have to have Interferon as well? Do you know of anyone that is on Jakafi and Interferon Chris?
Well Steve my Antipodean friend I'm actually quite chipper and gaining strength. Appetite healthy which always good sign.
They would recommend a higher initial dose if your platelets count was high at outset because Jakafi would reduce it in most cases. That's why I think they may reduce your dose a tad if your level continues to rise. But could well be wrong, you'll have to rely upon your Hem.
Dual treatments with Jakafi are in their infancy as far as I'm aware because I was willing to try it with Hydroxycarbamide for instance to see if the cocktail would reduce spleen size. But there was reluctance to double up. That may have changed or it could depend on how forward thinking your Hem is. I think worth a go but in your case you need to give Jakafi more time yet.
I never took any vitamins but I would think your increase will be down to the Jakafi and wait and watch is likely in short term. Professional advice here seems the way forward.
Yes, we are all in a bit of a heat-wave down under at the present.
Temperatures have been in the low 40sºC over much of the past few weeks and they say there is more to come today and this w/e. Power stations are buckling under load stress and they forecast possible power outages may follow...
Incidentally, I had my first vino (in quite a while) with my evening meal last night, and slept like a baby... What bliss... So feeling more alive today than is my usual.
Yes, it will be interesting to see what my Haem' recommends...?
Prior to commencing Jakafi at 20mg x2 per day, the Interferon had my platelets down to 537. I then had a two (2) week break from all med's and they bounced up to 693 on commencement of Jakafi etc. So it is still early days I suppose...
First back up to 791, then down a tad to 740, before back to 795 yesterday...?
I would not want to return to the HU, as I found that medication intolerable on the whole, and that was why I asked about whether you knew of many that might be on both Jakafi & Interferon etc. I seem to vaguely recall hearing that some are... but I am not quite sure where I had heard that...It might have been on Patient Power? Or I might be completely mistaken altogether...
Glad to hear that you are chirpy and back on your food again
That is excellent news my friend.
Yes, I shall keep you posted as I learn more about this condition.
Hopefully the lights down this way won't be out for too long...
Essentially, I had a large range of peculiar cell structures in my bloods of various shapes and sizes, and that led my Haematologist to suggest the BMB, might be prudent, and in my case it was.
But your Haematologist would most likely know if there were any signs that required further investigation.
You said that you would be seeing your Haem' again shortly... Just write some questions down, and quiz him on your next meeting.
If you are still concerned, you could always seek a 2nd opinion.
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