I was given this chart at last appointment.
My platelets have remained almost the same from last month .590 now 605 ….We agreed to keep to every other day on Hydroxy. Next appointment in 3 months.
Have people found when this happens they start going up ? I’m happy at the moment to stay around 600 rather than up meds.
Thanks in advance
The plot shows a steady down trend, is there a point missing? From the plot, it looks like steady progress, but it will take more results to know whether it has stopped declining. It is normal to go down slower as it gets lower. I assume you started the HU at the highest point, is that right?
By coincidence my PLT rise also started around 2013.
I saw your prior comment "light head sensation or clamped like feeling" that got better with HU. Is that still gone? I can say the same, got better but not always. That symptom is impossible to describe to anyone who has not had it.
Not sure we’re to look for point missing. Where do you think? I’m not good with charts..Yes started at highest point . And yes has got much better . Light headness completely gone . Clamp still a bit there …
I do agree , so hard to describe when asked.
You noted in the top post an increasing trend on the PLT. But in the plot you showed, the trend is clearly down. This gets into statistics etc that I'm not good at either, but my basic engineering training has that plot showing your PLT going down, with nothing showing upward. I've learned some on this with all the Covid data. But you should get some more CBCs to confirm the trend.
I see your comment with Hunter on reducing symptoms; I would do almost anything of reasonable risk to cut these lower. One definition of good symptom level is whether one can travel freely without worry of a set of debilitating flattening bad days during the trip.
I will probably never see my husband's overseas family again unless something gets a lot better.
That's a good way of evaluating. I'm lucky .
Yes I can travel without symptoms getting worse. In fact I'm so much better than when my children were little . I used to need a nap at back of car after shopping . That was before I was diagnosed with underactive thyroid .
All my other blood counts are fine.
So hard for you not to be able to travel . Where does your husbands family live ?
My bad days can be anytime, if I could schedule them better I'd have room for a longer trip...
Young kids are a "condition" in their own right, a lot of loving and hard work.
Family is in Thailand. We used to go regularly, but it's a long way with so many unknowns.
If the trend line over time is clearly up then it would be an indication for a need to review the treatment plan. Variance from 590 to 605 is not significant and well within the normal variance we all experience. Providing you remain symptom-free, hovering round 600 is a very reasonable plan and at the target some MPN Specialists now use for ET.
Would you be aiming for completely symptom free? I’m so happy to be ‘nearly’ and so reluctant to up meds. BUT if it would be better at this point to I suppose I should ‘bite the bullet’
Only I can decide, I know that , but thoughts as ever, appreciated
I think it depends on what the symptoms are. Some are more tolerable than others. We always have to weigh the intrinsic risk of a higher dose when making the decision. It really does depend on your treatment goals and risk tolerance.
All the best.
At the moment my goal is to try and keep all blood tests reasonable ,and not to have symptoms that are really bothering me . So far so good .
My thoughts.
You’ve had an excellent response to hydrea (like myself). Your counts have reduced by half; you must be delighted with this result.
However, its likely without a further increase in your meds the platelets will now bounce around the numbers you’ve mentioned, as you’re on a very low dose.
You have to do what you feel comfortable with. How are your other blood counts holding up? If ok, you still have room to titrate meds without detriment, you can always decrease again if you feel uncomfortable. You may just eliminate any remaining symptoms. X
Your thoughts are most welcome. Realisticly I know probably will need to up meds.
And find it helpful to talk to others who understand.
I'm so reluctant to take more..but maybe better to now rather than wait. ...........
Hope you are doing OK
Yes, I’m doing fine thanks.
I know you remain cautious with regards to an increase in your meds, and that’s totally understandable.
Your next blood test should give you a better indicator of where you stand ‘numbers wise’.
As I’ve said before, you’re on a really low dose of hydrea already. If you were to increase it by just one more tablet, you’d still be on a low dose.
I’m reading between the lines here, so correct me if I’m wrong. I feel that you’re comfortable with your platelets at the current 590/600, but you mention being ‘nearly’ symptom free. I guess that’s why you’re considering upping your dose of hydrea, to see if you benefit. If that’s the case, the way I see it is, you’ll never know unless you try. If it doesn’t help with any remaining symptoms within a reasonable timeframe , you can always reduce again.
That’s what one dr. Suggested . Just taking one more tablet..I mentioned nearly symptom free as I wanted to be honest .
Would rather have slight clamped head than ta ke more meds at the moment …
I like the idea of waiting for next blood test , then if no change will definitely add 1 tablet
Starting on pegasys, advice welcome!
No face to face haematology hospital appointments for at least 4 months
increase dose peg and increased spacing
New haem, new diagnosis?
