all of a sudden platelets count is dropping

[jillydabrat]

this is my leg the first time my platelet level dropped. I sent this picture to my GP who called me within 10 minutes to come in to see him. A blood test showed my platelet level was on the lower level of normal. My haematology nurse phoned and told me to drop a Hydroxy tablet on a Wednesday and was told to go for a repeat blood test in 4 weeks. My platelet level had dropped again to 121 so I have to drop another Hydroxy tablet on a Saturday also and, again, another test in 4 weeks. I was diagnosed with PV JAK2+ eight years ago and was immediately put on 1000 mg of Hydroxy every day which has worked amazingly well for all this time. Now, all of a sudden, my platelets are dropping and I just cannot get rid of my bruises. I am on Warfarin after having 3 DVT’s but never have I had this amount of bruising for no apparent reason. Should I be concerned that things are progressing? I know I must have had PV well before my diagnosis date. I suffered 3 miscarriages, one set of twins after IVF as well and the other symptoms were there for many years before. So, should I be concerned?

[hunter5582]

It is hard to say exactly what is going on; however, a change in status like this needs investigation. There is a reason why your response to HU has changed. Reducing the dose makes sense given that you are now presenting with thrombocytopenia. In that context, the hemorrhagic event in the picture is not surprising. particularly since you are taking an anticoagulant.

Given that the bruises are not clearing, suggest it is time to see the hematologist. I wonder whether only dropping one HU tab per week is going to deal with this issue. I would also note that knowing why this is happening is essential to devising a revised treatment plan. While progression of the PV is possible, I would not jump to the conclusion that that is what is going on. The time to get an explanation is sooner, not later. Suggest pushing for an appointment ASAP.

Wishing you success moving forward.

[Otterfield]

At 121, your platelets are not excessively low. My CNS has told me that as long as they are above 50, there is no real concern about bleeds. For reference, mine were in the 30s or 40s for a long time before my transplant and now they hover just below 80. I don't get excessive bruising.

You do need to get these persistent bruises checked though, if they are a new symptom. Good luck.

[Tortina]

Sounds like you need an appointment with an MPN specialist to get checked asap .

It’s always good to catch things as early as possible .

[Bluetop]

I can't add any comment, but I hope you find out whats going on. Good luck.

[katiewalsh]

Hi. I don’t have any answers but wanted to send you some support & positive energy. Katie