Daisy-May

[Daisy-May]

Hi need some advice about little red dots on my legs I've read it could be petechae I'm really worried about it does anyone else suffer from have this

[Otterfield]

Yes, I have petechiae caused by low platelets. Mine are around 30 at the moment (chemo in hospital) but in the past I have had petechiae with platelets of around 100, so it's clearly not necessarily a sign of dangerously low numbers.

Nevertheless, it may be a good idea to phone your nurse to put your mind at rest.

[Daisy-May in reply to Otterfield]

Thank you so much for your reply much appreciated my platelets were 122 three weeks ago I had a venesection as HCT was 47 don't know if that could have dropped my platelet count.. Phoned the nurse for advice but being New Year's day probably not get a call back....

[Daisy-May in reply to Otterfield]

Thank you for your reply I had a blood test yesterday all my counts are down platelets 50 the nurse said its worrying seeing consultant today BMB tomorrow so scared not slept all night..

[Otterfield in reply to Daisy-May]

It's all so scary isn't? However, my transplant nurse told me that platelets around 50 are not a problem and blood would still clot efficiently at that level. I hope your consultant appointment went well and that they sort you out quickly.

Best wishes, Jennie

[Daisy-May in reply to Otterfield]

Thank you for your reply Jennie the consultant is 99%sure its leukemia BMB tomorrow I've got several options one is 6 weeks of intense Chemo in hospital plus other options can't decide.. its scary road to go down Best wishes Sue..

[Otterfield in reply to Daisy-May]

I'm so sorry to hear this. Is it AML he suspects? My treatment started a week ago and my medical team has been very encouraging. Obviously there are no guarantees but I hope for remission for as long as possible.

We can both hope and pray for successful treatment.

Very best wishes, Jennie

[hunter5582]

You are correct that petechiae can be associated with MPNs as well as with aspirin. Petechiae are minor hemorrhagic events caused by ruptured capillaries. Suggest that you consult with your MPN care team about this symptom for a proper assessment. It is likely not a big deal but it is always a good idea to let your care team know about any new symptom.

I experienced a petechial-like rash while on a cruise in the Mediterranean. It was not a major concern since I knew it was likely a Besremi side effect. Note this is something different than petechiae. I took a picture of the rash and sent it to my MPN Specialist in the patient portal. The doc confirmed what I thought and I just went on about my vacationing.

Hope you get this sorted ASAP.

[Daisy-May in reply to hunter5582]

Thank you for your reply Hunter I've phoned the nurse hoping for a call back but being New Years day might be tomorrow now.. Just wondering if I'm getting a side effect from Hydroxy...Hope to get it sorted soon

[hunter5582 in reply to Daisy-May]

It is worth asking whether this could be a HU associated rash. If this is petechiae, I would be a bit more suspicious of it being related to the aspirin since it is a known ASA adverse effect . Suggest taking a picture to document what you experienced. It may well be gone in a few days. I always document these things even when I know it is something minor. That way I can establish a baseline and consult with my care team.

[Daisy-May in reply to hunter5582]

Thank you for your reply Hunter I will be taking pictures to send I will ask if its associated with HU or aspirin I'm just hoping its something minor..

[katiewalsh]

Hi. I developed a few of these on my legs as I gre older, long before I was diagnosed with MF and I’d seen them on a friend who doesn’t have any problems with platelet counts. They’ve always been known as age spots. Katie

[KLCTJC]

All of the above can be true. Including Schamberg’s. This usually causes petechiae on anterior shins. I see it all the time and usually isn’t a concern. All of the above could be the cause, best to consult your doctor. But hopefully whatever the cause it isn’t a big deal. Happy New Year!

[LT55]

Sounds like you have reached out to your care team, which is the best idea.

My husband (he does not have an MPN) had dangerously low platelets about 15 years ago, which put him at a significant risk for hemorrhaging. He was in the hospital for several days and was diagnosed with acute immune thrombocytopenia (ITP)*. Saying this not to alarm you - i.e., you have an MPN, not likely (probably impossible!) that you have ITP. But with very low platelets there can be a risk of bleeding/hemorrhaging. I would be on the watch for other symptoms (blood in urine, mouth sores, bruising). If you have these, you could be at an elevated risk. Best of luck.

* Yes ironic that husband had ITP (low platelets) and I was later diagnosed with ET (high platelets). We have the platelet spectrum covered!

[Bodensee in reply to LT55]

Hello Daisy-May

This is my first post on the forum, so I hope I get it right...

As far as I can see, you don't mention what your condition is, but that you're taking HU. Your experience sounds rather like mine:

I had been on varying doses of HU plus Aspirin to treat HU JAK2 for about 6 years when I developed a rash similar to yours. It started around my ankles and gradually worked its way up to mid-calf. My dermatologist said this sometimes occurs with patients on HU and my haematologist (unfortunately not an MPN specialist!) put it down to a 'microvascular complication'. Because of the very high dose of HU I was taking, I asked to switch to Anagrelide + Aspirin, and the rash slowly disappeared during the next few months. Anagrelide actually worked very well and got the platelets from around 450 down to 254. However unfortunately there were too many unpleasant side-effects, so after a year I was back on HU and, guess what, the 'rash' was back within a couple of months! This seems to me that HU is the culprit. (Currently I'm standing at a crossroads: Should I continue treatment with Ruxolitinib or with Besremi? Not because of the 'rash' but because I feel I've been on high doses of HU for too long... With JAK2 my inclination is towards RUX).

I hope these details of my experience will be of some help to you.

Happy New Year!