Ruxolitinib Blood spot/purpura

[Hocus58]

Hi, I was diagnosed with PV Feb 22. Commenced HU Nov 22 had gastric issues, bone pain etc and was decided to change meds after 15 months on the HU.

Changed to ruxolitinib Jan this year and had no issues to date, bone pain mostly gone, no itching, no weight gain, gastric issues much better and feel well for the most part. My bloods came down pretty fast and my HCT is now .34 and Hb 115 which I think is quite low. This morning I noticed a blood spot on my arm about 5mm and wondered if this was to do with the low counts above.

My platelets at last visit were 281, WBC 5.7 RBC 3.9 and neutrophils 3.4.

I am due to visit specialist next Monday so will ask him then but just wondered if anyone had any experienced this.

[EPguy]

I've had similar and other minor derm artifacts since on Rux. What is your dose?

I think there is some overlap with excess blood thinning for me. My MPN Dr is ok with it. I get checked regularly by the dermatologist.

Your red counts are low as you say, a dose reduction seems a priority topic at your next visit.

[Hocus58 in reply to EPguy]

Hi I’m on 2 x 10mg a day. That was my thoughts to reduce to even 15mg a day to see if that brings red counts up a bit and try to get to optimum dose to stabilise.

[Ebot]

Yes, that happened to me shortly after starting Rux (after Hydroxy). But mine were lots of bright red small / pinprick spots mostly over my chest and upper arms. (Could be elsewhere but can’t see that far!) They seemed to happen over night. I happen to notice another larger one yesterday. Haem didn’t seem at all concerned when I mentioned it. My numbers were all fine at last visit. Except platelets which continue to rise. Do report back.

[Hocus58 in reply to Ebot]

Hi well I went to see the specialist and by the time I got there it had completely faded and was barely visible. So from Wednesday when it first appeared to the Monday it faded very quickly. I did have the photo so I showed him that and he said it looked like a bruise but didn’t dismiss the fact that it could be caused by the aspirin. I was really surprised how quickly it went away to be honest. It’s very disconcerting when these things spring up overnight 😔 but he was not concerned.

[Ebot in reply to Hocus58]

Glad it seems to have resolved itself. And no cause for alarm!

[ainslie]

it may be connected to Rux but maybe not, I don’t think your current counts are likely to be the cause, your reds are a bit low so should probably reduce the dose a bit, if your Haem agrees you could try 10+7.5 or 7.5+7.5, that means halving a 5 mg tab , I have been splitting Rux pills for 7 years to get count exactly right and it works , experts have condoned it but some docs and most pharmacists don’t like it.

If I see anything unusual on my skin I get a dermatologist to check it right away, 7 years on Rux and previously 10 years on UVB and skin is excellent, I also get routine checks every 6 months.

I am no expert but I doubt your skin thing is anything concerning but a dermatologist is the best plan, if it needs sorting it’s always best to get it checked right away. I asked my derm about skin cancers and he said the trick is to catch any sun damage etc asap and that way it can be stopt BEFORE it can be an issue.

And as is the case with me often, any skin spots clear up before my dermatologist appointment anyway, still have to pay him though 🙂

[ETMF]

I have been on Jakafi for 10 months. This is what my skin is doing in different places mostly arms. Low RB low HB low Hem, high platelets. Myleiofibrosis diagnosis.

Skin reaction to med and disease

[Inca in reply to ETMF]

Yes recognise that! Bruising as well !,Try aloe vera oil & Argan oil both help skin probswe M PNerssuffer.

[ETMF in reply to Inca]

Yes on aloe I grow it as it loves the desert. Bruising some times looks like I have been in a severe accident or a street brawl. Thank you for the heads up on Argan oil.

[Inca in reply to ETMF]

Me too I have to coverup now ,I loved my glam clothes ,thing of the past now,sometimes I wonder where the purple & black bruises come from,often tho just a tail wagging dog has me like road kill!Best to you.

[Bellakeira]

You poor love that looks very angry. Hope you can get it sorted soon