Hydroxy and raised bumpy red rash, itching. Anyone experience this? Anything help? Anyone seeing an integrative Oncologist?

[EANgardengirl]

I started in HU again ( last time my numbers did not drop significantly and some of the side effects were increasing so I took a break)

After a few doses, I got a few red bumps ( looked like a bug bite). Thought nothing of it, but now it’s spreading to different areas on arms, legs - very itchy.

I will reach out to my Hematologist, but thought I’d ask if this was more common to our group taking HU?

This disease has a variety of symptoms. Current my HEM team is trying to figure out why I have increased lightheartedness, dizzy spells and hot flashing. ( I think the day and night sweats are the worst- it’s exhausting on top of the fatigue ) Been to cardiologist, and so the journey of “ what’s this symptom” continues.

I’m staying very active ( no matter how much I want to nap ) and I’m now seeking support from an integrative oncologist.

has anyone seen one and found it helpful?

Thank you for your insights. With this group I don’t feel alone in the journey.

[hunter5582]

Hydroxyurea can cause rashes. If you have no prior history, it would be reasonable to think this could be a HU adverse effect. If you are having a skin reaction, do be sure to be alert for any ulcers should they develop.

Lightheadedness, dizziness, and hot flashes/sweats can all occur either from the MPN or from the HU. It can be hard to sort out which is which. Sometimes the only clue is when the symptoms began.

Hopefully, you already have a MPN Specialist on your care team. MPNs are rare disorders and many docs, including some hematologists, have little experience with them. Adding an Integrative Oncologist to your care team is an excellent idea. My Integrative Medicine doc has been very valuable in finding solutions to the issues that PV and its treatment can cause that other docs are not aware of.

Wishing you all the best. Please do let us know how you get on.

[EANgardengirl in reply to hunter5582]

Thank you Hunter. Always good thoughts and wisdoms that you share with this group.

I do have an MPN specialist ( Stanford Cancer Institute) which is in another state where I live, so I see him 2 x a year My local HEM is not a specialist, but is reasonably knowledgeable and open to targeted treatments and trials

Rash began a few days after starting HU

I have alerted my team Unfortunate as I seem to not tolerate one of the standards of care meds

This is my 2nd round trying HU

[Mostew]

I had an awful rash on back a few years ago . Think before taking hydroxicarbamide . But when diagnosed with MPN.TOOK a while to clear but I seem to remember a turmeric paste worked .

Also neem detox . Recommend by my Ayurvedic practitioner.

I also get lightheaded still . Worse in supermarkets .

What's your di.et like . . ?

[EANgardengirl in reply to Mostew]

I am 90% plant based and lean meat or fish.

No processed sugars ( I got vigilant in January of this year). As many low inflammatory foods as possible.

I believe this disease causes high inflammation no matter what I do.

But- I keep doing my best to support.

I also walk, hike, or bike every day.

It helps my fatigue.

[Mostew in reply to EANgardengirl]

Yes I agree . But I've found I can limit inflammation by varies ways.Certainly your skin rash isn't cause by your excellent diet !!

Never found out what caused mine. It's never returned .. I take low dose hydroxicarbamide....

Do hope you get rid of it...

[Solyesh]

Unfortunately yes - one of the indications of my "intolerance" to HU was severe rash on my arms..itched so badly that could not sleep - antihistamines were not much relief - cleared up once I stopped taking HU

[EANgardengirl in reply to Solyesh]

That’s what I’m guessing mine is. Thank you.

[william-Indo]

Red bumps is side effect of HU as cytokinesisYou may use Diprogenta cream or betamethasone cream.

If it wont help and affect your quality of life, talk to your doc to change your treatment.

Itching could be manage with zyrtex or beta alanine.

Hope it may help.

Cheers

[EANgardengirl in reply to william-Indo]

Thank you for medication suggestions for reducing itching. Appreciate this very much.

[Fieldsy57]

I definitely occasionally get these symptoms. It occurs particularly in areas prone to sweat. If I carry my grandson on my shoulders I very soon get the symptoms around my neck and shoulders. Easy to say `well don't do it then`, but I'm just highlighting the fact that it is enhanced by heat so if you have PV and live in a warm climate you may get the symptoms more regularly. Looser, lighter clothing also helps but it certainly can be a nuisance, particularly at night when it is hard enough to get to sleep anyway. Good luck with finding a solution with your doctor.