stinging under the skin with PV

[Airslie]

for some reason I am suffering with horrible stinging.. not itching with PV. Lately it’s been practically all day long and it’s unbearable. I do take anti histamines but lately they aren’t helping. I also take hot bats which give temporary relief. Wondering if the Peg Interferon is making it worse suddenly even though I’ve been on it for about a year with just some sporadic stinging. I tried Beta Alanine tonight but it tingles and stings for an hour or so and feels fairly uncomfortable. Does anyone have any new tips?🙏🏻

[Dane12]

Hi,

You may adjust the dose of the Beta Alanine. How much did you take? Typically, it should not be more than 1 g; as the dose is higher, you get the tingling specific to the Beța Alanine.

[Airslie in reply to Dane12]

I read on several posts to use 1/2 teaspoon. It was very uncomfortable. 😵‍💫

[Dane12 in reply to Airslie]

There are teaspoones of different sizes. I would recommend to weight it. In my experience, the tingling started once I took doses with more 1.5 g. If I take 1 g , it stops the itching without having the the uncomfortable tingling. However, we all are different.

[Airslie in reply to Dane12]

Thanks so much, Dane!

[hunter5582]

Pain is the body's warning that something is wrong. This is not something to ignore nor tolerate. Suggest you get a more thorough review of this symptom by an integrated care team. While it is possible this is a form of pruritis, I wonder if this is the result of paresthesia or other neurologic issue that can be associated with PV. Your MPN care team should be able to help you sort this out. A referral to a neurologist may be in bneeded.

The good news is that there are interventions that can help. That requires a proper assessment and treatment plan.

Please do let us know what you learn and how you get on.

[Airslie in reply to hunter5582]

Thank you, Hunter! I have an appointment to see my MPN specialist on Tuesday. Due to some other things going on I think my immune system is in big trouble. I need to build it up.

[hunter5582 in reply to Airslie]

If you are significantly immune compromised, then there are different interventions that can be used; however, like usual, these interventions come with their own risks. Significant immune issues definitely need to be addressed.

There can also be more subtle immune system issues as a result of medications like Pegasys or Besremi. I am experiencing mild lymphopenia and borderline neutropenia. It is not significant enough to change my dose but is a concern that we monitor. I consulted with my Integrative Medicine doctor who recommended immune boosting options like Astragalus, Reishi, Cordyceps. I opted for a blend of Astragalus/Reishi. I cannot prove that it does any good, but I have had no problems with bacterial or viral infections.

Note that I do not advocate using complementary health interventions like supplements without consultation with a knowledgeable medical provider. I also be sure to let my care team know when I am using any supplement. Here are a couple of resources if you are interested.

fonconsulting.com/resources...

ifm.org/find-a-practitioner/

[Airslie in reply to hunter5582]

Thank you so much, Hunter!

[Miriammusic]

I had the exact same thing. It was terrible. I used to wonder why everyone spoke about the itching and never the stinging. Mine never itched but felt like needles or pin pricks. It was absolutely awful. It was almost always triggered by temperature change/water or friction, like using a wash cloth. Usually after my morning shower. One thing that helped was to immediately mitigate the change in temperature by getting into a warm robe. Or going out on the balcony, (I live in Miami). Other times I would get under the covers and use a heating pad or even use a blow dryer on my legs. Took around 25 minutes or so for it to subside. It happens only very rarely now and I believe that’s because I am on Besremi and my counts are under control. Even now though, I can’t use lotion on my legs or like those hot towels they use on you after a pedicure. I would try the heat/temp regulation and definitely, as Hunter suggested, of course speak to your doctor.

[Airslie in reply to Miriammusic]

Thanks for the tips! Maybe I need to switch to Besremi. I’m seeing my dr on Tuesday so will address all of this.

[KLCTJC]

There is a neuropathic itch cream called dermaleve. It can be kind of pricey but it is very helpful for neuropathic skin disturbances. You can order it online. It might help.

[Airslie in reply to KLCTJC]

Thank you!

[Cityreach]

Try dermacol I cant say it stops it happening but it does bring relief its a cooling menthol lotion it does distract from the itching/stinging feeling, CNS said to try it not cheap but did get CNS to ask GP to prescribe which they did hope you find relief as I too am a sufferer and its not pleasant