Hi all
Recently diagnosed PV Jak2 positive. Had venesection but symptoms are worse.
I have tingling and aching in arms fingers and feet toes. Also extreme itching after I eat anything. Tried changing diet but sill get hives after any meal no matter how small. Slightly less without meat, dairy or carbs like rice or potatoes.
Anyone else had something similar? Dr has no idea why or how to help other than antihistamine (but they make me very sleepy so only at night).
Sean
My itching only occured when my skin became wet either internally from sweat glands or externally from water.
Sorry to hear this, itching can be as debilitating as pain. Have you tired different kinds of antihistamine - I find that Benadryl doesn't make me drowsy for example.
Hi there.
No only the one prescribed at the moment but will try Benadryl.
Many thanks for the suggestion 😀
When I had one prescribed it was the equivalent of Piriton, the cheap drowsy one. I found it worth paying for a better one. Good luck!
SeanMc, vitamin C is an antihistamine and in liposomal form becomes more bioactive . Quercetin is another to investigate in liposomal form as it overcomes low absorption. Have you been checked for celiac ?
Hi there.
No not been celiac tested but was suggested by the consultant.
I have to contact my GP to look into this.
Thank you for your suggestions. I will try them all.
Sean
While your waiting to be tested for celiac, try eliminating gluten in your diet. That is a challenge because gluten is used in so many food products or may have been processed in a plant also processing gluten foods. My cousin has to call product manufacturers if off label ingredients contain gluten. He does carry a special enzyme for digesting gluten if he is away and not certain about the food even though he is assured it does not contain gluten....even a speck but he doesn't use it otherwise. This link will provide testing information you can discuss with your doctor.
celiac.org/about-celiac-dis...
In order to be tested for coeliac’s you need to have gluten in your diet for atleast 2 weeks prior to the test, so may be worth asking to get tested. Have you been referred to an immunologist to consider allergies, they will be able to run a number of specific test to eliminate/ identify any possible causes.
I suffered for years as a teen to the same type of reactions we couldn’t work it out, it turns out I’m really allergic to ivy (it was on a gate where we lived, so every time I opened the gate it would trigger the hives and extreme itching) it was the exacerbated by certain foods those high in histamines. I have a naturally high histamine level so it doesn’t take much to tip it over the edge. I’ve gone through cycles in my life of not being able to tolerate certain food groups for short periods of time, I eliminate them for a bit then reintroduce them.
As for antihistamines there are so many differant types and you can take more than one a day, I find cetirizine works well for be in tablet form, I take one a day as a routine when I have a reaction I have been known to go to the max dosage and take 8. Sadly my son is the same he’s been on adult dosing since he was 6 months old, he has far more severe food allergies and he too also has a crazy high natural histamine level.
There’s no need to suffer with it, ask for a referral to immunology for further testing, in the meantime try different antihistamines eg. loratadine, chlorephrenamine and cetirizine and speak to your dr about increasing your dosage and spreading it out throughout the day to get in under control.
I hope your feeling some comfort soon xx
Sorry to hear about the PV symptoms. The itching and tingle/ache in extremities are all too common and very bothersome. The good new is that there are interventions you can try. This need to be done in consultation with a MPN Specialist, not a regular hematologist. The docs who specialize in MPNs are much more aware of these PV symptoms and how to treat them.
Some of the things that have worked for me include aspirin for the microvascular symptoms in extremities. We are each different in how we respond to aspirin and what the correct dose is to obtain symptom relief without adverse effect, The correct dose for me is 40.gmg/day. Others need 81mg 2x/day. Others cannot tolerate aspirin and need a different kind of medication to treat the microvascular symptoms.
The histamine response that causes the itch can also respond to different types of medications. I have had the most success with Claritin for histamine related issues. It is effective without causing drowsiness or other adverse effects. For more localized itching, Eucrisa is a highly effective ointment for relieving symptoms. To go more to the root cause, Ruxolitinib is recognized as the most effective cytoreductive agent that resolves the itching (pruritis) that results from dysregulation of the JAK-STAT pathway.
The other thing I have tried that helps is to deal with systemic inflammation. At the core, MPNs are inflammatory disorders. Dysregulation of the the JAK-STAT pathway causes the overproduction of inflammatory cytokines. This is thought to be responsible for many of the symptoms we experience. I have used several agents to help with this. The most effective agent has been Curcumin. It has helped more than anything else. N-acetylcysteine is supported in the research by Dr. Angela Fleischman and others. I use L-Glutathione (a related agent). I also use a fish oil derivative called SPM Active. Please note that I use all of these agents under consultation with an Integrative Medicine doc. Any agent that can help you can also hurt you and interact with things. Most docs are not familiar with complementary health interventions and cannot give accurate advice. It is important to consult with a doc with the KSAs to advise on this is you are interested.
If you are not already seeing a MPN Specialist, that is a critical first step to take. Here are two lists just in case you have note seen them.
mpnforum.com/list-hem./ (World-wide)
mpnforum.com/list-hem./ (USA only)
I hope you find relief soon
Hi
Wow u have given me a lot of good information and I will have to disect all this one bit at a time.
I am on Asprin 150mg at the moment with a powerful antihistamine Fexofenadine (which works well but puts me to sleep).
I have been referred to St Thomas' Hospital in London where professor Claire Harrison chairs the leading MPN research for the NHS in the UK. It may be a while before I get my appointment though.
Until then will definitely look at all the information you have provided and see what I can try.
Many thanks
Sean
Hi Sean, my itching only comes after baths/showers, and occasionally just out of the blue for some reason. Hope you get it sorted soon 💞
Hi Sean,
Fully sympathise with this as itching and PV can be awful. To describe it as itching almost plays it down as it can be a nightmare. I totally support Hunter's comments and would like to add some other pieces of info in case it helps. I have PV and take aspirin 75mg daily with 500mg/1gm hydroxycarbamide alternate days.
1. Have you considered keeping a food diary to see if any particular thing makes it worse? I've discovered that salty crisps or similar can kick off the itching. As has been said everyone seems to be different and there has to be quite a bit of trial and error. Also be aware that some other seemingly innocuous products (such as Gaviscon in my case) may generate itchy skin.
2. Have a look at pvreporter.com as there's a fair bit of info on ways of trying to deal with the 'itchies'. The suggestion in there is to avoid alcohol, sugar, caffeine, chocolate and several other key ingredients which doesn't leave much to enjoy!
3. As well as Angela Fleischman that Hunter mentions, Carolyn Katzin and Robyn Scherber are also into diet and MPNs (the US seems further ahead with this than the UK). There was a very interesting presentation on diet by Carolyn Katzin in the pvreporter website so hopefully it's still there but let me know if you can't find it as I have a copy.
4. Like Hunter I take turmeric and N-AC (I can't get hold of Glutathione) supplements and I think there's an article (or link) on N-AC in the pvreporter website. However, you should not take any supplements without discussing first with your Haematology team or MPN specialist.
5. Before I started taking turmeric and N-AC I was getting itchy skin attacks every evening and resorted to an antihistamine/paractamol combo (I was using Boots own brand Cetirizine) but didn't want to take this permanently. I do have a cold shower every other day (I don't moisturise the skin after as I see no point) and although I tingle for about half an hour afterwards that, along with the turmeric/N-AC, seems to stop the itchies from happening. I didn't do a proper trial with just trying one at a time but feel convinced that it's at least one of them that helps because the itchy skin attacks stopped. I think the whole cell inflammation aspect is a significant area and may become more prominent in the future.
This does appear to be a very personal issue and annoyingly what works for one person is no good for someone else. If not already done so, consider tapping into the other support groups such as MPN Voice and attend any webinars organised in the UK by MPN Voice or in the US by MPN Advocacy.
Good luck
Paul
Hi Paul
Many thanks for all your info and help.
Regarding your points:
1 yes have been keeping a food diary but it has been frustrating. Eventide I think I have found something to eat that has little or no effect, it starts after a short time. Can't not eat so pick things with the least effect. Lots of fruit.
2 great site. Thanks for sharing. Already cut out alcohol chocolate coffee dairy meat and most carbohydrates like potatoes. I will see if there is anything else that I can eat.
3 I will let you know if I can't find the video u mentioned.
4 I have ordered the turmeric supplement and will let you and Hunter know if it helps. Will also discuss the N-AC with my Haematologist when I see him next.
5 I hope it works for me.
Many thanks again
Sean
Strangely, pretreatment, ginger had that itchy effect on me. I put it down to my capillaries being full of sticky, thick blood. No problem now
Anyone else turned down Hydroxycarbamide?
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Does anyone else feel like this? 
Does anyone else experience visual (ocular) migraines?
Tired after eating?
