ITCHING and PV

[lucieboo]

I have had Polycythemia Vera for 11 years controlled with Hydrea 2xdaily, only my leucocyte count keeps going up and Monocytes are off the scale, just up and up this year, no-one can tell me why. I have also developed IBS. Seems probable I have developed mastocytosis ie mast cell proliferation from basophils. OK, but what do I do? To sleep I take antihistamines (H1 and H2 blocker plus Atarax, 1g Paracetamol and plenty of strong alcohol: this is not my choice, it is the only way I can sleep without scratching myself to death. After a shower (rare!) I have to walk fast for over half an hour and life becomes bearable again. I am near suicidal. Help! Any ideas, suggestions?

[Mazcd Partner MPNVoice]

hi Lucieboo, so very sorry that your itching is so very bad, we have some very useful information on our website that might help you, mpnvoice.org.uk/living-with...

and I been told recently by a MPN patient who suffers with this that Zero shower gel made by Sanex is very good and doesn't cause him to itch after a shower.

Have you spoken with your haematology nurse about this, as he/she may be able to offer some advice.

best wishes, Maz

[lucieboo in reply to Mazcd]

Thank you Maz, but I have used Sanex Zero for some time, it is just the same, I am careful to shower in a warm room and pat dry carefully, it is a short shower and just warm, but sometimes even if I get my arm wet when washing up I get the itches! The money I have spent on special creams and lotions...anti-itch, calming, hydrating, for babies , hypoallergenic...all the same! We don't have nurse support and so far my haematologist has just shrugged when I mention the itching. I used to go for sunbed treatment in winter and it helped, but it is not available now. I am truly getting desperate, this is the worst it has been, at night unless I am doped up to the eyeballs, in the morning when I dress, in the evening if I am tired. I know it is mast cells and am taking Quercetin which is supposed to stabilise them, plus Cetirize H1 blocker and Famotidine H2 blocker, but.....then I resort to Vodka! Only to sleep though. If I don't sleep I am worse. I have read that the IBS has the same cause. Would tranquillisers help?

[Mazcd Partner MPNVoice in reply to lucieboo]

Hi Lucieboo, I can't say about tranquillisers, you really need to speak to your doctor about that. Maz

[lucieboo in reply to Mazcd]

I am looking for UV B therapy, not sure if I can get it anywhere near me, I am in France. Sally (Inca) says Ruxo is much better but it is SOOO! expensive, not sure I qualify at 78!

[Murdoch01 in reply to lucieboo]

Hi Lucieboo, while trying to sort this out use ice packs, it is the only thing that helps me.

[lucieboo in reply to Murdoch01]

Actually I started today on freezing cold showers, it certainly wakes you up! I am following the Wim Hof method, recommended by another Forum patient. If it doesn't kill me.........

[Barbiebreath in reply to lucieboo]

I am also trying the Wim Hof method. It’s only been a few days though. I did have one whole 24 hours without itching. Today I did not do the breathing or the cold shower and I had same old itching. I tried the beta alanine and 😳 It made my itching 1000 X worse! This was so disappointing because I’ve read where it has worked for others.

[lucieboo in reply to Barbiebreath]

I don't know. Beta alanine worked for a bit, but I am back to Paracetamol and Calvados to sleep at night. I am upping my dose of Ruxo. to 10mg 2x daily and hope the platelets don't drop too much. It seems to be helping. I tried the freezing showers, made it worse. Take cetirizine before a shower, one day in three and short, everything warm, bearable at present.

[Hidden in reply to lucieboo]

Quercetin - I would love some more info about this. I have been fermenting red onions and that is meant to raise the quercetin levels in them hugely.

- and btw they are delicious! they are still raw (not having been cooked) - but they do not taste at all oniony and are crisp! Even husband is having them - totally delightful addition to all sorts of salads.

Has taking this helped at all - and how?

[Inca]

Hi Lucieboo,Sorry to read of your dreadful itching.We are the same with 11 yrs of P V.

My Leucocytes were out of control nearly 2 yrs ago,was hospitalised & now I

take Jakavi/ Ruxolitnib. No more itching.Maz mentioned the Sanex douche,I have used that for several yrs & yes it does help.Still use it

Are you still treated in France? La Roche Posay Lipikar Baume is helpful too for itching ,inexpensive too. It is safe ,I used it on my G S D s nose when all veterinary creams failed to cure an itchy rash on it. I hope you soon get some relief very soon,so debilitating & depressing.Very Best to you .Sally

[Chicagopv]

Light therapy also really helped me. But I was still using Atarax. Now I'm on Jakafi (ruxo...) and I'm much much better. I was getting it for $20/month when I had insurance. It's much more on Medicare.

[lucieboo]

Jakafi: my worry is the real cost to the health service. I would get it free if it was prescribed for me here in France as I have 100% cover as it is a cancer. I think younger people should get priority, the budget is not limitless. We shall see! Atarax just helps me get sleepy but a good glass of Vodka does that better! Cetirize and Famotidine are more specific H1 and H2 blockers (the ZZ magic) but my problems are too severe for those to work well.Good luck to you, hope you can continue with Jakafi.

[dishcell]

I so feel for you so much with the itching. You are very noble to think of the cost of treatment but I think you have every right whatever your age to have the optimal treatment to make life bearable.

[lucieboo]

Thank you, I suppose you are right. I will see what the bloods show up, then I talk to my new haemo in February. Impossible to get UV B treatment here, you need to see a dermatologist and getting an appt is near impossible. Then, I would probably have to travel to Toulouse weekly, not on. A pity there is not more research on the itching, I am sure they could find treatments, but these days it has to be lucrative.

[finlay2106]

Hi Lucieboo, I was diagnosed with PV only in Feb 2020 but had been having itchy skin problems from the previous year. The various treatments didn't address the itchiness (currently on 500mg/1gm Hydroxycarbamide alternate days + 75mg aspirin) and like you I've tried various soaps, skin lotions (my skin wasn't dry though), anti-itch creams, tepid showers, patting skin dry and anti-histamine/paracetamol combos to help me sleep. I would get itchy skin attacks even without it being triggered by water (for me it tended to be forearms and thighs). There is potentially useful information on this topic on the pvreporter.com website as well as mpnvoice and methods that might work seem to be a very personal and variable selection.

What I have found though is, if you can steel yourself to do it, is cold showers, based on methods proposed by Wim Hof ('The Ice Man'). I try to do this at least alternate days (tricky during winter!) and am convinced that it's this that has stopped the itchy skin problems, other than some faint itchiness immediately after for about 15 minutes. Since doing this (for about 6 months now) I've not had one itchy skin attack even though it was happening before while on the Hydroxy. I also happen to use an organic nettle-based soap from Scotland (which doesn't sting!). Hof claims in his book a scientific basis for this having a beneficial impact on the immune system and circulatory system. For good measure I'm also taking a turmeric and N-Acetyl Cysteine supplement (with medic consent - there's interesting info on the pvreporter website about these supplements) which also is said to help the immune/anti-inflammatory response but at the moment my bets are on the cold showers. Takes some getting used to as you build up to it but at least it does save on costs of heating the water...

Hope this helps and good luck if you try it.

Paul

[lucieboo in reply to finlay2106]

Oh, Paul, thank you so much. Before Covid hit I was going to the thermal baths at Ax-Les-Thermes and found this was OK although the swimming baths made me itch. At Ax they also have sauna and cold shower, and a hot tub and a cold tub (freezing cold!) so I used these also. I have tried cool but not cold, but I can do that, I am a tough cookie! Staring tomorrow! I will let you know how it goes. I have heard of Wim Hof and my son who is a sports coach and teacher is a fan. Hope you continue to thrive, best wishes. Yes, itchy skin arms and legs, sometimes the rest of my body, but limbs are the worst: I am trying to apply gentle moisturiser every day now.

[Hidden in reply to lucieboo]

What temperature were the thermal baths?

[hunter5582]

As Inca stated, ruxolitinib is known to be far more effective than HU for dealing with pruritis. Saw your note below - age/cost is NOT an issue here. This is about matching the right medication to your presentation of symptoms. Also note that HU is known to cause both constipation and diarrhea (it can compromise the intestinal endothelium). Assertive patients receive higher quality care. Passive patients do not. Please assert yourself in getting your needs addressed. You deserve tp receive optimal medical care regardless of the cost to the healthcare system.

In the meantime there are a few things that may help. Eucrisa (a PDE4 inhibitor) is a topical ointment that may help. I use it for eczema, but my dermatologist said it works for pruritis too. Note that alcohol will sedate you, but it disrupts sleep architecture. Many sleep meds do this as well. Belsomra (suvorexant) is the one sleep med that is an exception to this as it is effective and does not cause a problem with sleep architecture.

I have dealt with both itching and chronic insomnia myself. Getting sleep is absolutely essential to health and well-being. You need and deserve to get relief from your current situation. You will likely need to advocate for yourself to get the interventions you need. Please do so now before things get even worse.

Know that you are supported and as a valued member of our MPN community we are are pulling for you. Hang in there - relief is available.

[lucieboo in reply to hunter5582]

Thank you so much, Hunter. I think I am reasonably assertive but I have found that many medics hate it if they think you have been informing yourself through the internet, they feel it as a threat to their 'expertise'. I don't know what my new haemo ( a woman) will be like. I saw a gastro enterologist who said as soon as I entered 'I will ask the questions, you will answer, nothing else. Otherwise we are finished'. He did colonoscopy/fibroscopy and said everything is fine, which it certainly is not. My 'medicin traitant' (GP) seems competent but her attitude is you have had this for 11 years, what do you expect? Little sympathy there. I will look at your suggestions and see what the haemo advises in February. I will ask about Jakafi as it seems to be the solution, I don't think cost is a problem for here, but it makes me feel guilty, however on the Forum you and others are suggesting I need what is appropriate for me and maybe I need to accept that. I am still quite active for my age and generally cope well, but am a bit overwhelmed by my problems now. I developed cardiac fibrillation in 2019 and was treated with horrible Cordarone, I coughed for six months, now I have compromised thyroid function as a result. I had a catheter ablation in February 2020 and my fibrillation has ceased, then I had a very severe IBS flareup in August, better now, followed by the ghastly itching. It can seem too much sometimes.Your support and that of others in the forum means so much to me, I am very grateful.

[hunter5582]

We are stronger together. Glad to hear the support helps.

FYI - I also had a catheter ablation for paroxysmal atrial tachycardia. Very interesting surgery. I was conscious for most of it and got to watch what was happening on the monitor. Also a very successful surgery.

If I had a doc who said what that GI doc said I would respond "You are right. We are finished. You are fired. I will find a more competent doctor." I have no problem at all dismissing providers who do not provide proper care.

The IBS thing is really awful. My brother and mother both have severe cases. My own situation is that the HU compromised my intestinal endothelium and caused chronic constipation. GI tract never really returned to normal after I d/c the HU, but it is much better now than it was. Can't say it is just the HU, but suspicious that that is the case. Fortunately there are some things that really help with the IBS. For my brother/mother avoiding dairy and gluten make a huge difference.

Hope you find relief soon.

[lucieboo in reply to hunter5582]

Yes, I have found out what I am able to eat. I know it is mast cells triggering a histamine response and I have been gluten-free for 20 years, the IBS was present before that, but it just got bad in August, very bad in fact, and is now much better. It may be Hydrea, but I think not. The mast cells are guilty of provoking the itching too, high basophil level leads to this proliferation.The GI specialist, yes, I agree, but I had no choice, he was the only one who could see me withing 6 months and I was desperate, at least I now know I have not got Crohn's or colon cancer.

The catheter ablation was great, I found out this was possible on the internet, not my cardio, and then searched for the cardiologist who would do it, she was lovely! A shame I had to suffer the ill effects of Cardarone first (this was my cardio!). Would never have taken it if I realised it ruins your thyroid.

Well, we keep on keeping on......

[ainslie]

HiYou have had some good answers already, I have PV since 2007 and was an olympic itcher so will let you know what helped me. First best be careful with the vodka because it will dehydrate you and dehydration thickens blood and thick blood can cause clots etc, if you cant stop or reduce the alcohol drink lots of water to keep hydrated even during the night. You mention that you walk fast after the shower, I exercise quite fast for 30-40 minutes before the shower, I also found UVB reduced itch dramatically, I have daily low dose UVB from a machine in my house, combining that with aerobic type exercise before shower made a huge difference before I started on Ruxolitinib. As far as medication, its unlikely the HU made the itch worse, I am on Ruxolitinib and that is the best cyto reduction medication for itch and also controls counts very well. I got it on NHS in UK the through the local haem but on compassionate grounds from Novartis, if you say the itch is impossible and HU isnt working you might well get it free from Novartis, your haem can apply to them. So dont give up, as Maz said you need to have a serious discussion with your haem and if he cant help, get a second opinion from another haem, or see an MPN expert for an opinion. Serious itching is one of the worst things imaginable but I do think you can reduce it or even get rid of it but keep trying.

Kye PV Ruxolitinib 15mg BID, UVB

[lucieboo in reply to ainslie]

Hello AinslieThank you for your helpful reply. With the Vodka, it is drunk diluted but I also drink lots of water every day, plus tea and herb infusions, so I don't get dehydrated. I exercise quite well for my age, I am 78, walk several kms daily with my dog, whatever the weather. I am also trying the Wim Hof (iceman) method, cold showers daily, started yesterday. I will try this with a dog walk before and after the shower. Yes, I agree: it is not Hydrea, it is mast cells provoking a histamine response and due to my high level of leucocytes, particularly basophils. I will ask the haemo about Ruxolitinib/Jakafi, I may well need this now. I can't get UV B anywhere near home in France as there is a dire shortage of dernmatologists and nowhere is this treatment available. I used to go for sunbed treatment, very careful about level, not tanning, just a single course January-Frebruary, but the use of sunbeds has been dicontinued. So perhaps Ruxo is my last hope.

I am grateful to you and others on the forum who have provided sympathy, support and suggestions. I will conquer this!

All the very best, Cecilia

[Hidden]

Sorry to hear about the itching. I got it bad for a while. I had been listening/researching all sort of things and twice I heard about how a BATH of 40 degrees C helped with all sorts of things. I gave that a go (it took a bit of getting used to) and for sure that helped.

Having showers seemed to be the worst thing for me - the itching went made (no matter what the temperature).I have not had itching for months now - and what a relief that is.

I have also introduced since then other things

- I found I was short on chromium so have been having that as a supplement - and that has got rid of the 'fog'

- I have at least 1 cup of bone broth a day. Initially I took 4 c a day just to see what happened, and found the erythromelalgia in my feet almost completely went with that! what a surprise

- I have introduced (more than just the yoghurt and cheese I was having) fermented food/drink. That is also seeming to help a heap

- I had been low carb high fat diet (Keto) for some time.

All of the above has helped generally - but certainly fully immersing myself in the bath and getting my whole body temp up has worked a treat.

[lucieboo in reply to Hidden]

I'm so pleased it is working for you. Before Covid I found the thermal baths at Ax-Les-Thermes wonderful, but that will have to wait. I am going on to Jakafi Monday week and that should stop the itching and reduce my enlarging spleen, fingers crossed x.Very best of luck to you, take care.

[Hidden in reply to lucieboo]

I have just had a shower - and the itching is attempting to come back. A deep hot bath again for me tonight and another couple - that will sort it for a while. It has been months without any itching - so a bit surprised there.

[lucieboo]

It seems a very good idea. We only have showers in our house but I have been thinking for some time about replacing one with a small bath with a shower above: I have seen some we can fit in and it will have steps! It will be in our en-suite. I will get an estimate. Good to have the encouragement: I always liked a warm bath and a glass of wine, lovely after a walk in the wet mountains of Wales. All the very best to you.

[Hidden in reply to lucieboo]

It is NOT warm - 40C is hot! - but so worth it.

I keep a thermometer to the side of the bath - as I need to keep topping up with pure hot to keep it up there.

I look forward to hearing how you go.

[lucieboo in reply to Hidden]

No worries! I am progressing slowly to myelofibrosis and my super new haemo has put me on Jakavi. I itch no more! I can take showers and will soon be able to swim again.

[Loubprv Volunteer in reply to lucieboo]

hi

Very belated response 3 years down the line!!

I was diagnosed in 2009 with PV and had the most unbearable aquagenic pruritis ( it’s real name)

I simply stopped showering bathing and swimming. Installed a bidet.

A million % improved. Louise x

[Bruschett]

I have Pv with pruritus. H1 and H2 antagonists really didn't work well. Atarax and paxil helped a little with the itching. I am currently receiving narrow band uvb phototherapy 3 times a week to start. Noticed slight improvement since starting 3 weeks ago.. We'll see, next is medical marijuana if uvb doesn't work. Good luck. Ed

[Dane12 in reply to Bruschett]

Hi Bruschett,If phototherapy doesn't work, you may use beta-alanine 1 g taken 30 min before shower. This helped me when all possible H1 and H2 antagonistic combinations failed to help me. Please be aware that going more than 1.5g might induce pruritus by itself, however a different flavor, more supportable.

Also, in the beginning, you may feel a strange feeling on your face, but not unpleasant.

Hopefully it will work for you.

[Bruschett]

Contradistory, but a very hot bath (App 106 degrees) settles down the mast cells for about a day. Found on Utube, Dr Berg discusses PV itching. Works for me when having a bad day with itching. Also getting narrow band UVB photo therapy 2/3 times weekly, helped alot.