About 2 months ago, I went swimming and after showering I had severe burning, stinging, biting sensations all over my body which lasted for about half an hour. Since then I have a similar reaction whenever I shower or take a bath. I also have random stinging sensations throughout my body during the day. My MPN specialist wants me to see a neurologist, which I will be doing next week, because I am describing my sensation as stinging rather than itching. I was diagnosed with ET about 3 years ago and take Peg 45 MCG every other week. My last blood test showed my platelets at 415 and everything else normal. I was feeling very good until this stinging started. It seems strange that it would be caused by the MPN since my counts are so normal and it came out of the blue after over a year on Pegasys.
Has anyone else experienced anything like this? If so, was it considered an MPN symptom? And, how was it treated? I would appreciate your response.
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havashan
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I do sympathize with you, as I've suffered with this burning, itching for the last 15 years. When I first complained to my doctor they referred me to dermatology, this was way before I got diagnosed with pv about 3 years ago. Im on hydroxy and aspirin which manages my condition very well. The itching though has never gone, just not as severe as in the beginning.
Yep... similar to what happened to me .10 years now after PV. Itchiness got worse until I could no longer shower. Recently went on hydrea which is helping a bit...I now take quick 1 minute showers and suffer much less afterwards.It can be hell , I know. Up to you how much medication you try. Lots of advise on this site on coping.
Consultation with a neurologist seems like a good idea to rule something else out however,
Note that aquagenic pruritis is not related to the level of platelets. It is related to histamine release from mast cells. This can also be an issue with MPNs as deregulation of the JAK-STAT pathway does more than make too many platelets.
I can't speak to the effectiveness of HU, but interferon works well for controlling my itching. Another suggestion is to get your body covered as quickly as possible once exiting the shower. Thermal clothing is a huge help. It's actually the temperature change of the skin that triggers the histamine reaction. The reason it happens after coming out of water is there is a big temperature swing as water evaporates off the body no matter how much you try and dry off. When you cover your skin reduces this temperature differential.
I have exactly the same sensations but now manage it rather than cure it. I take beta alanine which you can buy in most health shops. Its amazing ...dont know why it works but you will see lots of pv patients use it.Manage your bathing by using cool water and I never shower as it stings like hell after.
It is reassuring to hear that others are experiencing similar symptoms. Would you please tell me how much Beta Alanine you take and how often. I would like to try it.
Thank you so much. I just bought a jar of powdered beta alanine and took 1/2 tsp (this before I got your response). I just showered and no stinging and burning. I can't believe it yet! If this continues it will be a life changer.
That sounds like typical MPN itch, mine can feel as sprayed with diluted acid, not like a normal itch. My experience is it’s not related to how high or low counts are. There are lots of things people find helps for some people, the big hitters I found to help are Ruxolitinib and also UVB phototherapy, and aerobic type exercise for 30 mins pre shower. I hear good things about beta alinine but have not tried it, wishing you relief as it’s a horrible symptom.
Thank you for letting me know that your experience is similar to mine. Since I am seeing a very experienced MPN doctor, I am surprised that she is not aware that some people experience this symptom like acid, rather than itch. But it could be that they want to rule out any neurological disease before concluding that it is caused by the MPN. I started UVB treatment twice a week three weeks ago and am taking Zyrtec and Pepcid every day. I just got a bottle of beta alanine and I am going to try that next. I will let you know if the beta alanine or any of the other treatments help. My doctor is trying to get Ruxolitnib approved for me.
it looks like your on it, you may find UVB works better if you do it more often say 3+ days, I did it for 10 years and bought a machine and did low dose daily to avoid over doing it and risk of skin cancer , I am now on Rux and stopt the UVB about a year ago, found it worked very well if not 100%
I took 1/2 tsp of powered Beta-A this morning and after exercising took a shower. So, far I have had none of the stinging, burning I was experiencing. JAK girl replied that she takes 2 800 mg of B-A in the morning. I can't believe I may have found something that helps. Please try it.
- anyone else experienced this? Yes, it's one of the most common side effects of an MPN
- was it considered an MPN symptom? It wasn't by me initially and may not be by some doctors but any MPN specialist/haematologist should recognise it.
- how was it treated? Ah well, there's the challenge. There's no one treatment and different people find different things may help. I was originally advised to use body lotion/moisturiser after a shower to 'lock in' the moisture but this made no sense to me whatsoever and didn't help anyway, especially as it's moisture that can cause the reaction! I was also advised to 'pat' my skin dry with the towel rather than rub it. You might find this item on the pvreporter website helpful:
As you will see, there's a wide range of suggestions regarding what might help. As hunter says, it's caused by Mast cells de-granulating and releasing histamine. My last discussion with the specialist on this topic identified that she doesn't actually know just why this happens which I think the next article confirms. I think as well to describe it as 'itching' grossly understates just how bad it can feel. For me it's a cross between being badly stung by stinging nettles (you might call them something else in the USA) and having hundreds of pin-pricks going off under the skin. You might also find this article from pvreporter explanatory:
I find having a cold shower every other day combined with Curcumin and N-AC supplements helps to reduce it and mostly stop the itchy skin attacks although even a cold shower causes some discomfort for about 30 minutes. I occasionally have an underlying itchiness so to calm it I take an anti-histamine (cetirizine hydrochloride) with 2 paracetamol tablets. I've also found certain foodstuffs can cause a reaction especially salty foods. Some of the newer drugs may help but I'm not particularly tuned in to that yet.
I take Hydroxy and it appears to make no difference to this problem and for me the blood count data doesn't seem to be related either. I believe some people with an MPN never have this reaction whereas the rest of us (85%?) do. I think, sadly, that dealing with it comes down to experimenting and trying out suggestions from others. If you do decide to take any supplements/medications do please check with your haematology team first.
Hi finlay. Thank you for your very thorough explanation of this phenomenon. I have read through the various literature and suggestions and have been trying a number of them as I mentioned in my post I just tried Beta Alanine -- 1/2 tsp. this morning and showered after exercising. I didn't have any of the stinging, biting, burning sensations I had been having. I just sat and waited for those sensations after the shower not believing anything could help. But, this worked this time. I will continue to use and it and hope it continues. Have you tried it?
I haven't but I think I came across it in the past but didn't pursue it. Not sure why. A brief look on the internet just now comes up with it causing an itch! I buy my other supplements from Holland and Barrett in the UK like jackgirl10 so perhaps worth trying it after checking with the medical team. Thanks.
I have looked at beta alanine a couple times since I heard it mentioned on here, but never follow through as it says can cause an itch which I already have and dont want to make it worse, is it a powder or a tablet am wondering now to give it a go
Hi you sent your message to Jackgirl, but it was forwarded to me. I have been useing Beta-A powder 1/2 tsp every day since I first tried it. It does give a slight tingling sensation for awhile, but nothing like the terrible stinging, burning that I had before. The slight tingling is not troubling to me at all. I think there are timed release capsules of Beta-A that are supposed to minimize tingling. You would have to try it to see how you experience it after running it by your doctor for his/her opinion. So far, it has been a Godsend.
thanks havashan, do you mix it with water and drink it or sprinkle it on food or something, I have slight relief at present from itching its milder not so intense and can have itch free day if i am lucky, not really sure if its the antihistamine or good bloods at the moment but dont really want to take antihistamine indefinitely either, think will give the BA a try thanks have a good weekend
My guess is the type of itch they are thinking of is entirely different from the PV pain points many of us know. I started to get minor stings after starting Besremi, but mine is not big trouble so far. Beta is good to know about if it gets worse.
Interesting observation is soaking and exiting a hot tub doesn't make a problem for me, but a shower or rinse does.
Thanks EPguy, how strange I would have thought hot tub would have been a no go, whats also strange is in the beginning prior to dx when I was trying to work out why itching after a shower a bath didn't cause the itch although now it does, I have had itchiness for years now only recently dx but it has never happened when on holiday abroad even this year when itching been at its worse and others say doesnt happen abroad too
I agree a warm/hot soak should make trouble. I think my itch is caused by interferon (Besremi) since it started when I started that, it is a known possible effect and a sign the IFN is doing something. In my case it's minor and I would trade that for the malaise any day. But I know for many MPNs it's severe.
If one finds improvement in nice happy, or at least different, places, it does suggest interaction with emotional factors. These are very real and I know I can have such effects too.
It worries me because I have to now chose a medication, its hydroxy or Pegasus as first line for me as dx just in last couple months, I have BMB on Thursday 🙈 then scan next week then need to make a choice, to be honest I dont know what is going to help me choose, I dont like sound of a chemo even though i know its low dose, i have had a BCC years ago, was swaying to pegysus but the side effects on that scare me to, I know everyone is different but they say MPN'S are so rare but we drew the short straw in being on of those very few people already, my bloods are well was on range 10 days ago first time with no venesection next bloods Thursday so hope not much has changed, my issue is aways RBC and HCT so they are confident mine is PV, just a thought and you may know if there any other possibilities that anthing else can show in BMB or that they looking for, i am still try to get my head around and learn about this condition sone of you are so knowledgeable, meds worry me as I am well other than few milder symptoms improved with aspirin and venesections and do not want to feel worse ehen meds start, i know lots of you have had a journey with meds getting the right one then dose right, side effects etc
I think you may mean your post to go to EPGuy, but it has been delivered to me. So, I will answer anyway. I have been taking Pegasys close to a year and a half. I take a small dose (45 MCG)) every other week. It has brought my platelets into an acceptable range and I have no adverse symptoms other than feeling a little dizzy right after injecting it. So I take it at night, take a Tylenol and go to sleep. The next morning I feel fine. The cause of the the reaction I have been having to water (stinging, burning, etc) is unknown. It seems to me to be a symptom of the the MPN, but could also be caused by the Pegasys although the onset was after over a year on Pegasys. From what I read online, all of the drugs we take to control our counts come with side effects although we each react differently.
I assume your RBC/HCT was high enough for long enough to make PV Dx clear.
BMB looks for the shape, composition, and appearance of your marrow. This can help to confirm your Dx and provide a reference for the future.
I had an option to switch from HU to IFN. I opted for IFN with no hesitation. Both HU and IFN have the most severe warning categories from US FDA, (Black Box Warning) although the risks are different. The worst ones for either are rare. When starting IFN you need regular blood counts for a while to watch for any of the complications. In particular they watch liver counts and may do dose adjustments.
But only IFN has a possibility of preventing progression and even reversal of the MPN. Even marrow can improve for some. This is not proven for IFN, but for HU there is little evidence at all that such a long term benefit is even possible.
But if you're feeling well and the venesections are not too frequent or large, you could discuss with Dr to continue as you are, many members here do so. You're right that the meds can affect your quality of life even when they are working well.
thankyou so much for guidance, I do think I need a little more time and whilst i said i didn't want to start meds till August was over so we looking at my return visit to consultant end of sept, I now am driving to France end of October so will say definitely not till after that as do not want to deal with any side effects whist having a long drive, I think I will discuss putting off till start of next year if poss, I am well at the moment and as its all new to me I am still trying to get my head around the meds etc unless BMB or scan show something new, and its a big decision deciding on meds, I believe meds are due to being aged 60 already, last blood test showed the biggest drop i have had for HCT so far, 44.8 to 40.4 I have never had drop so big but had been having venesections ever 7 -10 days for couple months, will be interesting to see where i am this week as skipped a venesection on the last blood test and when i go this week will be 19 days since last VS hoping still below 45, dreading BMB Thursdays but will have to be brave
I agree best not to change things till after the trip. Can you keep up the Ven while away?
By some some care methods a bell goes #Ding!# at age 60 and we suddenly need cytoreduction. But nothing is that simple of course.
That is a frequent venesection schedule. As you can see in posts here, long term and frequent venesection can lead to iron imbalances and other troubles. Could be why your Dr wants to try other options in case you continue to need at that rate.
thanks EPguy the trip is just 5 days to Disneyland Paris so VS would not be a problem but am hoping they start to have bigger interavals now too, one last question and I promise to leave you alone am aware been taking up your time, in a letter from consultant at the end it asks me to have an eye test prior to meds commencing is there risks with eye sight with the meds, I will ask at my next appt but find answers on here are more personally based, thanks again
Esp if you're considering IFN (PEG, Bes) you absolutely should get the eye exam. It's recommended in the Rx procedures. I got one sort of by coincidence before starting.
Retina troubles (Retinopathy) is a very rare but potentially serious risk with IFN. I had weird eye issues when I started Bes and now go for regular eye appts. All is ok so far. In fact my vision is provably improved since starting Bes, this is not known with IFN, so maybe it's the NAC (N-acetyl cysteine) supplement I started about the same time.
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