Can anyone help with itching problems associated... - MPN Voice

MPN Voice

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Can anyone help with itching problems associated with taking Hydroxycarbamide

Pierreg profile image

Hello. My issue began in August 2020 with a persistent itch to my upper right arm which when scratched became worse. The itching spread to my back and legs and became intolerable. Consulting my GP I discovered that I had had a high platelet count since 2017. This had never bothered me until the itching began. To be brief blood tests followed resulting in me being referred to Haematology. I was diagnosed with ET and prescribed Hydroxycarbamide 500 mg one tabled per day which I started mid December 2020 just a week ago. My understanding was that this would solve the itching by reducing the platelet count the high count being its source due to the release of excessive histamines and other chemicals into the blood. I had previously been prescribed Fexofenadine antihistamine by my GP for the itching and asked the haematologist if I could take this alongside the Hydroxycarbamide. This was agreed and I have taken but unfortunately so far the itching is if anything worse. I wondered if anyone might have had a similar experience and found an answer?

Thank you

33 Replies

Sorry can’t answer your question re Hydroxycarbamide but drink plenty of water, moisturise a lot - Aveeno and Olay suit me, wear cotton next to skin and avoid getting hot. Perhaps a different antihistamine may work but, as always, check first with your haematologist. Every sympathy, not nice. Kind regards Aime x😻😻

Pierreg profile image
Pierreg in reply to Aime

Thank you for your advice You won't believe how much it means to know there are folk prepared to help. It is hard for any one to realize how distressing itching (pruritic) skin is unless they have experienced it as there is nothing to see, no rash or anything.

Thanks again

🙂

Aime profile image
Aime in reply to Pierreg

I know, it's a deep sore, burning itch, others dont understand how horrid it is. Hope these suggestions help. 😻😻

In addition to all of the remedies that you've mentioned, pay attention to your diet to see if there is a coincidence of whether or not your itching is triggered by something that you're eating. This was the case for me. It turned out that eating anything with chocolate would triggered me to itch uncontrollably. Now, for the most part, I only itch after taking a shower. Taking Zyrtec and Pepcid AC prior to showering has helped me to minimize this. Good luck in your search for the appropriate solution!

Pierreg profile image
Pierreg in reply to ja66ck

Thanks for your advice. I will try by deduction to see if there is anything I am eating that triggers it and another person has advised to drink a lot of water but I am wondering if I am allergic to the very drug that's supposed to be controlling the initial itchy symptoms. Having to wait now until I see the Consultant at next blood test. Hay ho

Thanks again for responding

We are all different in what might help our itch. Many find their itch goes away once their blood is controlled but there is a group of patients where the itch doesn't disappear. I'm one of them. Try many different antihistamines (be persistent with your GP). Definitely keep your body and skin hydrated. Also BETA-ALANINE (a body builders amino acid) has helped many (I take a small of BA in 300mil of water 30mins before washing). You need to do your own research and then ask your consultant what he thinks. Meditation has also helped me not to react to my itch. Good luck.

Pierreg profile image
Pierreg in reply to EleanorPV

Hi. Thank you so much for your reply and advice. Having knowledge of others who are going through these trials is an immensely helpful support that you can't get from the doctors, After all they are very unlikely to have had the problem. I will be pushing for different histamines and ask about Beta- Alanine. I do hope that you will find the answer to your own issue.

Thank you once again for being kind enough to answer.

Hello Pierreg .. I have ET ...Jak 2 ...also have itching ....I was told to take Phenergen (anti histamine) by Nurses at Guys London ...does stop the itching ...but I cannot take daily as they make you quite drowsy ....I don’t think it can be anything to do with high platelets as mine are 375 which is somewhere near normal..,I also don’t think it’s the Hydroxycarbomide as I had the itching before I took it ...perhaps we all react differently to the same drugs ??I think it’s part of ET ...there are so many annoying irritants that are present with Mpn ...Sorry if this is not that helpful but I have one of my days where I hate this condition so much I could scream ....moving around so much (on the sofa) look like I have flees or worse,..really itchy day ...

I hope you find some relief and wish you to find something that helps with the itching ... Lainie x

Pierreg profile image
Pierreg in reply to Melanie66

Thank you so much for your reply. I think you are right about the vagaries of MPN and reacting differently to medication. I am going to look into Phenergen which does sound good. I think I would not mind being drowsy as it would be such a releif..gasp!!I am so sorry you have such distress and I understand how you feel about sort of fleas.

It may sound pathetic but I weep hard when it gets too much which very strangely gives a moment of relief. I do hope you also will find an answer....Px

Melanie66 profile image
Melanie66 in reply to Pierreg

Thankyou x

Aime profile image
Aime in reply to Melanie66

Phenergran works for me too but as you say you can only take at night. Xx😻😻

Hi Pierreg so sorry to hear you have the ‘itch’ - I had mine long before taking hydroxycarbomide and the drug made no difference.! It may take time to find out what relieves it for you as we are all different - it is the most unbearable condition which as someone has already said nobody unless they have it can comprehend! Temperature change was a trigger for me and I always Dressed in the bathroom after shower with my clothes warming on towel rail which helped a lot. I agree with all Aime and Eleanorpvsaid.

I have PV and the itch has now retreated to say 1 or 2 out of 10 with Ruxolitinib but don’t think it’s available for ET but you could always ask.

Good luck with your quest and drink loads

Anna xx

Pierreg profile image
Pierreg in reply to S031251

Hello. Thank you for your advice about drinking a lot (of water). I have found that this seems to reduce the intensity of itching, makes sense I suppose. I am going to ask about Ruxolitnib. Do take care and best wishes to youP.

Hi, can empathise. In the summer had it so badly that my whole arm had hundreds of small bleeds under the skin and looked like raw meat, if I knew how to attach a photo to the reply I would. I found that Eurex cream helped to some degree. I am on 9 Hydroxycarbamide a week plus other meds.

Pierreg profile image
Pierreg in reply to KentBee

Hi. Wow that sounds hard to have coped with. It is such a battle with this problem. I haven't had anything visible but the itching is draining. I do hope you will find that eventually the Hydroxycarbamide will work for you.

Best wishes

P.

Hi, I started having itchy skin problems last year without knowing what caused it until I was diagnosed with PV in February 2020. I was put on Hydroxycarbamide in June 2020 but this did not relieve (or make worse) the itchy skin problem. Itchiness is mostly in contact with water (but not every part of my body - mostly arms and/or thighs) but can also occur other times, mostly in the evening. Initially I had to resort to a combination of anti-histamine (certirizine 15mg) and combined aspirin/paracetamol to suppress it but didn't want to take this regularly. Even though my blood counts are now all normal (apart from slightly low haemoglobin which I'm told can contribute to itchiness) I was still having problems with this.

There is hope though - as others have suggested certain foodstuffs can perhaps aggravate it but it's a good idea to keep a meds/food/itchy diary to see if there's a pattern. For me it appears to be salty crisps and biscuits that bring it on (shame) but it does seem to be very unique to each person. I never found moisturising the skin after a shower did anything to help at all (my skin is not dry anyway). I also suspected liquid gaviscon (which I used to take sometimes) can also aggravate it.

BUT - the thing I've found the most helpful is having cold showers (not just tepid as the medics tend to advise) combined with using an organic nettle based soap from Scotland (oddly it doesn't sting). This is after having heard about Wim Hof ('The Ice Man') and getting his book. It comes across as a bit bonkers but there appears to be good evidence behind his suggestions and the benefits on the immune system and that increasingly talked about inflammation. Hard to face in this colder weather but since starting on this about 3 months ago I've not had a single itchy skin attack other than some slight tingling immediately after the shower which passes after about 10 minutes. I can't yet face this daily so I have the cold shower every other day. FYI, I am also taking a turmeric supplement and an NAC supplement (with consent from the medics - both are suggested as good for relieving MPN symptoms and their anti-inflammatory effect). Try looking at pvreporter.com as there's an article there about itchy skin issues - here's the link:

pvreporter.com/strategies-t...

There's also information on this website about diet/specific foodstuffs especially from Carolyn Katzin.

You'll see from this that things that work for some people don't work for others, including cold showers! I also tried anti-itch creams such as E45 or Eurax which worked initially and then didn't.

Good luck,

Paul

Pierreg profile image
Pierreg in reply to finlay2106

Hi finlay This is a horrible thing isn't it! Thank you for all your advice. Very good of you to take the time. You clearly have some technical knowledge in the area and I will now ask about Ruxolitnib. I absolutely note your risk/ benefit comment and understand that this is a problem that affects different folk in different ways. Excuse my ignorance but could you clarify what HU is.

I am due for a first blood test after commencing with Hydroxycarbamide early January and will consider how to proceed and look at consulting with an MPN specialist although I imagine this might be difficult currently with the pandemic.

Many thanks again for replying

Best... P.

Pierreg profile image
Pierreg in reply to Pierreg

Hi finlay, I do apologies I seem to have responded to another post and sent it to you in error but thank you so much for your advice particularly about keeping a meds/food/itch diary and also the certirizine /asperin/ paracetamol.

Best wishes and apologies once again

P.

You are correct in thinking that the deregulation of the JAK-STAT pathway is what is responsible for the itching as well as the thrombocytosis. However, these are two separate processes and lowering platelet level is separate from reducing the histamine levels (and the levels of inflammatory cytokines). Many people find HU does not help with that because of how it works. Ruxolitinib is the medication that is most commonly used when significant itching is the issue as it is much more effective for that symptom. It is also much more expensive, so many health care systems resist its use even though it is both more effective and a lower risk medication. Please note that ALL of the medications used to treat MPNs have a risk/benefit profile and we each respond differently to the meds.

In the short-term as the others have indicated maintain a healthy skin moisture barrier. I use a ceramide-based body cleanser and cream (CeraVe brand). For flares of the eczema that I get I use Eucrisa ointment which is very effective. You can also look for the triggers for yourself. One common culprit is scents/dyes in laundry products. Something like ALL Free and Clear detergent/softener can make a difference.

Based on what you describe, I would suggest consulting with a MPN Specialist. Most docs, including hematologists, do not have the KSAs to provide optimal treatment for MPNs. Here is a list mpnforum.com/list-hem./ .

All the best. Hope you find relief soon.

Pierreg profile image
Pierreg in reply to hunter5582

Hi. This is a horrible thing isn't it! Thank you for all your advice. Very good of you to take the time. You clearly have some technical knowledge in the area and I will now ask about Ruxolitnib. I absolutely note your risk/ benefit comment and understand that this is a problem that affects different folk in different ways. Excuse my ignorance but could you clarify what HU is.

I am due for a first blood test after commencing with Hydroxycarbamide early January and will consider how to proceed and look at consulting with an MPN specialist although I imagine this might be difficult currently with the pandemic.

Many thanks again for replying

hunter5582 profile image
hunter5582 in reply to Pierreg

HU is the common abbreviation for hydroxyurea (AKA Hydroxycarbamide). Ruxolitinib (AKA Jakafi, Jakavi) is a different class of medication used to treat MPNs. HU is a cytostatic medication the interferes with DNA activity. It reduces hematopoiesis (production of blood cells) by reducing the activity of hemopoietic stem cells. It also affects other cells, hence its toxicity. Ruxolitinib is a JAK2 inhibitor. It slows down the activity of the JAK2 receptors on the hemopoietic stem cells. The JAK2 mutation causes these cells to self-phosphorylate - essentially turning the "on-switch" always "on" - which is why our bodies make too many blood cells. This also causes our bodies to make too many inflammatory cytokines and can produce too much histamine. This is why we get so many secondary symptoms, including the itching. Ruxolitinib is more effective for these secondary symptoms because of its mechanism of action.

Ruxolitinib has its own risk/benefit profile. All the the MPN meds have potential adverse effects. Ruxolitinib is considered preferable for control of secondary symptoms. It is also safer for long-term use than HU, particularly for anyone under the age of 60. It would be best to consult with a MPN Specialist who can explain this in detail.

Hope that helps

Pierreg profile image
Pierreg in reply to hunter5582

Hello, I am most grateful for your detailed information, this is the sort of help that is needed when contracting such a problem. I will, I hope diplomatically, raise issues with the hematologist at my next appointment. Perhaps one has to push the boundaries a little in order to access the most appropriate response to your particular case.

Many thanks once again for your help

P.

hunter5582 profile image
hunter5582 in reply to Pierreg

Diplomatic is good. Passivity is not. Assertive patients receive higher quality care. Passive patients do not. Sadly in many healthcare systems providers will default to the pressure to prescribe cheaper medications even when a more expensive medication would be a better choice for the patient. It is up to patients to advocate for what is in their own best interests. Hopefully this can be done without entering into an adversarial relationship with the care provider. If a care provider goes there when a patients advocate for themselves, then that provider should be fired and replaced with a more suitable provider. That is each person's right as a patient.

All the best to you on this journey. Hope you get answers and relief ASAP.

Pierreg, try 15 ml three times a day of liposomal vitamin C. along with 10 ml of liposomal curcumin. In addition, 12 mg of astaxanthin twice a day. Research how each affects Jak2.

Pierreg profile image
Pierreg in reply to Pte82

Hello Pte82. Thanks so much for the advice, will look into. Best wishes.

Pierreg

Hi sorry about ur itching I feel for you I found the only thing that helped me was to put myself under a cold shower then I used those thermal/cold sleeves you put in ur bottle of wine I’d put them in the freezer and put them on my arms or a cold flannel. I had numerous supplies of cold things ready in the freezer to change over. I used to get this for about six months at a time but frightened to say but haven’t had it now for a couple of years but I do suffer terribly with licheon sclerosis ( a bit like thrush but much worse). I have chronic neutrophilic lukeamia But not many of us if any on this site. I do find a lot of similarities though so that’s why I joined. Hope you find some comfort soon. Stay safe

Pierreg profile image
Pierreg in reply to Brendaf

Hello. Thanks very much for your advice. So pleased you found a way to reduce or stop the itching. I do feel for you though. Hope you can get some help with the sclerosis.

Hi, I understand your pain completely. I've et, progressed to mf and was started on peg interferon which started intolerable pruritus. It was worse after a shower. Its true to keep hydrated, moisturise with unfragranced lotions. Dont scratch, although you want to. I found putting pressure on itch helped. Fexofenadine needs to be with famotidine to work. I hope this helps. I've since started ruxulitinib and finally the itch has gone but it was miserable and I'd cry in total frustration. I hope this helps and you get some relief. Low hb can make itching worse too, sue

Pierreg profile image
Pierreg in reply to soomoo

Hello Soomoo Thanks so much for replying. I couldn't stand showering it would drive me up the wall. I just very carefully wash and dry and absolutely no way scratch. I have tried pressure and it does relieve! I am going to try ruxulitinib, others have mentioned this to. The best thing you have said is that your itch is relieved. I wish you well and thanks again for taking the trouble to reply.

P.

Hi, I don’t know if this might help, but my grandson had eczema, I was told that if I ground oatmeal to a fine floury powder and put It in a tepid bath, it would help. I did and he did stop scratching and was a lot happier. I ground it in the coffee grinder. I didn’t use any soap, just played games with him in the water until he had had a really good soak. Perhaps worth a try.Take care.

Pierreg profile image
Pierreg in reply to Mardigras

Hi Mardigras, thanks so much for your reply. I will have a look into this. I have no visible signs of the problem on my skin I feel it is very much inside but that is not to say a topical treatment wouldn't work. Thanks again for replying

Hello PierregSorry about the horrible itching, it has also been the bane of my life for the last 5 years, even though my blood levels only rose in 2018. The lowering of my platelets with hydrea made no difference to the itching and my haematologist said the itching was nothing to do with my blood disorder because I itched way before my bloods were abnormal. Thanks to encouragement from this site I requested a referral to an MPN specialist and it emerges my red blood cells were consistently high and the platelets at their worst no higher than 600 so I have been rediagnosed with PV with an overlap into ET, the specialist thought the itching was definitely due to the bloods and has recommended that I should change from hydrea to interferon but am waiting for approval for that. Have since been back in touch with the dermatologist who thinks the itch is down to the blood disorder.

So to manage the itch like all my friends here on this site I try all sorts of strategies. My experience sounds like Anna's in that it is both the shower and a change of temperature that start it. I found the fexofenadine works best when taken half an hour before I get out of bed, and sometimes take another later in the day especially if I need to shower in the evening. I also try to keep the rooms of the house at the same temperature about 19 - 20 degrees, dry myself from the shower in the bathroom by patting dry and apply an oil based moisturiser, I use hydramol, the water based ones just start the itching all over again, and I also warm my clothes on the radiator. I have also noticed the itching doesn't start if I do a run or vigorous walk before the shower. But as all us pruritus sufferers know it can start again for apparently no reason.

For the last couple of months I've mostly followed an anti-inflammatory diet, try watching some of Angela Fleischman's talks.

Whatever I'm doing I would say my itch is now down to a 3 or 4 out of 10 when previously a 9.

I really hope you can find something that helps you because I understand what you are going through. Many times I have been in tears over it, but is so much better these days.

Good Luck

Pierreg profile image
Pierreg in reply to JP1952

Hello, well that is revelation! I had this raised platelet count since 2017 but it never bothered me until August this year with pruritus, as I said in my posting. I do appreciate that everyone is different and this horror can manifest itself in different ways but it is interesting that the hematologist I see has said that the HU will resolve the itching. Well I have been on one tablet per day now for two weeks, I know this is a very short time, but if anything the itching is worse. Therefore if this continues I will take your example and request a referral to am MPN specialist. As for the rest of your advice I am paying close attention to the content and will be acting upon it.

I want to thank you so much for your help and am very pleased that you feel better than you did. It has driven me to tears also!

Best wishes

P.

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