itching withMPN

[Itch]

I have been taking Fexofenadine for severe itching for several months with huge relief. Suddenly the itching has returned to a fairly unbearable level; even increasing the fexofenadine has no effect. Any body have any helpful suggestions?

Thanks

[hunter5582]

You can always try a different antihistamine to see if something else works better. Note that Jakafi is one of the most effective meds for resolving itching in MPNs. It may be that the return of the itch increases the benefit side of the risk/benefit analysis you have to do.

Hope you find a solution soon.

[Itch in reply to hunter5582]

Thankyou so much, have tried many; I think you’re right & probably time to commence Ruxolitinib.

[Otterfield in reply to Itch]

For me, Ruxolitinib was like a miracle in stopping the itch, which of course is nightmarish.

[Heidi-W in reply to Otterfield]

I've been thinking about you Jennie- how are you getting on and the transplant go ahead as planned. Really hope you are doing ok.. Heidi x

[Otterfield in reply to Heidi-W]

Thank you. I've been meaning to do a post but I am constantly SO exhausted! I'm on day +8 after transplant and feeling very weak and ill but at least that's normal!

Jennie

[Heidi-W in reply to Otterfield]

Oh bless you Jennie. Really glad it finally happened and hope you start to feel better soon. Got everything crossed for you xx

[ainslie in reply to Otterfield]

wishing you strength and optimism post transplant, it’s admirable you are still posting on here trying to help people, important presumably to get plenty rest and not get too streesed trying to de stress others.😀

[Cityreach]

Hi, sorry to hear of the dreaded itch I suffer my self so I know what you going through, I was told I could take an over the counter antihistamine too, I also switched from 180mg fexofenadine to citrezeine and on days still take an extra otc one if i feel an itch coming on, I do feel its a bit better but less intense but so are my bloods as the moment so could be combination of both, maybe try a change of antihistamine see if makes any difference, hope it calms down for you

[Itch in reply to Cityreach]

Thankyou for your comments; I’ve tried many different anti-histamines & fexofenadine was definitely working. I probably need to start on Ruxolitinib.

[Owl-fan in reply to Itch]

I had an allergist tell me that the body can adjust to a specific antihistamine over time, so she told me to rotate them every 2-3 months. I have three OTC's that I change monthly. It doesn't eliminate the itch, but it seems to help for me anyway.

[Aime]

sorry to hear of your itch, it’s horrid! Try plenty of moisturiser, hydrate well, as weall as a different antihistamine. Sometimes, I need lots of layers of moisturiser before it takes effect. Hope this helps. 😻

[Itch in reply to Aime]

Thankyou Aime, I’ll try it all - it really feels unbearable at times !

[Aime]

Its definitely worse when I’m not hydrated enough but I do find tons of moisturiser really works. Hope it works for you, as I know how horrid it is. People don’t understand how deep and burning it is! 😻

[Grendall]

Hi there,

I have written previous posts about my itching but funny you should mention it today, I have been for my appointment and spoke with doc as I am the same as you, I was taking fexofenadine 120mg, it slightly helped but didn’t take it away completely. Then just started coming back again with a vengeance!

He has changed my script to a stronger dose the 180mg and still twice daily to see if helps. Also take weekly IFN injections.

I am having and struggling with lots of other systems/side effects as well especially dizziness quite bad at the minute but hoping in time that also settles…

[S031251]

Hi Itch go for the ruxolitinib you may gain a few pounds but it far outweighs the horrible itch. Fenofexadine at 180 did nothing for me - after a week on rux my itch had gone.

Good luck and best wishes

[SoledadBarcelona]

Sorry to hearing it because it is terrible. I use read lights, strict diet and hyperalcaline water to caml down the itching. It is no enought, organic oil of lavanda helps me... until now. I dont want a coktail of drug because of taking Besremi. Check before your level of histamine and microbiote, it can help you to a proper diet. Good luck!

[21Rosie]

The lifesaver for me is Beta Alinine .(this is an amino acid) . Half teaspoon in water prior to showering and it works like magic. Meredith has kindly changed October Bookclub date for November with me.  So October will now be at my place and November will be at Meredith’s.This was recommended to me by my haematologist and from various sites I know it has worked for others too ! It is obtainable in Australia from pharmacies and health food stores and very reasonably priced.

Interestingly my husband (no MPN) has an autoimmune condition and suffers from intense scalp itching . His dermatologist has prescribed various drugs, lotions and potions that made not one bit of difference. He has recently tried BA and amazingly his itching has been relieved. Yea !!

OTC medications did nothing for my itching. The weather does seem to have an impact as well - hot and humid = increased discomfort. Hope you have success with it too.

Rosie

[21Rosie]

wow….don’t know how my book club info ended up here. 🫣

Sorry everyone …please ignore that sentence.

[SeanMc]

Hi there. So sorry that your itching returned. I had unbearable itching too.

I think its related to what i call my gloopy blood

They prescribed Fexofenadine for me too but I found that Benadryl Acrivastine (blue box) works way better. I take one at bedtime with my asprin and Hydroxy Carbemide.

I know the itching left me feeling depressed so can totally sympathise.

Hope it improves for you.

Sean

[Itch]

Wow, so many useful & kind responses. It really helps to feel there are others who understand, Thankyou.

I also have a chronic throat inflammation with extreme itching, now wondering if this could also be an MF symptom - had anyone else experienced this?

[havashan]

Hi Itch. Please look at the replies to my post about my problem with terrible stinging and burning after contact with water. As I mentioned, I have tried UVB light therapy, antihistamines to no effect. JACKgirl responded that she had relief taking 2 800 gram capsules of Beta Alanine every day. I tried this and got immediate relief. So far it has continued to make a huge difference. My internist thinks it is fine to take this and I would highly recommend trying it.

[ainslie]

sorry to hear about the severe itching, as a former Olympic itcher I can empathise,

When I was venisecting only I used daily UVB phototherapy, I also find doing 30 min puffing exercise before shower helped, that ie UVB and exercise reduced the post shower itch from being impossible to a doible inconvenience, since starting Rux and getting the dose right I have got most improvement and stopt UVB. I hear good stories about beta alinine but have not tried it.

Not everyone puts on weight with Rux , it can help to reduce sugars and refined carbs and If poss some exercise which is good for everything

[runnerbird71]

I have taken Allegra Allergy (180mg fexofenadine) for years, thinking I had bad allergies. I would itch on my hands and feet and if didn’t take it for five days boom it was back. Then found out I had MF, so I probably had ET. I am 50 now and this started in my late 30s. I am on Jakafi and am still taking fexofenadine 180. Still no itching unless I don’t take it for 5 days.

[Grendall in reply to runnerbird71]

Hi runnerbird71

That’s interesting you saying that if you stop the fexofenadine it comes back after a few days….

I obviously started itching prior to any medication (really bad) don’t have to have any impact with water! Then started on the lower dose fexofenadine of which I though initially wasn't working then I ran out and didn’t renew and ‘Bam’ it came back with a vengeance, I realised then the the tablets must be helping it ease a little but needed something more, the Doc has just started me on the higher 180mg twice daily now and whilst it doesn’t take it away completely I am realising it’s a lot more bearable. 1 good result going forward 😁

[Mandz12]

i used to itch i buy piroton from the chemist i take hydroxycarbamide and have pv . X