I have been on Hydroxycarbamide for so long that I forget when I started.
Inevitably I have side effects but these are mild and part of life; itching became a problem a few years back but antihystamine Fexofenadine 120mg kept it under control for a time but then I found that I needed to take it twice a day (that worked) so asked for my prescription to be increased accordingly. I got a firm NO - but it could be increased to 180mg (once a day).
That is not cutting the mustard and my itching is getting worse again.(mainly in the morning after a shower but also later in the day too)
Has anyone found other treatments more effective than Fexofenadine?😬
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quanglewangle
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some people on here do well with beta alanine, in the past I have used UVB phototherapy with great success, now on Ruxolitinib which for me has been miraculous for itching
It’s similar to a sun bed BUT the difference is phototherapy tends to be narrowband UVB only , to be exact it’s 310NM which is allegedly a safe/safer band of UVB, there is no UVA. It seems it’s the UVA and other bands of the UVB spectrum that increases skin cancer risk. I did it for about 10 years daily, low dose and so far skin is excellent.
The above info is what I learned before I started UVB more than 10 years ago so info may have changed a bit since then.
Thank you so much, and so where do I go for this, would I need to buy the apparatus myself for home use, do you have a link perhaps? Will I get a tan too?!
I went to see a dermatologist to ask about UVB, they had a UVB machine in physio dept , I tried it 3 times a week for a few weeks, it worked so I got the name of the machine and bought the home use version. I am in UK and bought Waldman which is/was the best, in US Daavlin is one of the better makes. I stopt using it once I was on the right dose of Ruxolitinib.
Thanks Ainslie I shall look into this as I am too based in UK I will have a look after perhaps enquiring to see whether there is a machine in the area that I could trial, so how does this work for the itching, for example, do you have to use the machine before the shower or bath; or does regular use of the machine keep the itch at bay - I am also going to discuss at my next phone call with Guys in a few weeks, the possibility of a duo meds approach (Rux and Bes) as this could alleviate itch, and also most importantly for me at,, accelerate the reduction in my AB% which had become v high based upon findings last summer. Thank you for your help. Best wishes Sarah
when I was using UBV I did low dose every morning as part of my routine, I had what I called background itch throughout the day and night and more vicious post shower, so I did it to try to avoid itching. I also felt low dose regular ie not making the skin redder than needed was likely to be safer on the skin. Others go to a clinic 2 or 3 times a week and do it that way. I always tried to do the minimum to do the job. Great you are going to Guys, the combo of Rux and Inf should do the trick re itching and maybe on the AB if thats your goal. My expert haem reckons Rux and Inf do the same job but in different ways, this was discussed because I am on Rux and wondered if adding some Peg back in might be good idea , he reckoned no and didnt really see the point of doing both for the reason above. Certainly my AB is now 1.08% on Rux only. Of course we all respond differently and some docs have different views, It will be interesting to hear what Guys have to say on the matter.
Cetirizine is more effective for itch than some other antihistamines. As ainslie notes beta alanine works well for some people. Given that you are experiencing a common PV/MPN related pruritis, ruxolitinib is well known for its effectiveness for this issue. It works much better than HU for this purpose.
The MPN specialist I consulted stated I could take Fexofenadene up to 4 times a day, it was the antihistamine that worked best for me having tried numerous brands. I’m sorry I can’t remember the dosage. Using an oil based soap/moisturizer also helped , and although I don’t itch anymore [thanks to Ruxolitnib] the burning sensation in my legs has never gone and my skin can be sore to the touch or after washing too vigorously so I continue to use the hydro mol. Hot showers suited me better over the cooler ones that were recommended and I found I didn’t itch whilst walking or jogging, unfortunately, it returned on entering the house due to change in temperature. Also, took up and still adhere to a Mediterranean diet which is supposed to be anti inflammatory . All these strategies helped but didn’t eliminate.
The itching is absolutely horrible, miserable, and debilitating. I feel so sorry for you and hope you can find something to ease it. It would be wonderful if Rux could be made available for all MPN itchers.
So sorry quanglewangle - I remember how miserable the itching can make things. I don't suffer much from it these days but it was a horrible issue for me (worse in winter) for a few years if my skin had been wet and/or had a significant temperature change. It was quite an 'aha' moment when I was diagnosed last year and told this was quite a common symptom with MPNs. It may be that something in the profile of my blood counts is what has really made the difference but at the time a dermatologist gave me advice on controlling external factors; over time these have helped damp it all down a lot (no more avoiding showers or swimming for me as long as I am careful!). Reposting my previous reply to someone else here in case any of it helps you.
I stick to a few washing products that are mild and work for me (in my case Surcare washing liquid for clothes, Child’s Farm for my skin and I dress in mainly natural fibres. Dry and dress quickly after bathing (patting better than rubbing) and I use hydromol ointment on my arms (hydromol intensive with urea helped a lot but I can’t get hold of it in uk these days). . When things were really bad I used to apply ice packs to my skin (through a thin layer of material to avoid cold ‘burns’) - this calmed things. I try not to scratch but gently rub or hold the skin and it eventually calms down. I also used Jojoba oil for a bit and that also helped a little.
I used to take 180mg of fexofenadine then later was prescribed 120mg twice a day 1 in morning 1 in evening , hospital asked GP to prescribe they seem to do want hospital request
I totally sympathise. I am also on fexofenadine 180mg daily. It didn't help so I also take famotidine 40 mg daily. It takes the edge off- just. I don't shower in the morning ( I was told the tablets take 3- 4 hours to get into your system). I was also told drink loads of water and use Aveeno moisturiser only. It's a big issue for me . Citirazine didn't help me at all. I also find the looser the clothing the better. If you find an answer let me know. Good luck!!
Hello, I truly sympathise with the awful problem of itching. I have found that any anti histamine only works for a time then best to switch. I have been prescribed much higher doses of fexofenadine to control any flare up & then reduce as itching subsides. I have also found Certirizine helpful in the past. My pharmacist advised me to switch them about as the body gets used to any one after a while.
I also just started on Ruxolitinib and I cannot believe how fast the itching stopped. It is such a relief. So far I have not had any side effects from this drug.
Try to ask for Ruxolitinib ( Jakafi). A small dose ( 5mg 2x daily) has almost completely taken care of itching. As with many of us, I suffered terribly with aquagenic pruritis until my MPN specialist prescribed it for me. Worth the try!
I had the same story.Twenty minutes of post shower hell. Only option is to stop showering and use sponge bath and dabbing (not rubbing) with a towel.Miraculously my (priuritis) itching has started to fade recently. after years of bad itching No idea why.Good luck.
This is interesting to me re itch. I have PV (7 years in) and the itch is only after bathing, showering. I was experiencing it a little, and had some protocols in place such as organic body oil (legs only as this is where itch is worst) before the bathing, minimal soap or shower gel (magnesium salts in bath seem to help) also employ use of homeopathic histamine. However my itching has become much worse since starting BES in Nov. The meds seem to be doing their magic bringing my cell counts gradually down, but its a real shame about the inc+ in itch. I am wondering as my cell counts red- whether this will help the itch. I must admit I ve started bath, shower only every other day now. And as I have long hair this is now washed over the sink as i dont want the shampoo products on my skin. As well as intensity, my duration of itch has doubled, so now about 45 mns, when I simply have to 'deal with it' and not be near anyone, or pestered by my dogs even! I will see how I get on, but maybe think about intro Rux at some point which I ve read complements the Bes quite well.
I highly recommend the histamine homepathy pill (12C) dose - i'd be really struggling without that. Thanks and sending love to you all sharing this path. Xx
Thanks IKEAlover how weird is that, I shall certainly try it, and certainly makes me wonder if I would be better in a warmer climate perhaps. I gave the tip dont rub with a towel - pat dry and get dressed quickly - it reminds me of swimming lessons as a child, and that mad scramble to get dressed quickly afterwards, I hated that too - ha ha - we have to keep our sense of homour don't we!! Interestingly I was in Somerset last week rather than N Yorks where I live, and had as usual, dreading a shower and barely no itch - which made me wonder whether 'hard' water has an impact - I wonder about perhaps fitting a water softener system??
I guess that anything is worth a try! but we have soft water here so that might be a red herring. Also the itch that comes later in the day when I am clothed, though less intense, is definitely real !
I must admit reading the forum I feel quite fortunate that the itch at present is only post-bathing, as it's horrible. Hmmm, I have been in touch with someone else on the forum about the UVB light as a measure to stop the itching - this is certainly worth looking into as well.
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