I started with ET but now have PV and have been on Peg for about 6 weeks with phlebotomies occasionally. My Hematocrit has gone down but my platelets are going up so the MPN Dr wants me to take Hydroxyurea at 500 2-3 times a week with low dose of Peg at 60. He really wants me back on hydrea but I couldn’t tolerate it after a year. I’m thinking I need to do something as the platelets are rising! I so don’t want to do hydrea!
Anyway… it’s so hard to figure it all out. One thing that’s overwhelming at the moment is the itching and stinging! It’s getting worse. The Dr says the Peg can exacerbate it but I don’t want to do the hydrea, as I said. I had been taking Zyrtec and sometimes a hot bath with Epsom salts and it always helped but not any longer. It’s just unbearable and it’s definitely putting a crimp in my daily life. Does anyone have any tips to eliminate it? Thanks so much!
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Airslie
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hello Airslie, all my sympathy for your burning, itching; you’re right it can feel unbearable. Having tried many different antihistamines, Fexofenadine 360-480 mg over a 24 hour period seems to be the only thing helping me. Keep very well hydrated ( glass water every hour) & we’ll moisturised. Do hope this helps 🤞
Hi, all my sympathy for the itch. I itched for six years , it was all consuming, unbearable, and dominated my life. I had two respites of three months when I had phototherapy . The itch stopped when I started Rux but my legs especially around the knee area continue to burn.
When I had to live with the itch the best for me was taking a fexofenadine about forty minutes before washing/showering, an oil based soap/moisturizer which I applied prior to the shower, and an anti-inflammatory diet to which I still adhere. I didn't itch when exercising but you can't exercise 24 hours a day, and just getting into the outdoor clothes would trigger an attack.
When I first started peg my platelets went up from 793 to 846 in first 2 months and then have steadily been coming down. I hope you get the itching sorted as it can be awful. I think Claritin has been mentioned on here as an option.
so glad you posted this. I am in the same position re the itching. I recently came off Ruxolitinib where I had no problem and have been on fedratinib for 2 weeks. The itching is unbearable at times. I hope the fedrat will suppress it soon. Is there a consensus of the best antihistamine
several recommended the fexofenadine.. AKA Allegra in higher dosages and it has been helping a lot! Please see Grendall’s note below on dosages. I hope it helps! My best, Karen
I had the same . I did not / could not shower for 9 months.Unbearable. Going onto Hydrea (PV since 10 years) seems to have got the bloods down and that has almost cured the pruritis. Seems you cant do this. Keep to cold sponge baths when necessary.
After trying all possible antihistamines, cremes and bathes with oatmeal, the only thing that really helped is beta-alanine (1g taken half an hour before the bath). Hopefully it will help you as well.
for some small minority Peg can make itch a lot worse, it did for me, we are all different re what sorts itch , some do well on antihistamines etc, I have tried them all and for me the big hitters are Ruxolitinib and UVB phototherapy, I hear good reports on Beta Alanine , I tried it at 800mg and it made me very tingly for a few hours, so if trying it maybe start at lower dose and build up, if I think back to how bad the itch was pre Rux I suppose I would prefer the tingling of BA to the vicious PV itch. If you want more info on UVB feel free to ask, I did it for 10 years pre Rux with good results. I also find exercising helps itch pre shower, say brisk 30 min walk or jog etc, I found the longer and more vigorous the exercise I itched less, if going to try that best to build gradually if not used to it.
HI, I tried many treatments for itch, burn (UV light treatment, antihistamines) which didn't help me. Beta Alanine (1/2 tsp) dissolved in a glass of water in the morning has alleviated those symptoms after I shower or bathe. It does give me a slight tingling feeling for awhile after I drink it, but it is not unpleasant and nothing like the horrible burning and stinging that I used to feel.
since being on Ruxo for the last 4 years I have had no itching. It was unbearable before. Sadly I am now getting other symptoms which indicate the efficacy of Ruxo is wearing off, so maybe will be put on Fedratinib. SkipperL
hi, sorry to hear about your itching, I know it can become consuming! I’m 67, male, 15 yr ET patient now drifting into PV territory. 14yrs on hydrea recently went to to PEG due to side effects becoming unbearable , now taking 180 dose of Peg. Platelets (and reds and whites) went up along with hematocrit as I tapered off hydrea, itching intensity went way up. Arms, thighs, chest seem to be the most prone to the itch, it’s maddening at times and sometimes completely stops my day.
Itch relief tips—no more warm baths or long showers. Keep anti-itch and moisturizing lotions at the ready always in the fridge, the coolness helps a lot. I also take generic zyrtec each nite but also take generic pepcid each morning religiously. It seems to help. Also at the start of an episode sometimes cool wet compresses/wash cloths can be effective in heading off an attack and can provide quick albeit temporary relief. Have had so e success also with beta alanine. Stress also seems to induce these episodes for me as well but often it just starts randomly in my foreams or thigh and then seems to pop up all over.
Good luck, I hope this helps a little and you find relief; as you know it can be elusive.
Hi Steve, Thanks for your response. The Pepcid is interesting. I’ll have to check into that. I did try the Allegra in higher doses and it seems to be helping a lot. I’m sorry you’re going through this as well. I don’t know why they call it itching as to me it feels more like millions of little bee stings in clusters. Unbearable! I hope you can get relief soon! All the best!
I get some mild itching from Besremi and Pegasys. It has responded very well to Claritin. One of our friends on the forum had a more similar problem severe itching similar to what you describe. Her MPN Specialist recommended combining low-dose Jakafi with Pegasys. Jakafi is well known for its efficacy in dealing with the itching. It would also help reduce the thrombocytosis.
Since you know you are hydroxyurea-intolerant, you might want to review the option of Jakafi with your MPN care team. Perhaps that will be an option.
Fexofenadine seems to be helping a lot! I upped the dosage and take it twice a day and itching has been minimal, thankfully! Thank you for the info on mixing Jakafi with the Pegysus! Something to discuss with my MPN. I don’t know if it’s worse since my platelets are up.. could be. It seems to be taking a while for the Pegysus to kick in. I don’t want to go back to hydrea. I’m so looking forward to things leveling out.
Glad to hear you have found some relief. it would make sense that there could be a correlation between increased platelets and the itching even though the platelets are not what make you itch. That is more likely to be mast cells/histamine release.
Hopefully all of the above will come under control on your currently treatment plan.
Itching is a tell tale sign of an allergic reaction
it depends how high your platelets are. The only med I can use is anagrelide for ET. It causes me heart problems when I take 2 together or more than 4 a day. As long as my thrombocytes stay under 750, I’m ok. If above, I take 4-5 on alternating days to get them lower. My thrombosis are also often around 450, then I take 3. From what I know, as long as we have the aspirin, up 750 is ok. I’ve read from others here with ET, that up to 600 and even more, they don’t have treatment at all except aspirin. Don’t know about PV.
I hope for a good solution. Life with itching means activated mast cells (immune system) and that is inflammation an illness driver. We must keep symptoms in check! HU is a heavy drug. I have terrible neurological symptoms when I started it. Lots to think about here.
Turmeric, especially Curcumin is anti inflammatory. Perhaps you can try that to counteract the itching till you find a solution. Or a low histamine diet.
from what I understood, the itching started after they changed to Pegasus. Generally, except for coincidence, when we make a change in food, meds or creams, etc and we suddenly start itching and it keeps getting worse, its the factor in our lives that we changed that causes it. I thought the itching that set in on me was my ET. But then found out that I was in menopause. Suddenly. My skin really needed moisture.
Thank you! I am concerned my platelets are up as I’m having so much itching lately, my cheeks are flushed and my ears are ringing so loudly. Thankfully I will see my MPN and have blood work on Tuesday. I’m taking Tumeric and NAC for inflammation every day and baby aspirin 2 times a day. The Allegra that was suggested has been helping with the itching.🙏🏻
I too have benefitted from taking Fexofenadine twice daily, the first dose of 120mg twice daily didn’t really work but I had to increase my dose to 180mg twice daily via the Heam Doc and this has worked great for me, good luck 👍
Fexofenadine has been the only antihistamine that works (to a degree) - initially on 120mg daily; now 360 - 480 mg daily usually helps. I’ve tried beta alanine, but not effective for me. Plenty of fluids seem to help too. Good Luck!! It is so much more than an itch 🥴 I hope you find some comfort 🙏🏻
I found taking a tepid shower, not bath, and using an oatmeal soap or body wash helped reduce the itching. Also, I patted my skin instead of rubbing it with a towel when drying off. Hope this helps.
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