Hi everyone
I have ET and diagnosed 18 months ago. The 9 tablets of hydroxycarbemide per week have now brought my platelets down from 690 to just under 400 for which I am grateful. However I am finding my hair thinning distressing. I’m using nioxin and taking biotin. I’m a fit and healthy 70 year old and wondered if I should try pegasys to stop this hair loss. I know I’m fortunate at the moment to only have hair loss but I’d love not to have that. What are your thoughts please. Thanks Irene
My hair got crunchy and thinner on HU (500) Switching to Bes it stopped thinning but still crunchy. On Rux it may be getting more back again.
The cracked finger nails was also gone after the switch.
Hi. Ruxolitinib makes hair grow thicker ( and can be more than wanted ). Other meds seem to do the reverse. Rachel
I had hairloss with hydrea. Got switched to Jakafi and continue to take supplements rich in Biotin. All much better now.
I found hair on peg was worse
I’m taking Interferon and have had no hair loss .
hair loss stopped quickly when I made the switch. Dry skin continues but so much improved. Still need some lotion to help. What is new is itching at injection site and nearby for first few days after injection. Not a problem. Switching was game changer for me re side effects. Hope same for you. Stay safe!
I understand that it's distressing losing hair, but I would strongly advise you not to base treatment decisions on this. Talk to your haematologist about what would be best clinically.
as others have said some also have hair issues on the interferons, as Otterfield said of course hair is important especially for females but choosing the best treatment for your MPN should be the priority. Rux is best for hair but not used that much for ET. We may have different drugs later so it worth bearing in mind if you change meds in the future to a different more hair friendly one it will likely grow back
Hi, you have my sympathy. I have been on hydroxy for 3 years now and have been very upset by the hair loss. So I also went onto using the Nioxin regime and had my hair cut shorter. My hair was shoulder length, very fine and curly, the hydroxy made it thin and frizzy...what a mess. So after 4 months using nioxin and cutting my hair shorter into a bob style it looks so much better, 'feels' thicker and in better condition, even my friends have commented on how nice it looks. Like you despite the improvement I am now considering a switch pegasys purely from the hair point of view although after posting a similar question to yours on this forum some members claimed they experienced hair thinning with pegasys. I will be interested to learn how you get on, good luck.
Thank you Janis. It’s a real dilemma! If I knew that my hair loss would now stabilise I would not be as worried. Do you think that your hair has now stopped thinning? I’ve already got a short hairstyle so can’t go much shorter. My next haematologist appointment is at the end of October so I’ve plenty of time to ponder. Please let me know how you get on. Thanks Irene
Hi, I have become a bit obsessed about it all so I spend ages in front of the mirror checking but I am not sure if the thinning has now plateaued . I am lucky in that I have curly hair so it gives it all a bit of height and a kind of good chaos if you get my drift. My platelets have been increasing gradually so they had to up my dose of hydroxy which did not please me and rightly so, there was renewed excess hair on by brush for a while. Then I began to suffer terrible gastric/acid issues which the haemo consultant said was not related to the drug but the doctor who will be carrying out my endoscopy in a couple of weeks time said the hydroxy is most likely the cause!!. It all seems a constant battle and a great deal of responsibility for us , the patient, who ultimately has to make their own decision on treatment options. I certainly do not mind admitting that all of this now is causing me a great deal of anxiety, for the first couple of years I took it in my stride and just got on with life but sadly it is never off my mind now. Best wishes to you.
I certainly don’t want to increase the dosage of hydroxycarbemide for more side effects. The 9 tablets I’m on have now brought my platelets to just under 400 but I’ve had the hair loss and increased bowel movement. I suppose it could be a lot worse. How many tablets are you now on? Irene
Hi Irene, I take 11 tablets a week now, I have a review in two weeks at the hospital and it may be that my platelets have continued to reduce but I do not feel so well on this medication when I consider how I was pre ET, I am 64 years old and was physically very fit being a cyclist for 45 years, keeping horses, walking, gym, aquafit and pilates. Now I have to force myself to keep all of this up, I am very disciplined so I do achieve it but probably at a lower level....I feel grieved that I am in this situation. If I am to change meds I want to see an MPN specialist, my consultant is not, I do not want to end up with incorrect dosage and after reading many experiences on this forum it appears 'you take your chance' with the drugs and general haematologists. Janis
I have been only on Pegasys for 2 years. I have not noticed any change in my hair.
Hi Na56., I’ve always had thick, shiny beautiful hair. 6 months of HU changed that - my hair became dry, brittle, weirdly frizzy, and I initially lost hair. I switched to Peg 5 months ago and my old hair is back!
I changed to Peg because I had several BCC and concern for the effect of HU on skin cancer. Otherwise the HU was working well to keep my blood counts in normal range. My counts haven’t responded yet to the Peg, but I am told it takes time to get the right dose and for it to work, so I am patient and optimistic that it will work. Peg is pretty expensive, so you need to factor that in when you make your choice.
My hair loss on 4 years of HU was terrible. I also noticed how thin a weak my finger became. I seemed to always be breaking or splitting them.
I have only been on PEG for 7 weeks today and my hair loss has definitely slowed if not stopped completely. I just hope it continues this way after a year on PEG.
I changed from anagralide to hu back to anagrelide and the hair loss on HU was awful but it's finally growing back.
Yes your hair goes back to normal on Peg Interferon. I was very distressed on Hydroxy & after only 12 weeks of it I came off it. In that short time I lost a lot of weight due to gastric problems caused by drug. I felt dreadful . My hair came out & I have long hair it was breaking off & thinning rapidly. I came off it completely . It took 6 months for me to feel healthy & started Peg. My hair started to regrow & I again look healthy & feel well . I am no fan of Hydroxy & so glad I read up on other options . Julia 👍
Hi, does anyone know if it is safe to take vitamin D supplements if you have PV?
Hair loss and hydroxy
HAIR LOSS!!?!!! HELP?!
Interferon
