First of all, thank you all for your support from my initial elevated Platelets count three months ago to where I am today-CALR+. Today, I had a bone marrow biopsy and spleen ultrasound to get some baselines established. I guess my big news on top of all that is that I am just now sitting down having picked my new bottle of HYDROXY 500 mg from my local chemist. I understand I am supposed to open this bottle and take one of these quickly with water so that it doesn’t fall on the floor, break open, kill the cat and corrode the pipes. I’ve already read a lot on the forum about HYDROXY but I’m still afraid. What will this do to my skin, hair, etc. Also, the brochure says the medicine itself can lead to cancers and other crazy things. Well, that’s about it. Slainte!
If you have any advice or words of wisdom (hair, skin, sun, diet, anything), I’m eager to learn.
Sabra
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Hi Sabra, I really empathize with you in relation to taking hydroxycarbamide. I have to take 3 x 500 mg tablets every day. I think the effects vary from person to person. I do have issues with my skin being a lot drier than normal and slowly, but not noticeably losing a few more hairs in the shower than normal, but nothing major. We do have to keep out of the sun apparently and sometimes it can lead to fatigue and probably a few other things. I have been taking mine now for the past 4 years. George
I've been taking Hydroxy since December 2019 - 1x 500mg for 5 days and 2x 500mg on the remaining 2 days.
I held off taking it for two years, due to 'fear' of the possible side effects. My skin was a lot drier when I initially started taking it and I also had a constant sore mouth, it felt like I had burnt the roof of my mouth and tongue - both lasted for about 3 months - I used Difflam mouth rinse for the sore mouth and Childs Farm baby moisturiser for the dry skin (my grandson is prone to Eczema, and my daughter recommended it) I also felt really really fatigued.... it was an effort to keep my head upright and not sleep all day.
It was very strange, I woke up one morning feeling fresh and alive and both the sore mouth and dry skin had gone! Since that day I've experienced no issues with it.
I would advise that you take extra care of your skin when going out in the sun - sunscreen/hat etc. Keep yourself well hydrated and limit alcohol (I still enjoy a glass of wine of an evening, with no ill effects)
Kari. Thank you for your mssg. Yes, on the wine. Only one glass?! I’ve on Hydroxy 3 days-Nothing yet.
Good luck !
I have to wait a few more months to start
Let us know how it goes. I am a little anxious about starting but most people seem to tolerate it and the effects are beneficial One question l have is re sun block. My haematologist said l was less likely to have problems as my heritage is Middle Eastern so skin is darker. Can people still travel to hot climates if careful?
Hi. I too have been taking 500mg a day Hydroxy for a total of five years. I had a break of a year and did not notice much difference before or after. I have always kept the dose as low as possible but maintaining counts and balancing with Venisections.
If they caused me problems I could always stop taking them.....
Still living a 'normal' life, eating drinking and working in moderation..
Hello my lovely, I was put straight on Hydroxy when I was diagnosed with PV Jak2+ in 2015. I have had no problems at all with my hair. I have had blemishes that take a while to clear but these are a small price to pay compared to having a heart attack or stroke. Do drink plenty of fluid when taking them and not many people realise that if you are sexually active your partner must wear a condom. You must also not sit in the sun and wear a high factor sun cream when outside. The leaflet that comes with the tablets can be a bit harrowing but if you need it then you need it and, as I said, I have had no problems taking it And it has been a miracle getting my blood readings back to normal. Honestly, don’t over think it hun xx
Yes. I am definitely an over thinker. There is a lot to think about, and when I asked my hematologist about some things, she just laughed because I guess I sounded like the Internet. This is really good advice and kind advice for me.
Living alone with mom. She has Alzheimer’s so no romance for now in my future. I guess I’m poison anyway if people can’t touch me without wearing something. I enjoy walking but with the virus, riots and now the warmth of the sun, I need to sort out what kind of life remains of life.
I take hydroxy and have had no issue with it. I had a few mouth ulcers in the early days, but nothing else. Taking that first tablet was an issue for me too. I have been on it for four years now and am so grateful that it lowers my thrombotic risk - although it does not halt the disease!
My hair is not as thick as it was, but in my opinion, it was too thick before.
The general advice for starting treatment for ET is based on risk for thrombotic events. This criteria is age (60) with the Jak 2+ mutation, previous thrombotic events, and or being particularly symptomatic.
I was quite surprised to see that you’re CalR+ with platelets in the low 500s and more importantly, only 41! My platelets were in the low 500s too at diagnosis, but I was age 60 and Jak 2+, so fulfilled the criteria for beginning hydroxy treatment. As far as I’m aware, the CalR mutation doesn’t pose quite the same risk for thrombotic events as the Jak2 and MPL mutations.
Are you particularly symptomatic? That would be another reason for beginning treatment.
There is some evidence to suggest that the interferons work at a deeper molecular level and are the experts main choice of drug particularly for the younger MPN patients. I know cost can be an issue and I’m not sure where you live.
Because of your young age, it would be ideal at some point if you you could get a second opinion, preferably from a MPN expert.
I have been taking hydroxy for 15 years since I was first diagnosed and take 1000mgs per day. I get mouth ulcers occasionally but otherwise been fine and it has kept blood results where they should be. I’m 65 this year and was still working full time until shielding started and hoping to go back when it’s over. Good luck.
I started taking hydroxy in 2008 at age 52 after my ET jak2 diagnosis. My platelets were about 600 at the time. I was also very nervous about taking it. For me, the fatigue and the brain fog are the worst part. My hair has definitely thinned out but I try to live my life to the fullest, the best I can. Last year I progressed to MF. I’m still on hydroxy, 2/ day, and a new pill called fedratinib. Unfortunately, I can’t really advise you, except to say that I think my original hematologist was a little too aggressive in my treatment here in the US, because I’ve read on this site that in the UK, they don’t start you on chemo pills unless your platelets are much higher. So, it might not be a bad idea to get a second opinion by an mpn specialist.
I was on HU for 17 years with hardly any problems. Just some mouth ulcers which improved when the dose was adjusted. Initially I worried about its potential to cause other cancers, particularly leukaemia, but my haematologist at the time (very experienced) told me that although it's theoretically possible, he had never known it happen during his many years of practice. I have very pale skin so have always had to be careful in the sun so I can't comment on that aspect. I didn't lose any hair.
Thank you for the good word about not progressing to Leukemia. I guess that’s Dr. Google mentioning how bad things can get. What do you recommend for restricting sunlight. What do you do?
Just sunscreen and not exposing parts that wouldn't normally see the sun. I think it was easy for me as I've never been into sunbathing. Sorry, that's probably not much help!
I started on Hydroxycarbamide about 5 months ago (added to the low-dose Aspirin etc that I had already been taking (on and off) for nearly a year since diagnosis of ET in Feb 2019). My platelet count has certainly reduced and perhaps because of that (?) I am sometimes feeling a little better than in recent years. The most obvious side-effect so far is that I am losing hair at a faster rate than ever before - but that might be less of an issue for a much younger patient.
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