Do you think hydroxy ages you?
I’m on 6000mg a week and I feel I’ve aged so much the last couple of years.. My hair is so thin and doesn’t take the tint any more and I’ve put on weight.. I’m tired often.
Or is it just me aging, period!! Or the full moon affecting my mood today?😉
Hi I feel the same been on it a year my skin has really aged and I’m tired all the time and hair loss. I had ET for 2 years before diagnosis. I was tired but Iv aged a lot in a year since starting hydroxy
Hi Cokopops i am taking 1500 hydroxy per day a while now and yes it keeps my platelets down to 600 on last blood count,I am exhausted after sweeping the floor,going for a walk,have to take my time and have breaks or I will end up in bed,have discussed this with doc an she said the fatigue is something I have to live with,I am 54 and was a very active person prior to this, I would suggest you chat with your consultant about your concerns,hope they can help you
Hi Scouby,
1500 Hydroxyurea is a very heavy dose. I suspect you need a change of medication, especially if that dose only takes you down to 600. Suggest a consult with an MPN specialist.
I have ET JAK2, age 79, and have been taking 500 Hydroxyurea at different dosages since last year. Right now i take 500 mg only on Monday/Wednesday/Friday. Still it fatigues me, headaches, achy legs at times, and my face has small things appearing. I stay out of the sun completely. My platelets are currently 534.
Eileen
Hi mirror368,I am under the care of mpn specialist and it was her that said I needed to be on this dose, not given choice of diff meds,but I will ask on next visit.i too suffer on and off with achy legs and some night sweats. I have worked as a health care assistant for years but am out of work over a year due to fatigue, just not able anymore.thank you for replying it's good to hear from someone with similar symptoms
I have trouble tolerating 500 mg dose. Sad that you had to give up a job because of the fatigue. From what I have read there comes a time when you have to almost demand a change of medication because of symptoms.
Eileen
Hi Eileen
1500mgs I don’t think is that high a dose you know? I ve been taking 1000 mgs daily for 11 years. Touch wood no side effects apart from skin issues, but I live with those. I know folk who are on 4000 a day and quite expect my dose to go up one day. Whatever works for each person. I m 69. We have to trust our Mpn experts who know far more than we do although I m sure your concern is appreciated. Louise
You are too young to be suffering like that, you need to speak to your hematologist about trying something else!
Yes fatigue, headaches and and facial blemishes.
Thank you for your reply. I’m hoping the dosage will change next month after seeing the last results.
Hi, recently diagnosed ET JAK2+. BMB 24/10. Currently researching Hydroxy, Could you describe the facial blemishes you have please?
While HU does not speed up the aging process per se, many of the adverse effects can mimic the effects of aging. Hair thinning/loss, weight gain, fatigue, nail/skin atrophy are among the adverse effects that can look like aging. Given your current HU dose, it is very reasonable to think what you are experiencing could be an adverse effect rather than just aging.
Suggest you review your symptoms with your MPN care team. Perhaps they can suggest intervention or consider a different treatment option if that is what you wish to do.
All the best.
May I ask why you are taking it so young ? The threatening cut off is. 65
I was diagnosed age 38 now. 52 asprin only
Eat jak2
Platelets 550 / 650
What’s yours?
Hi I ve been on HU for 15 years since I was 54. I m fine. We mustn’t scare people you know but trust our haematologists - I m a patient of Prof Somervaille and trust him implicitly Louise
Hi I hope you don’t mind me asking but has your hair thinned a lot over 15 years on hydroxycarbemide? I’ve only been on 9 tablets a week for 18 months and am very concerned about my hair loss. Does this stabilise. Also concerned about future possible skin cancer. I do wear high factor sun screen every day but how do you cope with that concern? Hope you don’t mind my questions. I keep wondering about asking to change to peg but it’s side effects look scary. Thank you Irene
Hello Irene
Of course I don’t mind your questions!
I honestly think that Hydroxi can affect everyone differently.
My hair ( touch wood big time) seems to still be ok. It’s quite white but my maternal grandmother had snow white hair at 28! I don’t bother colouring it, have a very wide toothed brush, and use neals yard shampoo and conditioner about once a week.
HU has def affected my skin. Only small basil cell carcinomas which are nothing to worry about. I ve had 3 and simply had them removed. Small scars but what the heck I m nearly 70!
As I said I also have had recently about 25 actinic keratoses on my face - again small red pre cancerous spots which are easily treated with a searching cream called Efudix ( used for 30 days minimum) which burns them off. Itchy and uncomfortable for about the last 3 days. I also have a dozen on my chest. Not everyone gets these Irene and it’s probably 50/50 lots of sun exposure over the years ( we’re an outdoorsy lot in our family) and for me HU. I did ponder with my brill haematologist whether to swap to interferon but we both both decided - better the devil you know.
Obviously I m not that keen on occasionally looking as though I have the bubonic plague 😂 but I d rather stick with a drug I know than risk a change and side effects.
I m not being much help here, but my take on this is, our lives have changed probably permanently and we have to ease ourselves into a positive mind set.
My best advice would be to discuss with your haematologist if he/she is approachable and will take the time.
Louise xx
Hi. Yes I completely agree with what you are saying. I have been taking hydroxycarbamide for about 4 years now - currently on 1000mg Mon-Fri and 500mg weekends. I am 54 and I think visually I've aged at least 10-15 years in the past 4. So much so that people who I used to know just walk past me in the street, so I assume I am no longer recognisable as the person I once was. I used to have really nice skin, now its dry and cracked and really thin. I have sun spots even though I barely step outside after 10 am and never without being covered in factor 50 and a hat (I look like the invisible man). Weight gain, especially around the middle when I was super slim all through my life and so much hair loss that I am almost bald on top. I've lost most of my eyelashes too (but at least I hardly ever have to shave my legs!) And yes fatigue and tiredness when I used to be so active is really hard. I am so lucky in that I have a sit-down job and can work from home. I'm not in the least bit surprised you had to give up a demanding job.
As others have suggested there are other medications and I am slowly coming around to thinking about trying something else but it's also a bit of a scary step - sometimes better the devil you know...
It sounds like you’re really suffering on HU. Quality of life is extremely important!!! Please try to consult MPN specialist. Perhaps you can change to interferon or anagrelide. Do not be afraid of that change. I am almost done, making the change from anagrelide to Besremi. We went very slowly, because this takes a long time for some patience to work. I am so happy I did this and my quality of life has doubled. I am also not taking four pills a day, but rather one injection every second week. 😃
Thank you. Yes I am waiting to see an MPN specialist, really to get their view on whether I should consider a change, especially as my WCC is not controlled. I am nervous of the interferons, partly needle phobia but also because I have shown signs of other immune disorders such as sjorgens and lupus (although neither have actually been diagnosed). I think Hydroxy has definitely affected my skin and hair terribly but the fatigue, itching, inflammation and pain in and around my veins in my ankles, feet and hands have all been there prior to medication. I am glad you have found something that works for you.
Agree hair and nails /skin can be suffering with this drug . I too have thin hair . I wear a wig now . Gives me more confidence. Good luck with your journey
Hydroxy has caused both my skin and hair to become dry and my nails are brittle-I lost one toe nail recently and think another is looking suspiciously like its going to come off. Also I have faint dark lines on some of my nails
I am 72 and wonder how much if what I experience is due to getting older or to the Hydroxy
I too lost a toe nail and another one looks like it’s going.. Thanks for your reply. Best wishes
I lost my big toe toenail and it took at least 6 months or so to fully grow back. Several of my nails are discolored too. I think it’s the meds… I’m 63.
Hi everyone. I'm 74 years old. I,too, have gained weight while on this. I currently am on 1000mg daily with 1500mg every other day. I haven't lost hair on my head but noticed I don't have to shave my legs anymore. Also, very tired. I hadn't heard of the weight gain before (everyone writes about weight loss). I thought I was the only one. It's good to know I'm not the only one. Count is in the upper 600's. Does anyone also have blurry vision sometimes?
Yes! I've noticed a sharp decline in vision, especially long distance. And very blurry vision. Told it was due to aging. I'm 65. Taking 500mg daily for 3 years. My mother is 90 - no blurry visión. My sister is 68, no blurry vision. I experience similar side effects as others. No one convinces me it's not this highly toxic medication. Yes, it keeps my plalates down, but at what cost to rest of body.....
Hi jewelmaker,
I have noticed blurry vision for the past year on and off. I went to my optometrist this past week for my annual visit and mentioned it and he dilated my eyes and said everything looked fine and attributed the blurry vision to dry eyes. He suggested an eye drop with no preservatives when my eyes get blurry. But, as I sit here replying I have had to blink a few times to clear the blur:/ I am ET, Jak2+ diagnosed six years ago at age 58 and last platelets were 800k 2 months ago on 500mg 4days and 1000mg 3days. I was increased 2 months ago to 1000mg 7 days and platelets dropped to 400k in a months time. I am concerned about the toxicity of this drug:/ I was wondering if there are any eye doctors out there who specialize in changes to the eye with MPN’s?
Best Wishes,
Mbr8076
I too suffered all the same symptoms but eventually had to shift to peg interferon as the hydroxy didn’t control my blood counts (all three were out of control). The interferon has worked much better for me (with a potential recent hiatus) but many of the symptoms are exactly the same so my skin, hair, weight, nails and exhaustion are very much still apparent. Like one of the other commentators I am under Prof Somervaille and am very glad to be so as he is extremely helpful and listens carefully. I trust him as the expert and we agree treatment with full discussion around the pros and cons. We are each, as patients, very different and one of the difficult things with MPNs is that there are such a range of symptoms, reactions, blood counts etc and we all have varied background issues. That’s why talking it all through with the specialist is so important as they have to adjust every treatment to the individual concerned. So just keep talking to the consultant.
The only issues I have had is with some GPS who don’t understand the condition - but they are not experts in such things. I also think most MPN specialists work in teams and discuss patients and share concerns and advice. So just keep telling them your concerns.
I would echo the comments mentioning fatigue, toenail issues, dryness of skin and blemishes.
I have never quite managed to determine whether these phenomena are the result of the MPN (PV in my case) or the medication (low dose Aspirin and 5000mg hydroxy per week since 2018)... or both.
Very best wishes to you
I have ET and was on Hydroxyurea and Anagrelide the past eleven years. I talk to my MPN specialist this month on the 11th. I cold turkey both meds on August 12, 2023, and I do see the platelets climbing. I can't afford the Pegasus drug even with my insurance, and I hear it is no bed of roses either. It is one of the many, many cross-purposed drugs and is known for curing Hep C. Sounds like a heavy duty drug and rather frightening. I hated the effects of the two drugs I mentioned above. In limbo for now with high platelets. I do take 81 mg aspirin per day. My personal opinion is all drugs for ET are full of side effects.
Christy
Amen to that!
I just turned 80 and on 500 mg every third day for over 2 years so I can say that my age is doing its thing But I have noticed that besides the constant fatigue my skin has become thinner and easily rips and discolored. But I guess being 80 I’m happy I still have skin!!! I try not to start second guessing what’s causing what and take care of what the Lord has given me. If I was younger I would be more concerned about it I guess. Not words of wisdom for you but just rambling. It is what it is and I try to take care of myself and not get overly concerned about what I can’t do anything about. MPM isn’t going away so take care of yourself mentally and physically and try to find pleasure in the small things. The big things will eventually be taken care of. 😍😍
Do you mind me asking what your Platelet numbers are.. aand if Hydroxy 500 mgms every 3rd day keeps numbers down Thank you Kilmichael
Started at 500,000 dropped to 350 went back up to 450 then back down to current ….around 375-400. It oscillates between 375-450.
Thank you
It is easy to blame all of our aches and pains and symptoms on medication especially HU. How many people do you know who are the same age who also have all of the same symptoms that we all complain about. If I remember correctly, my parents had most of these symptoms such as thin skin, fatigue, weight gain, brittle nail and such but neither of them had an MPN. I am now mid 70's and have most of these same symptoms and my 78 year old sister also has them, she has no MPN. So who knows how much of these irritations are from the HU and how many are from HU or simply come with aging. I suspect a lot of these things are related to aging with a booster from the MPN and HU. Just my guess, I am no hematologist.
Like you mentioned, maybe it is the full moon, we did have one last night here in WV, quite beautiful. All I know is that my MPN specialist at Cleveland Clinic keeps telling me that HU is a very good drug and that there is no evidence that any other medication can make me live one day longer, thus far. I hope he is wrong on that and something comes along soon. For 28 months I have not yet had any issues taking HU.
Best to you always.
Hi
I take 500mg of HU Monday to Friday and 1000mg on Saturdays and Sundays. On the whole I’ve had no adverse reactions or side effects at all (I’ve been taking it for 12 months). Having said that my hair is definitely thinner but as I feel so well otherwise it seems a small price to pay. My hairdresser tells me that we should all massage our scalps regularly to help with hair loss.
Yes. I’m 66 and felt 80 on HU after being on it 18 months. Despite working with a fitness trainer 2x/wk, walking about 3 miles/day (have a dog) and cycling in warmer months, I was losing muscle. I started to notice that getting up off a comfort-height toilet was taking more “umpf” and I experienced increased shortness of breath with normal labs. Everyday life seemed harder. Hair thinning? You bet! I sought out an MPN who suggested Besremi but wanted me to go off HU for 2 weeks to see how I felt. I soon found myself with more energy than I’d had in a long time! I pressure washed my mother’s house, cleaned her windows, etc and still had energy to exercise. On Besremi now for 14 months and feeling great except when I’m getting close to my monthly injection. Just returned from hiking in the Dolomites with 14 kilos and up to 8,000 ft. I hope you can feel younger again!
I don’t see it any significant aging after 18 mos on 4500 HU week. 325 platelets. I’m 68 next month and do note that I’m gradually slowing down. I play golf 2-3x week and swim 75 minutes 2-3x week and look and feel a bit stronger than a year ago. I think it’s related to all the endorphins from swimming. I did get a basal cell during the first 6 months but I’ve had 2 others prior to my ET symptoms starting. I’ve changed my routine. I stay pretty covered up when outside and swim indoors. I have other occasional symptoms like priuritis, hot feet, that are associated with ET rather than Hydroxy. Bottom line us I don’t like putting poison in my body so I’m trying hard to stay fit, eat healthy, enjoy life and not worry unnecessarily. So far it’s working. Everyone’s body, reactions, mental state, and lifestyle is different.
I was only on it 12 weeks hair came out in handfuls skin dried every bone ached stomach problem from it. Personally it was a horrendous drug for me. I came off it & all these symptoms went. Moved onto Peg Interferon & changed back to normality. I cannot see how any chemotherapy drug long term can make anyone feel well but many on this site appear to have no problem. Our bodies all different but don’t just suffer try another option . Speak to an MPN they are the experts . Julia 👍
I was diagnosed with PV jak2 18 months ago and have taken hu almost from day one. Slight increase in dose age - now 500mcg Monday to Friday and 1000 Saturday and Sunday. When diagnosed I was age 72 and really very healthy except for an onset of chronic fatigue which resulted in my diagnosis thanks to my on the ball gp. Now, I have thinning hair big time, dry blotchy skin which bruises so easily and takes a long time to fade. My nails are so soft and split at the slightest pressure and the fatigue is still a problem when I stop being active so I try and pace my day. Long walk in the morning then normal daily chores etc for the day but the moment I stop, I’m done in. This has all happened since starting hu and I know because of my age that could have something to do with it. Just seems quite a coincidence. Unfortunately I don’t get to speak to my haematologist as for the last year I only get a call if my 3 monthly fbc is “off” if it’s okay my telephone consultation doesn’t happen. My only source of information is this forum which I’m very grateful for.
I have never actually met another person with PV ? Where are all you guys? 😊
Good luck to all.
Hi Cokopops, I’m not sure where you are in the world, I’m in UK and am under (thank goodness) the top MPN expert Prof Harrison. I’ve been on 1500mg of Hydroxy since I was 41, now 55, platelets were over 1600 when I started taking it, have never been below 500 and are currently at 563. I’ve definitely aged a lot in last few years, menopause, lots of life stress, difficult job (no longer!) etc etc. My hair, eyelashes and nail all affected and fatigue can be debilitating…it can be very, very depressing. But, I’m alive and I’m lucky enough to have a wonderful family and settled home-life. I think about this daily. Having read all the comments back to you I agree with the response Loubprv gives - ‘we mustn’t scare people’ - I think a few of the responses to you are potentially scary to read and I’ve never heard of Hydroxy prescribing being age related. I have spoken to Prof Harrison about this and she says it’s not a thing. I hope you find some help with your fatigue, it’s horrible. Best wishes 🌈
All chemicals age us; inside and out.
Anagrelide did a job on my skin, heart, BP, liver.
My job was learn to research how anagrelide did that and what I can do about it. I looked up nutritional deficiencies caused by anagrelide, and then I supplemented my deficits. I kept drilling my cardiologist for answers to why my heart was pounding. I then supported my heart, muscles and cells by taking acetyl l-carnitine, which helped me be stronger and more active so that my digestion, circulation, etc. Could be good! This also supported my skin as did a very good collagen supplement.
in order to reduce the damage from the very necessary chemical coming in, I reduced all other environmental chemicals from coming into my body, like food additives, soaps and creams, perfumes, cleaning agents, detergents, etc. This way, my body was strengthened and was able to cope better! 😃
Reducing the chemical load so that our bodies can continue repairing themselves on every level is a smart thing! 😉 but needs some effort.
Hope to have helped. Anag
My hair has gone really thin and life is a strain. I just want to sit and vegetate hence I’m always watching my weight.. I have to push myself all the time but we are getting older too. Don’t be hard on yourself.
I get my energy from 100mg CoQ10 in the morning and 500mg twice a day of Acetyl L-Carnitin. To get myself going with energy last year, I took 2x 500mg A-L-C. CoQ10 at 8am them ALC at 10am and 3pm. It helped me get going with cleaning my house and taking walks. I took the capsules immediately before movement and exercise. I was able to build up muscle within a few weeks and became stronger that Interzante gave me more energy as well. If necessary, one can take 1 g of ALC three times a day, but not after 6 pm, so that sleep is not affected. I feel alive again.
It’s also important to take a really good source of collagen which is found in every single cell of our body. This helps strengthen the cell walls, hair, ligaments organs, brain nails.
Hello I read your replies with great interest. Could you please tell me what collagen you take. Thank you Irene
I cook organic beef bones for 24 hours, simmering them and then filtering and putting in jars while piping hot. A little bit of salt wants to keep them fresh for months in the fridge. I add this to most of our foods, and we do only home cooking. Nothing prepared no industrial foods, no chemicals.
other than that my husband and I take Glow collagen which we get through Internet. I feel a lot better have better muscular tone and mobility and our skin is definitely younger. I have also researched that this type of collagen, which is extremely fine particles also helps the brain. I didn’t do this for beauty, but for my body but it’s also nice to have less wrinkles. 😉
Hydroxy & blurry vision
starting hydroxy as pathway to Rux
To hydroxy or not to hydroxy
Hydroxy and The Sun
