Hydroxyurea

[shiela23]

who’s the one treated well with hydroxy??? Doesn’t this medication lots of side effects or effective treatment for ET??? Let me know please thank you so much…

[Trocken]

Works well for me with no real side effects!

[shiela23 in reply to Trocken]

Have you experience hair loss???

[Charliegirl551]

Hi I’ve been on hydroxy 5 years almost and not too bad at all. Main side effects are occasional skin rash, very occasionally sores in mouth. Altogether not bad at all. Hated taking it at first - but it’s now “routine.”

[shiela23 in reply to Charliegirl551]

How was your platelet count now? Does makes you hair loss this medication???

[Charliegirl551 in reply to shiela23]

My platelet count was900 when diagnosed it’s now generally around 335-425 so stable. I have noticed my hair is thinning but could be age- related too I’m 66. I manage to cycle 8-12 miles 3-4 times a week. 🥰

[shiela23 in reply to Charliegirl551]

What dosage do you take???

[Charliegirl551 in reply to shiela23]

1000 mg 3days 500 4 days

[Ebot]

Worked brilliantly for me! My numbers tumbled, far fewer symptoms, no side effects. It has very positive outcomes for the overwhelming majority of patients.

There are some people who don’t tolerate it - and no doubt they will share their experiences here. But please remember it is a well tried and tested drug that works well for nearly all people.

(I got myself in a real anxious state about starting drug intervention and put it off for a long time. With hindsight I realise all that angst was a complete waste of energy! I felt heaps better after starting treatment and was far less at risk from crazy high blood counts.)

[Lifam]

I've been on HU just over 2 years now, no major side effects so far and have been working well on me, my platelet counts have been within normal range ever since and have been maintaining well. Yes,HU itself has lots of side effects so do the other medicines, but everyone reacts to it differently, some very mild side effects can even be avoided once we study about it before we take the medicine.

[Uzza]

Hi,

I had a good and effective experience from Hydroxy my cell lines came down significantly. I did not suffer any side effects except ulcers. I am no longer on it. I guess everybody is different and you need to be closely monitored.

Cheers Uz

[Kari1961]

I've been taking it for nearly two years for PV - as with others, I resisted taking it for ages as I was very worried about possible side effects... I've had none, and it's worked excellently at bringing my bloods into the normal range.

I actually feel a lot better taking it than I did when I was having regular venesections.

[Mwalimu]

I have had HU for 11 years now. At first, had a sore mouth and still tend to have one but it is easily managed. I thank God for this medication, and hope to be able to go on using it for many more years

.

If you are worried about starting or using it, discuss your fears with an MPN specialist/nurse. You can also find out a lot about possible side effects from this site and info provided by MPN Voice but be aware many of us do well on it.

[Aldebaran25]

Hi Shiela23, I have been on HU for four months and was very nervous about taking this drug. Previously, my PV condition was managed quite well for two years just on aspirin and phlebotomy, however the situation evolved with a constantly above normal WBC count as well as a very bad form of dermatitis eventually diagnosed as skin sarcoidosis (another condition, considered uncommon in MPN patients). This plus the fact that I am turning 60 this year (which statistically makes one more at risk from cardiovascular events), prompted going on HU. So far I have been very pleasantly surprised, with no side effects. My WBCs count is slowly going down and the dermatitis is much better . I still have a lot to discover about the effect of HU on my health as it is early days. Also, I am considering giving peg-interferon a try, Each one of us is very different and it will be your own personal journey to find a good balance . What gives me confidence is that I am being followed by a good MPNs team , with specific knowledge and experience: that is my main recommendation (plus to keep asking questions and expanding your knowledge).

[beetle]

I was on HU for 17 years to keep my platelets under some sort of control. I initially had some nausea with it but that wore off as my body got used to it. There is no guarantee how any one individual will react to a specific medication but HU is generally relatively well tolerated I believe. I hope it goes well for you

[paradiastole]

Just to add to the positive comments. Hydroxycarbamide has been used for many years, for most people has minimal or no side-effects, and is very effective. My blood cell counts are all in the normal range less than a year after starting on it. Ignore the alarmism - as with any drug, you may have rare side-effects in which case talk to your doctor, but serious side-effects are rare.

[Oscarsboy]

Hi I am just coming into my second week of taking now and obviously lots of concerns re side effects but am coping so far. Just had them increased from three a week to daily but bearing in mind I had only been on them a week when they did another test, so not really a lot of time to allow for platelets to drop very much. Hope all goes well for you.

[shiela23 in reply to Oscarsboy]

What side effects do you experience??

[Oscarsboy in reply to shiela23]

Had a bit of nausea first week but that has now settled down. The roof of my mouth was a little sore/tender initially but that too is ok now and have also used ozermoprazole when needed. Other than that all ok and have just completed my second week on them.

[shiela23 in reply to Oscarsboy]

What dosage are you taking a day???

[Oscarsboy in reply to shiela23]

I take 1 x 500 mg tablet daily and thankfully side effects now all settled down well. Im still in the "adjusting" stage where it may be adjusted according to test results.

[shiela23 in reply to Oscarsboy]

What is platelet count now???

[Oscarsboy in reply to shiela23]

Hi Sheila23. We are in Portugal at the moment and I am having a test done here in our town tomorrow that will give me a full print out of all bloods I then have to email them to the Specialist Nurse at the hospital in the UK when they will decide on the result whether the medication stays the same or needs tweaking. My last one three weeks ago was 534 and had previously been at 550 in June. I am hopeful that it will have reduced down a bit more as I have felt much better 5 weeks in to the treatment. I will let you when I have my result tomorrow here.

[shiela23 in reply to Oscarsboy]

Thank you so much for your reply hopefully your results will be good soon once you get. I’m 2 weeks hydroxyurea taking 1 tablets but my heam called me 500mg is not enough it makes my platelets go up he decide to take 1000mg per day. Will figure out if this will drop my platelet count i was 385 last month but now 500… but hydroxyurea is giving lots of hair loss…

[Oscarsboy in reply to shiela23]

Oh Sheila some of this is so confusing isnt it. What is supposed to be taking them down is raising them . Pray the increase sorts it out but will let you know my reading when i get result.

[shiela23 in reply to Oscarsboy]

It is really confusing what is effective medication i this is my new treatment i was in interferon before but lots of side effects for me … let’s just hope and pray .. God is a good healer… 🙏🏻🙏🏻🙏🏻

[Oscarsboy in reply to Oscarsboy]

Hi Sheila just to let you know I have had my blood results from the test today and they are now 514 as opposed to 532 three weeks ago. There are a few changes to the other readings also, but nothing drastic. However now emailed the results across to the Specialist Nurse I am under at the hospital at home and will wait to hear whether I need to make any adjustments or not before we return from Portugal in three weeks.

[shiela23 in reply to Oscarsboy]

Good to hear from you… at least we know that it drops the number keep on going… keep me updated thanks

[ballycool]

Hi, I've been on HU for 11 years for ET and can honestly say I have no problems at all! My life is normal and I forget I have a blood cancer most of the time. Maybe I'm one of the lucky ones but I would not be here now if I hadn't been diagnosed and given HU as I was very ill at that time. Hope you find it good for you too. All the best

[shiela23 in reply to ballycool]

How often do you take it ? What dosage?

[ballycool in reply to shiela23]

I take 2x500 mg daily with 75mg aspirin. I have blood tests every 2 months. Platelets were 512 in July so I am quite stable thankfully. I do hope you will be ok on HU x

[shiela23 in reply to ballycool]

Thank you so much for replying… how old are you? What age you’re diagnosed ET??? Does HYDROXYUREA cause you hair loss????

[hunter5582]

You are going to hear a mix of answers to your question. Some people are able to tolerate hydroxyurea toxicity and benefit from it. Others are not. I would be one who did not. I am tolerating Pegasys quite well. Others cannot tolerate the Pegasys.

The bottom line is that all of the treatment options for ET have a risk/benefit profile. We each tolerate the options differently. If you do need cytoreduction then you will have to determine which of your options you prefer. HU and PEG are both first-line treatment options for ET. Some docs prefer one or the other, but what matters is what you prefer.

Here are some relevant links from the literature re. treating ET

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

Regarding hydroxyurea

drugs.com/monograph/hydroxy...

online.epocrates.com/drugs/...

ncbi.nlm.nih.gov/books/NBK5...

[CraftySpider]

Hi, I have been on 1000 mg daily HU for 18 years, dry skin, occasional nausea, but generally tolerated well.

[shiela23 in reply to CraftySpider]

How old are you??

[CraftySpider in reply to shiela23]

58…diagnosed at 40 with platelets over 1,200…as no symptoms, they said I could have already had it for 10 years without knowing.

[nightshadow]

Hi Shiela23,

I have ET and have been on Hydroxyurea since January this year.

HU has been very effective for me with minimal side effects. As you know others have had mild to severe side effects. Unfortunately there seems to be no way to know how you will respond until you take the medication. As the side effects are not permanent, I would say give it a go and see how you react, I am assuming that you have already spoken with your doctor about your fears.

I had talked to a friend who is a nurse and she was hesitant about it until she heard how often the doctors visits would be to find the correct dosage, I went once a week for several months, now I am down to every 2 months and will probably be moved to three if the next blood test goes well.

Another benefit to it is that if you are in the United States it is a very inexpensive medication to be on.

[shiela23 in reply to nightshadow]

How often do you take it???

[nightshadow in reply to shiela23]

500 mg/day for 5 days of the week and 1,000 for 2. I started on 500, which was not sufficient, went to 1000mg/7days/week and that was too much. I have been on the 500mg/day for 5days and 1,000 for 2 for about 2 months now and will find out in three weeks if I can stay on that or need to make an adjustment.

[blueseas45]

Hi shiela23,

I am 73 years old and have been on HU 500mg a day since May of 2021. I quit taking it for 20 days and my platelets jumped up to 809 from 509. I started taking it again 9 days ago. The biggest problem I have had with HU is horrible upset stomach as soon as I take it. I have gotten that to stop now by eat a bowl of cereal with milk about a half hour before taking the HU. I have never had any hair loss. Like everyone has said try it and it most likely will be ok for you. Wishing you all the best.