I was finally diagnosed after asking my dr‘s why my platelets stayed so high. Finally a new internal medicine doc sent me to a hemotologist/oncologist. +JAK2. I am taking my first Hydroxyurea capsule tonight.
Does any thing happen right away? Thanks
Hydroxyurea : I was finally diagnosed after asking... - MPN Voice
Hydroxyurea
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Plate
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I am a lucky one for now, knock on wood. Started taking 2 a day, platelets went down, no bad side affects except loss of appetite. Only lasted a month or 2. I remain side effect free after 18 months .
Oh, I did have a bit of hair loss but I think it was also from not eating much.
Hello and welcome to the forum. you will find support, information and understanding from others here.
The short answer to your question is - no, nothing is likely to happen right away when you take hydroxyurea. Any side effects you may encounter will likely take a while to show up. The more significant risks with hydroxyurea are associated with long-term use. Some people are able to tolerate HU and benefit from it. Others are not. I am one of the latter. HU did not work for me and I could not tolerate it. Fortunately, I have responded very well to the interferons (Pegasys, Besremi). We are all different in how we respond to the medications used to treat MPNs. It is a good thing to have options. You hematologist should have already reviewed your options with you. Hydroxyurea and Pegasys are regarded as first-line options. Anagrelide and Jakafi are possible second line options. Here is a bit about that.
mpnjournal.org/how-i-treat-...
legeforeningen.no/contentas...
Since you made the choice to initiate cytoreduction with HU, there is some information that is important to know. HU is a form a chemotherapy, an antimetabolite (AKA cytotoxin) that inhibits DNA activity in hematopoietic stem cells and other cells in your body. It is one of the more effective and faster acting cytoreductive agents. There are specific handling instructions to be aware of (see below) with the emphasis being to avoid exposing others to HU. Here is a bit more information you may find helpful.
oralchemoedsheets.com/sheet...
drugs.com/monograph/hydroxy...
online.epocrates.com/drugs/...
ethrombo.blogspot.com/2017/...
Wishing you all the best as you embark on this journey.
thank you, Hunter, I was wondering about if there was any contamination with others from taking Hydrea. The articles were very helpful 🌸
Glad the information was helpful. HU can be used safely providing proper handling procedures are followed. It seems not everyone is given these instructions. I certainly was not. That is why it is so important that we share information with each other. Better informing patients ensure the effective and safe use of their medications.
Thank you Hunter for your very informative answer.
I had strange dreams for first week . Proof it was caused by hydroxicarbamide
Is after stopping for a month , on starting meds again ,
dreams returned for a week!!!!
Do hope you respond well.
Please update us on how you are feeling and next blood tests.
Hi. No side effects whatsoever. Except I felt heaps better! As expected it took a while for my numbers to fall. Which they did - and then plateaued.
In the four or so years I’ve been on Hydroxy the dose has been adjusted a couple of times. My platelet numbers have now dropped from around 1700 pre Hydroxy to the mid 300s.
With summer on the way, don’t forget to keep covered up, hat on, sunscreen etc! Wishing you all the best.
You may experience an upset stomach right away or within 72 hours. What dosage are you taking? Everyone responds differently to this Rx, many tolerate it with little to few side effects. You'll know if its right for you. Good luck and keep us posted.
I’m Calr 1 mutation 65 yrs old . I take HU before bed with 1 /2 cup of water or more then brush your teeth right after and you will sleep through most of the side effects that are related to nausea and tiredness and mouth sores for some . I had one mouth sore about a week later and one rash on my arm . What I noticed was my nails immediately began to be brittle . All that has resolved since ( taking HU now for 2 and a half years ) the only thing now is the curly hair when wet . Not sure if you’re a female to worry about that, but I use a flat iron - it does wonders 😉 also if you get a mouth sore , I was told to use baking soda and water mixture . Good luck on your journey .
I have the brittle and discolored nails now. Hoping as they grow out it will disappear.
Are you taking the supplement Biotin? It helps with healthy hair and nails. I have curls and love them. I hope I get more!
No but I need to start
Hi
I've been taking Hydroxy for about 5 years now, originally 1x500 a day, then 2x 500. I know some people don't tolerate it very well, but I 've felt fine on it. My main problem was hair loss, which didn't start straight away. Everyone has different tolerances, I think.
I am taking Biotin, B 12, and B 1.
My sister who has a pHD in pharmacology recommended these, plus Collagen powder in my water.
I am anxious to see how they help.
I wondered if collagen powder was something we could take. I’m ready to pour some in my water.
It certainly could not hurt!
I also experienced hair loss within the first month of taking very limited doses. It was alarming to be in the shower and shampooing my hair and have clumps of hair come out in my hands! Fortunately, when I stopped taking HU, my hair returned to its normal thickness. HU also changed the texture...currier.
My nails also became brittle and haven't really recovered. For the mouth sores,( I had many), I drink aloe Vera juice, which also helped with any GI upsets.
My husband started on a low dose(once a day) in September and has had no side effects that we have noticed. His blood work is going in the right direction and his spleen shrunk to the point that his Hematologist/Oncologist had to really probe around to feel it! We are grateful and thankful!
Hi Plate,
I took HU 500mg/day for 6 months. No side effects except some hair loss in the first month, which stopped after that. All my counts (Hct, Platelets) came down slowly over a 4 month period, and then stabilized. My ET symotoms (brain fog, burning feet) also resolved. I switched to Pegasys 6 weeks ago (45mcg every other week) because I have several basal cell carcinomas, and was concerned about the increased risk of skin cancers in HU. So far no issues with Pegasys, but it’s too early to tell if it will be as effective as the HU.
Truly, if I didn’t have the skin cancer issues, I would stay on HU. It worked very well for me.
Good luck!
Lots of good comments. I'll add my experience. I'm using 2X500mg HU per day. Since it has a half-life of less than 4 hours in the body, it made the most sense to me to take one at night and one in the morning. To avoid mucocutaneous ulcers in the mouth, I suggest swallowing the capsule immediately with a lot of water; I've been successful with this. I did develop an itchy rash within 3-4 days of beginning HU. So, I stopped for 7 days, and the rash almost disappeared. I re-started and the rash came back but not nearly as strong, so I continued, as I wanted to get my platelet level down from its initial value of 1.2 million. Within 3 weeks, the rash was mostly gone. Since then (about 11 months), I have not suffered from symptoms. Well, maybe fatigue is there, but I certainly can't tell since my PMF already causes big-time fatigue.
Good luck on your course of treatment!
Lots of great informative responses here. I will only add my experience with HU - I've been on it now for almost 2 years - some itching but under control; biggest issue for me was due to my sensitive digestive tract - usually diarrhea. Was up to 3 - 500mg/day but could not tolerate so have been on 2/day for the last few months and tolerated well. I have found that, for me, one immediately after lunch and the other immediately after dinner works to keep things happy. The only other thing I can add, which has been stated often, is that it is important to drink a lot of water when taking this med. I've had no other side effects.
Wishing you the very best.
Sorry, but for me, the only thing that happened right away, and ever was side-effects- but that's just the way it goes sometimes.
Your mileage may vary.
Hello Plate. I am so sorry about delay in reply. On top of breaking shoulder end January, I broke my ankle last Thursday. Bit distracting!
I only remember the gradual effects of Hydroxycarbamide and, of course, everyone is different. You and I are of similar age, although I am not sure if that is relevant. I do not remember any instant effect, except of course, at that stage, review blood tests were taken every two weeks and platelet level did start to drop (this is the aim, of course). In my case, it did not drop quickly enough and my haematologist took the temporary measure of increasing dose. The result was mind-blowing fatigue and, unfortunately, migraines. I was prescribed large dose aspirin to deal with the migraine. Within two months, the platelet level dropped to 'very acceptable', and has remained there since June 2021. Also within two months, Hydroxycarbamide dose was dropped, and review interval increased to three months.
The initial side-effects were unpleasant. I will not pretend I enjoyed that part. As my platelet level had been overlooked by my GP for almost four years, the unfortunate fight to control platelet level may have been more intense than that experienced by most patients.
Almost two years after starting Hydroxycarbamide, I carry on popping the capsule daily and have stopped worrying about it.
Wish you all the best and hope you are not noticing anything in particular yet. May your platelet level be good when next checked
Statia (pronounced Staysha)
Hi,
Not to worry.
I've been taking one a day for over a year.
Don't even know I'm taking it, except that my counts are great.
Most patients tolerate this medicine very well.
Thanks for some good news! Is this something I will have to take forever do ET?
Dr. does not communicate well.
Just happened to catch this question. If you have ET age > 60/65 (or otherwise high risk) then the standard protocol would be to be on cytoreduction for the rest of your life. Some of the risks of HU that you were asking about are actually associated with long-term use. Your hematologist should have explained the risk/benefit profile of HU when he prescribed it. The doc should have also reviewed your other treatment options, particularly Pegasys and aspirin-ony. Informed consent only occurs when you know all of your options and the risks/benefits of each.
If this doctor does not communicate well. you might want to consider getting a second opinion or another doctor altogether. Consulting with a MPN Specialist is the best way to ensure optimal MPN care. Here are two lists just in case you have not seen them.
pvreporter.com/mpn-speciali...
All the best.
Thank you very much Hunter for your recommendations. I will definitely follow up.
It appears you know much then my current oncologist.
It is a bit concerning that you think I know more than your hematologist. I m just a guy with PV who has worked to learn about MPNs. I am certainly not a doctor, nor a hematologist. Unfortunately, many doctors know little about MPNs due to how rare they are. Most do not have the KSAs to provide optimal care. That is why consulting a MPN Specialist is so important. It does help to be more conversant with MPNs yourself. It helps you to advocate more effectively for yourself, including asking the right questions.
There are excellent resources to learn more. This recent series pf presentations are a great place to start, mpninfo.org/conferences/202...
All the best my friend.
Thank you once again for this wealth of information. I am already checking things out!
I may get through this after all. I look forward to all your information.
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