I have Polycythemia diagnosed March 2017. Platelets not extremely high 600. Haematologist put me on 500 mg Hydroxycarbamide. Platelets went down to 300. However side effects of Hydroxycarbamide were Horrendous. Breathlessness nausia light-headedness and the fatigue was so bad I didn't want to wake up. However haematologist said these symptoms had nothing to do with hydroxycarbamide or polycythemia and referred me back to my GP who disagreed with her. However I felt so ill and desperate I have stopped taking the hydroxycarbamide now into my Third week. All symptoms gone and I feel great. Best I've felt for ages. Did 40 miles on my bike yesterday!! My question is has anyone else taken this drastic action and what should I do now. How serious is it to stop taking the dreaded hydroxycarbamide?!!
Side effects of Hydroxycarbamide : I have... - MPN Voice
Side effects of Hydroxycarbamide
I is very dangerous what you are doing. I had my blood checked at least every year. My platelets were always 500 or a little more. My doctor did not had a problem if i made comments about it.
But in march 2017 i had a sinustthrombosis wihh a skull trepanation, I was very lucky that i did not die. i received the diagnosis of ET. Now i have a new synthetic skull , hemianopia and recently diagnosed with epilepsy. I take daily500 mg hydroxy . My disease is ubder control but much to late.
I started on hydroxy 14 months ago and suffered from fatigue, light headedness, brain fogs, irritability and anxiety. The side effects really affected me at first and I still suffer from them, albeit not all of the time. I have been lucky to be able to adapt my working patterns to accommodate the side effects and took the step of telling those nearest to me and my work colleagues how I was been affected. I have found that telling my family and work colleagues that I am having a bad day and apologising to those around me if I feel irritable has helped me to cope and reduced the anxiety to a certain extent. I would suggest that you talk things through with your Haematologist.
Good luck.
Ian
Hi Heather,
Well, you certainly proved that hydroxyurea can cause fatigue, breathlessness, light-headedness and nausea! I can tick some of those boxes myself!
It is quite important that you have your bloods regularly monitored to check what the effect of stopping Hydroxy has been. I know that some people have a "bounce back" of platelets after stopping medication, and it would be good to know what your ones are up to!
Your GP sounds like they are supportive of you, maybe tell them first, they might be able to write a letter to your haematologist to let them know how the Hydroxy has been affecting you. A good GP can be a wonderful help as they are used to dealing with actual people, sometimes specialists can be a bit too specialized, and just look at us as if we are a bunch of blood cells and numbers on a chart!
Is it possible to get a second opinion from a different Haematologist? Or from an MPN specialist? There may be other treatment options available.
Best Wishes,
Peter
Second opinion , A very good idea.I believe that a list of Drs is available from this site .
Good luck Lavender
If you’re pretty sure it’s the hydrea causing these symptoms you could ask your haematologist about alternative treatments!
You could be putting your health at risk by stopping the hydrea without medical supervision. You ask how serious it is to stop taking hydrea - well your platelets will increase very quickly putting you at increased risk of a thrombotic event, that is further increased if you are Jak2+ and aged over 60.
Be sensible and at least discuss your current situation with your haematologist.
Mary x
Hi everyone many thanks for your replies. In answer to your various questions :
1. I was told to stop it by my GP to prove that it was the Hydroxycarbamide causing my symptoms. He knew nothing about Polycythemia he had to Google it!!
2. Yes I am over 60
3. I am JAK2
4. I can't have a blood test until 13 November.
5. Haematologist said there was no alternative and it wasn't causing my problems.
I'm in a difficult situation.
Hi. I have MF, and I too had most unpleasant irritability, anger, brain fog and generally feeling awful when I took hydrea, and felt much better when I switched to ruxolitinib.
You might need a bmb to exclude MF eventually.
You might like to write a letter to your haem ( hard copy and email, copied to your GP) explaining that you find hydrea is causing intolerable side effects, and would like her to consider other options to keep your thrombosis risk under control. Like anticoagulants - rivaroxoban, etc.
Do let us know how it woks out.
Rachel
Your GP can give you a blood test.
There are alternatives.
I can’t compare like fir like because I’m ET CALR.
I had a stroke at 50
Diagnosed ET at 60
Also like you extremely breathless. After lung function tests diagnosed with hypoventalation syndrome.
I don’t want another stroke.
Hi
I think if you've got a blood form I'd suggest getting them done this week if you are 3 weeks without the hydroxy just to ensure your platelet levels haven't jumped up too high. If you have a form you should be able to drop in and get it done-don't worry about being told off by dr if done bit earlier than planned. Definitely agree with others may be worth considering second haem opinion if they don't offer an alternative treatment option.
Good luck and very impressed re your cycling !
Heidi
difficult situations, you unfortunately may have to be your own advocate and request another Consultant view .Try not to worry it is your life after all. Be brave it will be alright. It is tough to feel strong but communication is crucial. I have been there, did that and never looked back.
regards lavender
Just remembered!! When my doc started me on Hydroxyurea two years ago, he also gave me a prescription for Prochlorperazine 10 mg for nausea and vomiting, take every 6 hours!!!!. Totally freaked me out, thinking I'd have THAT effect. Filled the prescription at the time I started the Hydro, but THANKFULLY never needed it!! I was on 500 mg Hydro 5 x/week, now it's 3 x/week. Maybe you can inquire about that for your side effects. NO ONE should suffer taking a med, the conditions are bad enough w/o dealing with induced problems!
Hi. I have medication for the nausea but it made me feel worse. I have an appointment on the 16 November to see another GP so I will see what he suggests.
Hi Heather,
GPs are generally not familiar with MPN's or medication and treatment options. Your best bet maybe to have a chat to the new GP and request they liase with your haematologist re options or obtain a referral to a new haematologist. I have not found any GP over the past decade who has even heard of ET. I am glad you have started taking hydroxurea again. Even a reduced dose is better than stopping it without an alternative. Best wishes. I look forward hearing some good news re your situation on this wonderful forum. Elzbietta
Hi. Many thanks for your reply. I saw my new GP who surprisingly knew about MPNs and the medication. He wrote to my haematologist about the problems I am having with Hydroxycarbamide and she saw me last week. She certainly wasn't happy to receive a letter from my GP and offered me Anagrelide which I believe has worse side effects and also has contradictions with Prednisone which I also take. I have to ring her with my decision. I am going to see Pharmasist tomorrow to ask their advice.
Dear Heather
I have read your post a number of times and it is so impressive and motivating, it makes me smile when I read it. 40 miles on the bike! Good for you.
God Bless Anna ET Jak2 Hydrea
Many thanks for your kind thoughts. It's my cycling that keeps me going not always 40 miles!!
There are certainly alternatives, pegalated interferon (Pegasys) , angralide, Ruxolitinib etc., depending on diagnosis, also aspirin 75mg to help with clotting. There's a leaflet about treatments on MPN Voice website that it may be useful for you to take to your next appointment. Best wishes, F.
Think carefully about your actions. Yes it does seem that maybe that you reacted to hydroxicarbomide.
A repeat trail might confirm your thoughts. Maybe platelets of 300 are making you feel great. Are you high risk? Could a lower dose or a different med be your option?
Please discuss all with your Haemo.
Good luck
This doesn’t sound like you are getting the very best care. I’m not sure I would have enormous confidence in a GP -however kindly - telling me to come off a drug for a rare condition he had never heard of and had to Google! I’m also not convinced about a consultant who tells you the side effects you experienced had nothing to do with the drugs / disease. And I’m especially not convinced by a consultant who tells you there are no other drug options. Time for a second opinion? Please don’t leave yourself vulnerable to a thrombotic episode. It just isn’t worth it.
This is the most relevant response I've read to your initial post. MPNs are rare and complicated and specific to each individual.
A GP who has to Google your illness will not be able to understand your condition sufficiently or be able to guide you to a satisfactory method of controlling the disease, and it can
(for the most part) be controlled. I recommend you push to see a haemotologist.
All the best.
I have no experience of hydroxy, but just wanted to say that after attending a recent MPN voice forum and meeting some of our local haemotologists there are definitely heamotologist that may not be ‘specialists’ but certainly have a greater understanding and interest in MPN’s, I have decided to request that my care be transferred to one of them at a different hospital. This is perfectly acceptable within the nhs and something that happens routinely. Your GP may be able to help you find a heamotologist with good MPN knowledge or speak to MPN Voice, but your GP can refer you onto them. I wish you all the best and well done on the 40 miles, excercise and our mental health are equally as important as our blood results, your right to seek for a balance x
Hi Heather, I am in the same position as you. I began Hydroxy when Essential Thrombocythemia was diagnosed and took 500 mg per day for 1 month until I had to have 3 weeks of radiotherapy after breast cancer op. Oncologist told me to stop taking Hydroxy and haven't seen Haemo since. I finish radiotherapy at end of this week and will be sent a Haematology appointment soon. I am very seriously thinking of telling my Haematologist I do not want to go back onto Hydroxy and just take 75mg Aspirin daily to prevent any thrombotic events. I have read numerous articles about Hydroxycarbamide and as far as I can see it does lower platelets but can't see anything about it preventing clotting ,which Aspirin does. My feeling is , surely quality of life is the most important and to have side effects such as you have experienced is just not acceptable. I know everyone else has replied advising you not to stop or to try another drug........not sure! We can only make our own decisions in the end. Good luck! Regards Fran
Hi, it does seem you have an intolerance to hydroxy, I took it for 3 years and then developed ulcers on my feet, after various treatments I saw a dermatologist who said it was the hydroxy, my point is that neither the haematologist or GP said it was that! The dermatologist wrote to the haematologist and I was changed to Anagrelide. Apprently Hydroxy is the first choice of drug because it is the cheapest, Anagrelide is more platelet orientated (I have ET) but is more expensive, so cost may have something to do with being prescribed hydroxy. You do need to speak to your haematologist or at least the specialist nurse and discuss your medication, it is dangerous just to stop it, you could end up having a stroke because of blood clots.
Best wishes
Lizzie
Oh dear Heather - do not stop taking the Hydroxy until you find a suitable alternative - and FAST!!! Congrats on the 40 miles but you know what, you should be able to do that anyway with your illness...... get a replacement ASAP. Very best wishes and keep pedalling!!
Good morning Heather270240..
It is not a great idea to stop the Hydrea for the issues you had whichrequired you to be on this med, will come back stronger.
I had the same symptoms you had about the chemo fog and fatigue, so I ask my hematologist about this and we decided to start JAKAFI. I still have nausea, but she mentioned that I am sensitive to medications so this might be something I will always have to deal with. I wear a transdermal patch behind the ear and when an extra boost is needed, I take Dramamine. There is a new one out, that consists of ginger.
I also had asked my dr about doing hydration infusions, which really do help.
I have not had to do any phlebotomies for at least 6 months.
Why does it take so long to get into see your dr?
Keep us posted on how you will be moving forward .
Good luck
Sheryl
Many thanks to everyone for your useful information and best wishes. I will let you know the results of my bloods next Tuesday and the GP next Friday. After reading all your comments I decided to take your advice and recommence the Hydroxycarbamide. It's now been 3 days and the symptoms have returned big time!! The lightheadedness and breathlessness has been so bad I have had to stay at home. Can't wait to see if it can be changed.
Hi Heather, sorry to hear about all the side effects you had. Have you burnt out on phlebotomies? I was put on the Hydroxyurea (U.S.) 6 weeks ago. I have a minor side effect that I can deal with by adding little sweet potatoes to my diet. I don't want to be on the drug even without side effects and I am struggling with that. My doctor bumped up the dosage after 1 month. Originally 500 every day and now 500 every day and 1,000 on Monday, Wed. & Friday. I am afraid she will keep upping the dosage. My platelets are 181, but my crit is 45.3 and they want it under 42. I want to pursue a homeopathic route. I was managed with phlebotomies, until I started to show signs of anemia. I worry every day about this drug. Can your numbers be maintained another way?
Carolyn
Not what you're looking for?
You may also like...
hydroxycarbamide side effects
Hydroxycarbamide Side Effects
Side Effects from Hydroxycarbamide.
Why Take Hydroxycarbamide
Hydroxycarbamide side effects
Hydroxycarbamide and muscle pain
