Hi all
Just curious as to the highest amount of HU anyone takes.....I currently take 3 tabs a day (1500). This has been upped each time since I started on HU in December 2020 after 14 years on anagrelide whihc was suddenly stopped as consultant didnt like using anagrelide.
I have suffered side effects (all dismissed by consultant) and am dreading next telephone consultation (next week) in case he wants to up it again which I dont want to do.
Am ET triple negative.
Thanks all
I would ask to see a different consultant
They are there to support you not to make you feel you are being dismissed.
I changed mine and got one who listens , suggests , gives me time to think and make up my mind .
It’s so difficult to get the balance right isn’t it .
I was given this consultant with no explanation when the other 2 'disappeared'......I have no idea where they went....I was.told it was due to a new hospital being built and the department moving there but that isnt the case as the department is in the same place.....are you HU also?
Can you discuss with your gp? Or haematology department should have nurse to call . They are usually available and will listen to you . Write yourself some notes before speaking to someone so you don’t get ‘tongue tied ‘!!!
Iv got JAK 2 pos and at present only taking aspirin.trying to lower platelets but may well need to start chemo at some point.
Heam nurse doesnt reply to emails...GP refer me back to the hospital as they are the 'specialists'. I always have a list available when I know they will call but I dont get any answers as consultant gives me the most recent blood count, says what he wants me to do and ends call..its usually done and dusted in less than 2 minutes!! Its a farce!
Oh dear . I realise how lucky I am . What area do you live ?
Hi GK40
I feel your pain.
My haematologist ask me how I am then just says ODear which’s not helpful. He tells me my platelet level and what amount of Hydroxycarbamide to take then rings off.
I was diagnosed in September 2020 and haven’t seen anyone since.
I take 1000mg 5 days a week. When I don’t take the hydroxycarbamide I feel ill all my symptoms come back. Fatigue and pain in my extremities plus the odd headache.
I am also now having the battle of the covid vaccine I am trying to get the S antibody test which my GP says my Hematologist can arrange and my Hematologist says go to your GP.
It’s just isn’t helpful
Yvonne
Try to hook up with a MPN Specialist. Check the previous postings found below for a list and recommendations. Good luck.
PS. Really we need to take charge of our own care and be proactive ... even more so during this pandemic when healthcare is challenging to deliver.
Do you know of an MPN specialist in Ireland ... thank you
Here is a response I found from another member that should help
From Bruddery 4 years ago:
Welcome Sheila to this support site. I was diagnosed back in 2007 and consider myself lucky with the team that I have. When I wanted further information I e.mailed Eiblinn Conneally and asked for a private consultation. She phoned me back and spent ages going through things with me. I found her most informative. She worked with Professor Claire Harrison in London. She is based in James Hospital in Dublin. Don't know where abouts you are. She told me that there is another doctor now based in Cork who also worked
Thank you, I’m diagnosed 2020 and really just getting most of my information from this site... at moment see Haematologist ..thanks for replying
Why do you think you need to have a higher dose? Are your numbers not under control? I take three each day as well and still can’t get my platelets to the normal range ! I’m not sure how much higher of a dose we can take . I’m hoping to go on the Besremi when it is approved here in the USA. Good luck .
Only taking aspirin . Platelets not in range but feel ok so waiting to see if they they go higher
Good luck to you to
Stopped anaegelide after 14 years. Platelets went up to 2500. Started HU. Last test they were at 720 taking 3 tabs mon-fri and 2 sat and sun. Consultant upped to 3 tabs each day. Next blood test in 2 weeks so hoping for a drop....consultant wants them at 200-400. I really dont want to increase to any more than 3 a day so was curious as to what others too. X
Agree with the other comment. Get a new consultant. If you are already having side effects from the HU then raising the dose will just make the side effects worse. "Hydroxyurea is a highly toxic medication with a low therapeutic index." (American Society of Health System Pharmacists) Some people tolerate HU and benefit from it. Some people simply cannot tolerate it, myself included. You tolerated anagrelide for 14 years apparently without trouble. You are not tolerating HU and are worried the doc will want to up the dose again despite the adverse effects you are experiencing that the doc is dismissing. That is unacceptable quality of care.
To answer your dosing question, here is the information from ePocrates for MPNs.
*polycythemia vera
[500-1500 mg PO qd]
Info: titrate to control Hct and platelet count
*thrombocythemia, essential
[15 mg/kg/dose PO qd]
Info: titrate to control platelets and maintain WBC count
Dosing has to be titrated to control platelets and be balanced with toxicity. You are already experiencing toxicity, which would make increasing the dose problematic. Do note that per the NIH Toxnet database, signs of toxicity are common with HU at therapeutic doses.
I would note that it is more important to control symptoms than to achieve a set number of platelets. There is no correlation between platelet levels and risk of thrombosis at levels below 1 million. It is about reducing risk of thrombosis, microvascular events, hemorrhage and the secondary symptoms we experience like fatigue, inflammation, pruritis, etc. Platelet numbers do not tell the whole story of what is going on with ET.
Assertive patients receive higher quality care. Passive patients do not. You are the one in control of your treatment. It is your body - your choice what you put into it. It does not matter what this doctor prefers. It matters how your body reacts and what your preferences are. Doctors recommend. Patients decide. Doctors write orders, but they do not give them. Suggest you take control back where it belongs - with you.
This does not mean that we should engage in an adversarial relationship with our providers. It is supposed to be a supportive and respectful collaboration where the patient's voice and concerns are always heard. Suggest it is time to find a hematologist who will work this way with you.
Do bear in mind that most hematologists do not have the KSAs to provide optimal treatment for MPNs due to their rarity, It is very important to have a MPN Specialist involved in your care. It is also important to find a doc who listens to the patient. Here is a list of patient recommended docs with MPN expertise. mpnforum.com/list-hem./
All the best to you.
I ALWAYS love reading all of your responses. I learn from them and they validate my attitude towards healthcare as well. Thank you!
Thanks Hunter... so reassuring to read your comments
Amazing info. Yes. Now I see that my hu toxicity was real! Assertiveness and awareness, while remaining calm and knowledgeable are absolutely essential. Thanks so much for this excellent answer! I do hope that many read it!
Thanks hunter. I am assertive, but when you dont get chance to speak as they seem to want patients off the phone asap, ita difficult. I have called his secretary several times also and left messages when she doesnt answer, but no call back. Last time I called 3 weeks ago and she answered she told me not to call again and put the phone down on me!!
That is unacceptable. Sounds like it is time for "You are fired."
A few thoughts on this situation.
1. Tele-video sessions are far superior to telephone consults. There is no reason not to offer them - so insist on them. Every provider I see has stepped up their game on this since COVID. Not offering tele-video sessions is sub-standard care in these times.
2. Medical Admin staff are the face of the practice. Rudeness is not acceptable, particularly when the patient is struggling with something. Unacceptable behavior only can continue when it it tolerated. Fire a formal complaint with the chain-of-command.
3. If anagrelide worked better for you than HU then use anagrelide for cytoreduction. We are each different in how our MPNs present and different in how we react to the treatment options. It does not matter what the doc prefers. It matters how your body responds. It is your choice.
4. There are other options for treatment. PEGylated Interferon is another choice if you do not want to use anagrelide and HU is not tolerable.
5. Doctors can be replaced if you are not satisfied with their performance. It is not the practice nor the hospital who decides who your provider will be. It is your choice. I choose the practice I go to and the provider at the practice who will provide my services. I have heard folks in the UK speak to changing the hospital their care is based in when service delivery issues were not addressed. There is never a reason to tolerate unacceptable care.
6. There are excellent practices/hospitals and providers who deliver high quality compassionate care. That is where you want to receive care. Do whatever it takes to receive care in this fashion. It is what you deserve. It is what we all deserve. Sometimes we have to work to make it so. sometimes we have to object and complain when quality of care is inadequate. It is the only way things every improve, both for our own care and for the system of care.
As you might infer, I have pretty strong feelings about this topic. I have experienced both outstanding care and low quality care. I learned the hard way about how important it is to advocate for myself and hold providers to a high standard. I now have a wonderful treatment team that I trust and respect. It is what we all deserve, but have to work to make happen.
I hope you get your care needs straightened out and receive the care you deserve. All the best to you on this quest.
I started out on 1500 mg a day, for 2 months and have been able to get it down to 1000 a day because my platelets are at 250,000. I can't understand why your doc is discounting your side effects! Lots of us have them although I've been luckier than some. I've had fatigue, have lost almost half my hair and have had headaches on the 1500 dose.
Did your hair return when you lowered your dose?
Not yet, I've only been on HU for 6 months.
Hi I take 17 a week plus 9 anagrelide. Maybe a combination would suit you
I take 3 tablets for 4 days- 2 tablets for 3 days of hydroxy (for over 14years platelets go up and down so do the tablets, until they find the right level) and 1 tablet a day of Anagrelide.
Hopefully this is the right amount for me, platelets are down.
If you are not happy with your consultant, you can request a different one. I did.
I hope next phone call is a good one.
Take care.
I agree with the other comments.
It doesn’t matter what field your professional adviser is in , it can’t be right that the patient / client doesn’t feel they’re being heard and dreads appointments.
I’d suggest you email or even write to them by snail mail well in advance of the next consultation laying out your concerns , incl that you feel ignored and the specific questions you want answered.
You should then get answers from them point by point, within reason , and if you don’t get those it’s time to move on.
As a professional myself, in a different field altogether , my experience is that sometimes an unwillingness to answers specifics or spend time on a topic betrays inexperience or lack of knowledge in that specific area and a fear of that being “found out”.
So ,perhaps, in truth your consultant knows less about this area than they are willing to admit and it’s also possible that if there are staff changes and/or shortages the consultant is having to cover an area that isn’t their own first choice.
I’m hesitant to sound critical of the NHS as my own experience has been first class but they’re only human after all.
Good luck.
I am ET CALR. Platelets were at 1000 and I was put in 1500 Hydrea per day 5 months later and platelets went down to 200, but a lot of other numbers were affected as well. I finally took the advice of a lot of folks from here and other forums to see a mpn specialist. Fortunately I am 90 miles from the Cleveland Clinic and was able to see Dr. Gerds a week after calling my GP. He explained to me that i am very low risk, they look at 3 factors in regards to my risk of clotting, 1. Age, over 60 is high, 2. History of clotting, and 3. Mutation, my age is 49, low risk, no history clotting, low risk, and CALR mutation, low risk. He took me off hydrea immediately and said to monitor symptoms. If none, then no worries, just monitor blood every 3 months and a video call with him 2x per year, if I get symptoms we can try a low dose of hydrea ti find a sweet spot number where I have less symptoms. He indicated that in my case hydrea lowers platelets but not my risk, so no reason to take it. I have no idea what your numbers mean to you, but I can not reccomend enough seeing and mpn specialist, the breadth of knowledge he has compared to my hematologist is staggering, he is truly an expert in OUR field with OUR disease. Best of luck!
I take 4x 500mg
How do you find taking 4 a day?
I’ve been on this dose for so long that I’ve got used to it. I had to take early retirement in 2014 due to fatigue and foggy brain. I tried changing job for slightly less stress and responsibilities but still found being a clinical lead nurse specialist too demanding and challenging as I was not quite functioning on all cylinders. I also suffered depression at this time and found it difficult coming to terms with having a chronic illness. Since retirement I am under no pressure to commit to a routine and this means that the fatigue and brain fog no longer infringes on my day to day responsibilities. I can set my own pace and take on life challenges when I feel able to. As far as other side effects I do have bone pain in my legs and suffer from head sweats. On the up side my blood is very well controlled and all counts are within normal limits
Unfortunately at 41 I still have to work so have to manage symptoms, side effects and work. That with a 10 yr old so managing school life (home schooling for past year) after school activities etc means the fatigue is present anyway but with the added fatigue and symptoms of ET and side effects it's just 10x worse
Thanks everyone!! Great advice as always on here and nice to be able to talk about things and be listened to! Much appreciated! X
Sounds like it is time for a second opinion. Not listening to concerns about symptoms and not giving proper explanations for stopping previous treatment are not qualities in a doctor I admire or look for.
I do at the same dose 1500mg per day for a year. Doctor increased my doses sinced the platelet and HCT still up. i am experience some iching and allergic reation.
I agree with all the advice from everyone , especially Hunter. Hope you can manage to find another Consultant or MPN Specialist soon as your present one should be sacked.
You've had lots of good replies already, it sounds as if you could do with a new Haem or at least a consult with a MPN expert who can them set you on the correct path and write to your current Haem. At around 700 your platelets are probably fine unless they are causing you symptoms or other issues, most proper MPN Docs dont seem to bother about platelets under 1 million (some even more) unless they are causing symptoms or other problems , going on increasing HU (which is a toxic drug) just to see platelet number of 200-300 is not good and definatley time for a rethink.
This is why I love this forum!! Thank you everyone, much appreciated for taking the time to read and respond. X
I would question why the doc is not keen on keeping you on anagrelide - especially when it seemed to suit you. Side effects from medication really needs to be addressed -especially as it's a long-term drug. Otherwise - ask if there is anything you can take to counteract side-effects from HU. Good luck!
WOW. I’m on 500 every three days with E. T. Even some side effects with just that amount. Definitely see another doctor. No doctor should just dismiss health problems. Good luck. And stand up for yourself!!!
I’ve been on Hydroxycarbamide now for 15 years, now taking 1500 daily. I had a short break for three months in 2018 and took anegrelide instead. This led to a massive rise in my platelets and led to a heart attack with two stents fitted. I am quite concerned with the Hydroxy though and still think it is too high. I now has terrible problems with my skin and veins. I also have lots of other health problems. I have had ET etc since 1991 (30 years).
MorningSorry to hear that you are experiencing side effects.
I agree that 1500 that we are both on is a high dose and I'm not prepared to go any higher!
There are other options for ET, including PEGylated Interferon and Ruxolitinib. If you have a complex case these meds may not be options, but they side effect profile may be better than HU for your case. Best to consult with a MPN specialist on this, not a regular hematologist. Hope you have on on your care team.
I am following this stream with interest. I have PV and just come down from 4 Hydroxy to 3 a day due to side effects. Extreme fatigue hair loss dry poor skin and brittle nails. My consultant is suggesting going onto a combination of Hydroxy plus Ruxolitinib instead but am hesitant.
Is there anyone else on this combination?
I have the added complication of having CLL( leukaemia) on watch and wait and as consultant commented no one possibly has researched this. Mazcd is it possible to ask Prof Harrison her thoughts on this?
I hope you are already consulting with a MPN Specialist given what you describe. That would be absolutely vital to your well being. Just in case, here is a list.mpnforum.com/list-hem./
Dr. Harrison is on the list!
Yes thank you for your concern. I have been in contact with Professor Harrison thro Mazcd. I am interested to know from the patients view how and what effects could be. All information on Ruxolitinib as such a new drug for us here in Scotland.
I’ve been on anagrelide for 3.5 years with very little problems. Since my thrombos started jumping around a lot, they tried to add. 500mg HU. By the second day, I had strong neuro symptoms: Discoordination of hands, terrible forgetfulness, confusion. It was scary. I stopped it immediately and took an extra Anagrelid which helped. The dr didn’t like that. My doctor had also disappeared and the other two treated me like a number. I will soon be looking at another hospital.
I find we have to advocate for ourselves and not back down if we believe in something. I’m well studied, watch my symptoms with precision and don’t accept not being respected. I also know that once they see a strong patient, who asks many questions, they try using scare tactics: “you have a serious illness“, “you’re in danger of a stroke“, etc. Be prepared. Take time to think things over, weigh everything carefully and make a good educated decision as to what you believe is best for you and how you can achieve that. 🙂 always remain friendly but firm in reporting your observances.
AMEN!!!!
And never forget, the doctors work for you, not the other way around. On the care team, the patient is the Captain.
HU & breathlessness 
HU versus Anagrelide
HU dose adjustment
Anagrelide vs hydrea 
