Taking hydroxyurea

[Purplelady2]

My husband has been taking hydroxyurea for ET for 2 weeks now with no ill effects. His recent blood test showed that his platelets were slightly lowered but has been told to take two tablets every other day and one on the others.How long does it take for the medication to make any significant effect and what happens next if this does not occur? Many thanks for your help so far.

[Swede]

Hi, my doctor told be to expect about 4 weeks till Hydroxycarbamide made any difference. And, she was right! So, just take it easy and expect about...another 14 days or so.

[Lambo1]

I have been on hydroxyurea for seven years (I am 68). I started on a daily dose of 500 mgs daily, then reduced to every other day, then down to only three times a week. My platelets are very well controlled. I have had no side effects other than curler hair, and now hair thinning. So I have been lucky on this. I hope your husband is able to tolerate this as well.

[Threestreams in reply to Lambo1]

Followed your thread here … I hadn’t clicked that my wavy hair now maybe connected to my hydrox pills .. interesting

[Kari1961]

I've been taking Hydroxycarbamide for nearly 6 years. For me, it took about 6 weeks. Initially, I experienced a bit of dry skin and a sore mouth, these side effects soon went.

I've been taking 500mg Mon-Thurs and 1000mg Fri-Sun for about 3 years and my blood levels are controlled perfectly. I have PV.

[RietFontein]

Morning,I was put onto Hydrea for high platelets - lowered back to normal levels (<450 ) in about 2 months. Stayed constant in "normal range" now for 18 months. I use 1000mg HU per day (2tabs) except on Mondays and Fridays when I take only 1 tablet.

Good luck!

[Phantasia]

It's different for everyone. I was on it for 7 months and even after increasing the dose my platelets barely moved.In fact, my platelets reached their highest level while I was on the medication.

I think I must have been particularly unlucky turning out to be intolerant and resistant to HU.

I stopped taking it 3yrs ago and remain on daily aspirin only.

I certainly hope your husband has a good outcome on the medication. Most people do.

It can take time though so be patient.

Best of luck to you both.

[Hbm1]

I started on HU last May, taking 5 x 500 tablets a week, my platelets started to come down in a month but apparently not enough (although they were only just over 500 to start with) so tablets increased to one every day. Platelets have continued to come down nicely, (220 at last test) so medication has gradually been reduced. I’m now back to taking them 5 days a week. I’m 74 and have also found I have a Vit B12 deficiency and have had a couple of B12 jabs, this more than the hydroxy treatment has made such an improvement to my health. I think we’re all different as far as how quickly and effectively drugs work but I would stress that it’s worth getting B12 tested as it so often goes unnoticed. A deficiency can also be masked by the hydroxy so I’m led to believe. Also, other meds can interfere with the body’s ability to absorb B12.

[Contrarymary3 in reply to Hbm1]

Hi, I was told that we shouldn’t take B12 supplements with ET or PV. I believe I am B12 deficient but the consultant won’t follow it up as there’s nothing that can be done about it.

[Hbm1 in reply to Contrarymary3]

I would be inclined to get a second opinion here. My haematology team at the hospital are fine with me having B12 jabs, as is my GP. To say that the B12 has transformed my life is an understatement. Most of the symtoms I had put down to the E.T. have disappeared!! I have a suspicion that there is a link between some MPNs and B12 deficiencies. In fact I've requested a referral to an MPN specialist as I want to pursue this further. You are entitled to do this on the NHS using the 'second opinion' route. I', seeiong the MPN specialist in March and wilk report further but if you do want any further information about B12 please ask me as I've spent the last 5 months researching this!

[Contrarymary3 in reply to Hbm1]

Thank you for responding. Can I ask what your symptoms were? I’ve also been researching and pursuing but came up against a brick wall. I had my active B12 tested privately, and the results suggested further investigation needed. I broached the subject with my GP and consultant, which is when I was told no further tests could be done and no point doing it privately as I wouldn’t be able to take B12 supplements anyway.

[Hbm1 in reply to Contrarymary3]

I had a whole range of seemingly unrelated symtoms. Initially I went to the GP having lost almost a stone (without tryng), had hip and back pain, eyes were dry/sticky, feet were tingling. Eyes and feet almost always bad at the same time. The only thing that the hydroxy seemed to cure was the hip pain. In August (3 months after starting hydroxy) GP sent me to neurologist who diagnosed peripheral neupropathy and advised multi vitamins but didn't specify what. Then I started researching big time. Bought a book called "Could It Be B12?" by Sally Pacholok which is well worth a dip into. Platelets came down nicely but was plagued by feet eye problems and then hit by gastric problems. Returned to the book...again B12 a likely culprit. My chemo team arranged urgent appointment with GP. In brief, he diagnosed gastritis. I mentioned the B12 which was low but within the normal range. There and then he gave me an injection and the rest is history! Within two days I felt amazingly better and within a week or two I felt almost normal again. Please do get this checked out as I'm sure there is nothing that says you can't have B12 treatment with ET. Keep me posted.

Oh, and by the way, I've had three injections now and can probably have them every two months. I've also started to put on weight again which is a big positive.

[Contrarymary3 in reply to Hbm1]

Thank you. I have also lost weight, I have tingling sensations in my head and internal tremors. They’ve been going on for over two years now. I was diagnosed with ET (then later PV) around the same time. I know that untreated, B12 deficiency can cause last g damage but no one will take it seriously as the blood test done on NHS doesn’t test active B12. I asked for an MMA test but they said they could do it. I felt there was no point doing it privately as they wouldn’t do anything about the results.

How would I go about getting a second opinion?

[Hbm1 in reply to Contrarymary3]

Would it be a good idea for you to let me have your email as I have a lot of information about this and it might be good to compare on a more in depth basis?

[Contrarymary3 in reply to Hbm1]

I’m not sure how to do this without sharing my email publicly, which I’d rather not do.

[Hbm1 in reply to Contrarymary3]

I completely understand. I'll look into this. Meanwhile if you search on' NHS second opinion' you'll find a useful site called The Patients Association, there's a lot of information about this. My situtation is that I have a wonderful GP who is very co-operative. In addition I'm being treated for E.T. by the local hospital which is OK but they are overworked and understaffed and when I mention the B12 in connection with the E.T. they are not really interested, they just tell me to speak to my GP.

My tingling feet, dry eyes, tremors etc seemed to get worse after my hydroxy treatment started. At one point I thought I might have multiple sclerosis (hence the referral to a Neurologist). Being at the low end of the B12 blood test which shows as 'normal' is considered a grey area for most neurologists.

When I started on Hydroxy and aspirin, my GP also put me on Lansaprazole to counter any affects from the aspirin. This is called a proton Pump Inhibor and these medications interfere with B12 absorption so, even if your diet is good, the B12 won't be absorbed naturally. Also, if this is the case B12 tablets are unlikely to help either.

There are other methods of taking B12, the most notable one being 'sublingual' drops. These are placed under the tongue where apparently they go into your blood stream. (Available on Amazon). How effective these are versus the jabs is up for debate. Another point worth mentioning is that it's difficult to overdose on B12 as your body will simply get rid of what it doesn't need. However, going back to your case, I feel you need to press the point about B12 and if your GP doesn't even try you with a jab then you should request a second opinion.

I researched MPN consultants in the area and found one at The Christie Hospital in Manchester (Prof. Tim Somervaille). I asked my GP for a second opinion referral to him and he was more than happy to do so. I'm seeing him next month.

I would stress that this information is based purely on my own experience , symptoms etc but I think this forum is a wonderful resource and in fact it was on here that I first came across the link to B12 and, as I've said, I've never looked back.

[Contrarymary3 in reply to Hbm1]

Thank you. I’m getting increasingly frustrated with the lack of ‘joining the dots’ and am looking for a second opinion. I like my consultant, and he’s very thorough, but it’s one approach fits all and that doesn’t work. I would love to discuss further, if we can do so without broadcasting our email addresses that would be great. Not sure how though!

[Hbm1 in reply to Contrarymary3]

I'm looking at the Chat link. I'll see if I can send you something. It is apparently private.

[Contrarymary3 in reply to Hbm1]

Great, thanks. Can I ask - you mentioned tremors, is this something that happens frequently? I get internal tremors mainly at night.

[Hbm1 in reply to Contrarymary3]

I think tremors are difficult to describe. I've had a couple at night in the chest area but also I have this sort of twitchy feeling during the day sometimes. It was this that led me to multiple sclerosis! I've sent you a chat. Hopefully you'll get this.

[Plateletsgonewild in reply to Hbm1]

I have ET and my labs show high MCV out of the normal range (in addition of course to high platelets) unless I get a B12 shot once a week. First my doctor tried iron supplementing which did not work and then we tried sublingual B12 (methylB12 and hydroxyB12) but the only thing that lowered my MCV back into the normal range has been the shots. I would love to know more about the connection between B12 and MPN’s!

[Hbm1 in reply to Plateletsgonewild]

Interesting. I think there must be a connection and shall ask the MPN specialist when I see him next month and post my findings. My MCV blood result is always high and the Haematology team tells me that this is expected with the hydroxycarbamide. Are you taking this?

[Plateletsgonewild in reply to Hbm1]

No, not yet anyway. My platelets are at 679, but I also have clonal mast cell disease that causes bad reactions to medications. I have had some success with compounded drugs with safe fillers, but pretty sure you can’t compound hydroxycarbamide.

[Alan_P]

Hi. I started hydroxycarbamide in December 2024 with 500mg a day. Platelets were about 900. A month and a half later they were about 600. Increasing to a dose 1000 for 3 days and 500 for 4 days a week, they have fallen to 400 in about a month. I'm really pleased. Good luck!

[Nerjalover]

I was on this wonder drug for 25 years. It controlled my platelets well! Towards the end of the 25 years I became very itchy and my platelets started increasing. In the end they took me off it. I had a break for 5 years off it but by then my ET ( with JAK 2) has transgressed to PV- and my specialist had me on Peg Interferon and suggested I restarted taking just 1 Hydra tablet per day for 5 out of 7 days. This worked and my platelets were kept low.

Sadly I think my bloods may now be fibrotic- so am waiting for a bone marrow biopsy to see! I wouldn’t worry about the tablets though they were a godsend for me with little side effects .

[JOL13]

Took me a year - then stopped working and have just been put on Besremi but everyone is different😍

[Plavers]

I believe it is very variable and depends on how each of us responds to Hydroxy. There is no strict rule or timetable unfortunately. I’ve been on them for three years now with no problems and controlled levels but others have reacted very differently and of course there are alternatives. Best of luck and I hope your Husband will have good results with treatment.

[Purplelady2]

Thank you very much for your comments and kind wishes. He has another blood test in 2 weeks.