Hello all,
I have not been very active on the forum for the last month, being on vacation, but back to work tomorrow. By the way, I found a travel health insurance that will cover me as long as I am stable for 7 days prior to departure. That made my vacation. I found it on the internet by searching "high risk travel insurance".
During the last month I started hydroxyurea, first with 1 pill a day than 2 for a month. I had no side effectua. When I saw my hematologist for a follow up, platelets were down, but hematocrite and white blood cells continued upward. I am now on 3 pills a day, and have had a bad cold for the last 10 days, and had two episodes of cramps and diarrhea. Could all of this be side effects?
What do you think? My dr said to stop if the effects are unbearable and it is getting there.
Marie
Hi find the amount of tablets u can tolerate I am
Now taking 2 per day as that's what my body can put up with , with no side effects. I did go up to 17 a week but had to cut down , now my blood levels are all good I only eat red meat once a month and cut down on iron based vegetables and I've cut out alcohol so it all helps hope it helps you as well !
Thank you for your reply. It seems that, as soon, as I take more than 2 a day, I feel awful, is it a coincidence? The problem is that, at 2/day, it does not bring my numbers down, they are still going up. My haematologist wanted to put me on Jakavi right away, but the insurance refused coverage. I am thinking that I'll go back and fight for it again.
Try 2 a day mine came down eventually I didn't say till after 6 months was up naughty me!
We are all different ! I've had no side effects except getting exceptually hot , sometimes.
Hi Marie-Jos,
You need to watch your input of Hydroxy as if it is taken in larger doses over a long period it could introduce you to some very uncomfortable symptoms. After some 12 years of continuously taking this drug I suffered some quite severe side-effects, and eventually had to be taken off Hydroxy and prescribed Jakavi which I find is much more comfortable to use on a minimum dosage. Initially I tolerated Hydroxy well but as the dosage was increased (21 a week) it proved too much and the Haematologist arranged for me to receive Ruxolitinib (Jakavi in UK). Having taken this drug now for almost 3 years I feel decidedly better all round, whilst the haematologist stated that my blood tests had never been seen better for me. So consider your Hydroxy dosage with as low a dose as you can avail yourself of. Each patient has a personal level of Hydroxy. that they can tolerate so it is something for you to consider. Discuss what you would like to do with your Haematoligist as they need accurate information on your treatment, particularly if Jakavi is being considered as a treatment. I was never required to diet. My immune system suffered too and on one occasion I was suddenly taken to hospital by the consultant for some urgent observation and treatment after I had felt really unwell. When your immune system is unstable you can easily suffer from colds etc. that seem to linger on. Hope this will help.
Peter.
Thank you for your reply. If I understand, you stoped after 12 years because the large dose of 3 pills/day was not well tolerated. Did you have the same kind of side effects that I have? Cold, digestive problems?
Hi
I've been on this drug for almost 6 years and no side effects, I don't think.
It took a while to get the dose right.
2 tablets 3 days a week and 1 4 days a week.
If I feel a cold coming on I take manuka honey.
I haven't had a cold fir a year now.
Hope this helps.
Thank you for this information.
I used to suffer all sorts of problems. Colds that never seemed to go away, infections that needed constant treatment and would recur despite anti-biotic use. Everything seemed to take forever to clear. Certainly I felt cold night and day with digestive disturbances and some very unwelcome foot ulcers to which have only now just healed after 7 years of regular treatment. The side-effects of Hydroxycarbamide are fully documented and described in more detail in the prescription advice included in each drug packet. I was affected by other problems all of which were almost certainly from the prolonged usage of this drug which was accepted by the medics and a major reason for me to stop the usage and be prescribed Ruxolitinib instead. I am quite aware that others do not suffer such extreme effects which seem to arise from a maximum dosage taken over a lengthy period. The use of Ruxolitinib has been an absolute benefit with my blood levels at normal but I will need to continue this treatment as the symptoms could re-appear. I would say that each patient should assess their own situation and stay tuned in with their Haematologist.
Hi Pannej,
Good for you but if your immune system becomes damaged as is possible, then you will need to keep an eye on things.
Peter.
In what way, Di I. Red to keep an eye on things ?
Do you mean damaged because of my medication ?
Sorry
In what way do I need to keep an eye on things ?
Your immune system which protects you from infections, ailments (colds etc) and other medical problems particularly those where you may become cross infected from other people needs to be efficient. Medication and diseases can lower the protection of the immune system thereby allowing these ailments to gain access to the body,s system. Your white blood cells are the main factor of this defence. Nothing too complicated I guess. Your blood tests should indicate aany problems in this respect.
Yes of course !
As I said no problems or dude effects yet
Thank you
Hi you will probably find if u increase your dose slowly
, not heard of just going straight in to 3 a day . I think take one a day fir a month then increase slowly as I did then 10 a week
Fir another month then up to two a day. On this forum u will find lots of people can tolerate 2 a day for years some have taken it fir 12 to 15 years I've only been on 2 a day for two to three years now, I to tried 3 it upset my body balances felt sick etc so now on two I get no side effects listen to your body u will know when too much is too much go back to one I'm
No Doctor but u have to manage yourself ! Hope this helps xx
Hi marie-jos,
Hydroxycarbamide is not a drug that one should prescribe one-self. It is a very powerful medicine to be administered very carefully and under the supervision of a qualified doctor (haematologist). The mis-use of this drug can bring untold problems for it is also used in the treatment of other serious diseases including Leukaemia. I would advise you to make any drug dosage changes only with the consent of your specialist who will know of the dangers. I took Hydroxycarbamide in increasing dosages over a long period of years but strictly controlled by my specialist. Despite this I still suffered some quite severe symptoms that eventually required extra medical treatments. My Haematologist considered that I should no longer take this drug which was replaced by another more suiutable one.
Hidden problems can arise if the recognised dosages are not followed. Stay well.
Peter.
Hi,
Of course, I only follow my haematologist prescription: 1 pill/day for 1 week, 2/day for 1 month. Blood test show no amelioration, and even an increase of hematocrite so he puts me on 3/day. I see him in a week to see how it is going.
I'll keep you posted of next week's results
Marie
Hi Marie,
Thanks for your message. I was concerned that you were receiving advice to self-prescribe your own dosage of Hydroxycarbamide which is very unwise. I have already pointed out the pitfalls in doing this and know full well what my Haematologist would have to say if I went down this route. You seem very sensible but I would not wish anyone to follow this route of self-treatment and all advice must be from your specialist, as you are obviously aware. I wish you well and I hope your results are successful.
Peter.