I would like some advise,. I have recently stop taking my medication as it was making me feel very unwell, I have not told my consultant and I can't get hold of him. I was taking 4 hydroxicarbamide daily. I have a telephone consultation come up in early May, and I see the consultant in Novemeber. Since not taking them I feel so much better in my self, I have not had a single illness since not taking them, I was getting cold after cold before. I have recently notice I have been getting more headache and my vision is poor, but no other real symptoms. I am due a blood test soon. My platlets sit round the 630 mark. I feel in myself they have increased cos of the headache. I want to start taking my med again but worried they are going to make me sick again. Any advise appreciated
Stop taking medication: I would like some advise... - MPN Voice
Stop taking medication
Sorry to hear your meds made you feel unwell but you must speak to your doctor as soon as possible - it's not good to stop taking medication without their advice - try talking to them about alternative meds that might suit you better...
We have an increased risk of a stroke or similar if our blood counts are high - that's why we are prescribed hydroxy. If your vision is poor and you have headaches then, as you say, that's probably a sign your blood counts are too high and your risk of stroke is increased. If you have a telephone call already booked with the hospital team within a few days and you tell them what the situation is they will hopefully help you sort things out asap....but my advice is not to hang about!
I agree with the others on this one stopping medication without advice is a bit worrying. I have a number at my hospital that I can phone anytime for advice think you should phone asap. As Andy says there could be alternatives for you to take. Good luck it's awful to feel so poorly and not know what to do. Let us know how you get on.
I am not a doctor but your dosage appears to be very high. You might want to ask about taking a much lower dosage and still be protected but not feel as bad.
I came off Hydroxy 18 mths ago and started using a Cannibinoid tincture (do some research) and a venesection on average every 3 mths. Your blood levels are very high tho and I think venesections will be required to get them back in line
I'm interested in coming off Hydroxy which I have been on for 3 years now for treating PV, varying in dosage from 1 to 2 x 500mg tablets daily depending on my white cell and platelet count. I'm concerned that I am using a dangerous synthetic drug over a long period of time ad that this could lead to cancer. I am trying to find out if there are any natural therapies for replacing the chemotherapy. My research on Cannabinoid tincture shows that this can be useful for relieving symptoms in PV but it only mentions relief of pain, which I am not experiencing now. Have you found that it also keeps your white cell and platelet count in check?
Sjdard , I can't stress enough how important it is to take your medication
It's 3 years since my diagnosis after having a TIA , not something to be taken lightly
you have to give your body time to adapt to the new increase , as your platelets are fairly high with no Meds you could be putting yourself in danger to stroke / heart attack's etc , please try to get intouch with you consultant again asap ,
Good luck , & take care
Pam x
Thanks for the replies, My med were not increased, I have been on 4 tabs daily for a long while. I know I shouldn't of stop taking them but I was feeling so unwell on them. I am going to try a phone the consultants secretary to see if I can been seen sooner. I have tried this but she never answers her phone or returns my call. I am going to try and take a reduced dose till I get seen, but I scared they are going to make me I'll again. Thanks again for the advise, I know you are all right.
Wise to talk to your doctor, but I did the same and came off medication and have felt really well since....platelets about 600 but staying round this, and sure due to good diet, lots of water and regular exercise. But haematologist is aware that I gave up and is monitoring me. Warmest wishes, Tinkerbell13
THEY make me feel ill and my right leg pains.
One person wrote see them as your friend, they keep you going.
The platelets will rise.
There is no easy answer, why not c ur gp.
Hi,
I totally understand your situation, I have ET and take 4 capsules of hydroxicarbamide daily, which also makes me feel nauseous and generally unwell. So I understand how difficult it can be at times to take something that makes your counts better but makes you feel worse. But by not taking them you leave yourself open to the risks associated with this illness and your really don't want that. I've had a pulmonary embolism and i'm lucky to be alive to tell the tale.
I suggest that when you have your telephone consultation, you let them know how your feeling and that you have stopped your meds, they might be able to escalate your November appointment, so you can change your meds to something else, that you tolerate better, or give you something else to alleviate some of the other symptoms. You might find it useful to have your annual flu jab if you feel like you kept getting colds, and maybe if you add some extra citrus to your diet it might help. I love all citrus fruit and find that I rarely get a cold.
One last thing, I don't know what time of day you take the medication, but many suggest taking it at night, so the symptoms are less severe in the day.
I hope you get it sorted x
So sorry to hear that you are unwell with your meds.When I was first diagnosed and given hydroxy for ET 10 years ago I also suffered from nausea .It was only when I was either in a car or on public transport even though I had never been sick before.My consultant gave me additional meds to stop the sickness until my body got use to the hydroxy which didn't take too long.I do remember that the first few months were the worst as you are getting use to the meds and also the diagnoses but it does get better I promise.x
I am really concerned at your post. Please phone your consultant immediately. You are putting yourself at increased risk of heart attack or stroke due to your high platelet count, much worse than a cold don't you think. Please do it today, you were put on hydroxy to help with this pesky condition and there are some side but believe me your euphoria over feeling better will be short lived and possibly fatal. So to have to throw the scary truth at you but you are playing with fire. The most disturbing post I have read on here.
Hi Sjdard, I am sorry to hear that you have been feeling so unwell, but you really must get advice from your haematologist immediately, it is not wise to stop taking your medication without their advice, if you are having problems reaching your haematologist then I would suggest that you speak to your GP and ask him/her to get in touch with your haematologist, you must discuss this with them and ask if there are any alternative medications that you can try. I would also stress to anyone thinking any taking alternative therapies to treat their MPNs that you must always get advice from your haematologist before taking any alternative therapies, they may not be suitable for you, many factors are taken into account when haematologists prescribe medication, your full medical history is looked at as well as your current blood levels. I hope this is resolved quickly for you, best wishes, Maz
Hi i agree with everyone , you need to speak to Doctor about an alternative or lower dosage all the best Holly
Hi
Most dangerous to suddenly stop taking medication. Do you have PV?
If you do then your blood may be getting thicker all the time and put you at risk of clotting, as everyone says.
I would suggest you change your haematologist. Perhaps Maz can help with one in your area who specialises in your MPN.
You should be seeing a consultant at least every 8 weeks.
I'm fine and still see mine every 5/6 weeks.
Please don't delay, seek immediate advice. You will be offered an alternative I'm sure.
Kind regards
Louise
Thanks again everybody who responded, I now realise I have been a bit stupid, and will start takings them again. Thanks again for all the advise.
Thank goodness, I have been worried about you all day xx
Aah thanks you, your very kind, I don't no many people with ET and my friends don't understand because I look so well at the moment they think there nothing wrong with me. I will keep you updated on how I get on if that ok, your support is appreciated.
Please do and I hope you get a quicker appt with your haemo.
sjdard, I applaud you! You took a chance, you asked around, you are applying the skills necessary to have a happy life! I regularly stop taking Hu when I get sick. I view the Hu as a kind of ankle-weights which prevent me from walking too quickly since, gee, I might fall down when I walk so fast (translates to having a stroke or a TIA), but when I need the speed (for example, to outrun an illness), I take them off and I'm fast (quick to recover).
When you pay attention to your body, your symptoms, pain, joy, emotional state... If you pay enough attention, you will agree with the correct advice you hear and disagree with the incorrect advice. More importantly, you will learn no matter what you do. This is why I am so happy that you took action on your own. We learn so much more, and so much more effectively when we try things on our own. Others are right to insist that you tread carefully and get professional advice, but as I explained to some Jehovas' Witnesses a couple days ago, if your conscience really doesn't agree with what an authority tells you (or you body doesn't agree, in the case of medicine and doctors), then you have to cut them off. We are ultimately each responsible for exactly one person, and that is our own selves.
One of the replies mentioned cannabinoid tincture and venesection. I didn't know that hemp seed oil (aka cannabinoid tincture) could affect platelet production and clotting, but it sounds like a good idea to start trying it a bit as a supplement. I'm going to go buy some right now!
Lastly, I think it's important to face the brutal reality that we will all eventually die. Some prefer to enjoy life as much as possible without any concern for its length, while others focus primarily on living as long as possible. Then there are all the choices in between. All these choices, when taken with awareness and intent, are beautiful and wonderful. What darkens my world is the peer pressure I see subconsciously or unconsciously influencing people to go against their inner self by choosing length of life over enjoyment, or choosing enjoyment over length of life. "Know thyself" is the best advice I ever got, and I've been working on that ever since.
I expect that some day, before I die, I will meet someone who knows about ET in a cultural way - people who don't seem to bleed, who die young from something very stroke-like, whose spleens grow oddly large - who also knows that his culture found a remedy for these symptoms - olive oil, strawberries, hemp seed oil, etc. - some combination, and probably a slightly or majorly different one for each of us (since every body is different!) will probably do a much better job for us than this Hydroxy stuff. Hydroxy works generally by making it difficult for our bone marrow to do its job. That doesn't seem wise to me, but the doctors accepts it as the final solution. I keep looking. So thanks to reliabletony for mentioning the hemp seed oil.
Dave.
Why not try half the dose ?? Rather than none at all ..to stop altogether is a shock to the system isn't it ?? Twinkly x
I stop HU on the advice of an Expert in the MPN field but my local Dr keep saying no he wants me on it. I was on it for three months had lots of side effects but then got really sick. Some pains went away immediately and some took weeks. I still feel very scared, unsure, nervous and have a hard time sleeping at night. should I listen to the expert and take a chance or the local and just do the medicine?. I'm going back to the expert and we will see, because there are so many difference of opinions between the experts, but I heard Dr V at MD Anderson in US say its the quality of life they do not want to make worse. So they weight the difference when it comes to medicine and what medicine is right for one might not be right for the other. Good luck
to you!
Here an update, I had my telephone consultation, told them I stop taking meds, said she will speak with the consultant and would get back to me. Have not heard anything yet hopefully soon. My platelet were 614, wbc 12.8. Rbc 13.7 and n were 10.8, these counts don't mean much to me but in general I feel quiet well. Only thing is the blurred vision which is there constantly and a few headache.
Glad you called your Doctor. You were on very high dose and your platelets only came down to 614?. or had you just started? I went to two experts in the US. One at Johns Hopkins and one at Georgetown in Washington DC. They know I still get headaches off and on, but I got headaches on the HU, they know about the blurred vision and the tingling in hands and feet, they looked at all my blood work and my BMB not just the platelets and mine are much higher then yours and I'm over 60. I thought I would take two out of three opinions, however the two out of three were no meds right now, just aspirin. That's does not mean later I won't be on meds again and if later comes sooner they will try other medicine. I work full time it's my lively hood and my medical insurance and my family who some I am supporting, cannot get on medicare until 65 and have to keep my wits. On the HU I was kinda loosing my wits and making tons of mistakes. I told my local Hematologist and he understood but wanted me to try again and use a higher dose. When I went off of HU my platelets were 543 but I had been on it for months.
I just went back to John Hopkins they run an MPN clinic and if you ever watch patient power video's you will see Dr Molinterno on there along with Dr Stein who is at Northwestern they studied under Dr Spivak but are all great Doctors and do a lot research on MPN's. You have Claire Harrison who I hear is fantastic so if you could see her that would be wonderful. So the Dr said the same thing not yet and he would use something else if it went over a million. My local said he might try angrylide but I think there is some scary stuff about that also. I do know here in the US there is a big talk about interferon 2a and 2b pegasy and many trials going on with it. Even saying it could put ET into remission so I am hoping to hop on that train. I think HU has the least side effects for most and I know people who are only 500mg and there platelets drop like crazy and they have no side effects. We are all different. Dr V at MD Anderson in the US said its the quality of life that they look at now. I do get very scared and if I had to I would go back on the HU and just try to deal with it. I see my local in two weeks and the expert is writing him a letter and we will try to put our heads together and come up with something better for me. Good luck to you and if you feel that miserable on HU, asked your consultant to try something else!
We are in a fascinating time with cutting edge research so I think we are fortunate!
Mickey
Thanks you for your reply, I'm seeing my gp tomorrow, hopefully I am going to ask Him to refer me to Claire Harrison and St Thomas in London, just don't feel confident with my current Hospital doctor. Thanks again
I have Covid 19 - I’ m worried about taking my Peg medication. 
Ruxinitlib
Feeling low and fed up
Taking hydroxycarbamide
