Side Effects from Hydroxycarbamide.

[Mazcd]

Do you have, or did have, any side effects whilst taking Hydroxycarbamide?

What were they and what did you do to help combat them?

[Gallery123]

I have been taking Hydroxycarbamide for almost four years. The main side effect appears to be tiredness and aching joints.

I guess I sleep more, I avoid very late nights, I do not touch alcohol and have taken up Yoga.

[Mazcd Partner MPNVoice in reply to Gallery123]

Thanks for replying, I found when I started the Hydroxycarbamide that I did have more fatigue but now I am on a regular dose it seems I just get the 'normal all part of having ET fatigue', but I do get aching joints, so that is really interesting.

[Gosh99]

I have been on Hydroxycarbamide for 9years,I get extremely tired and sleep does not always help, another side effect dry skin and hair and even accounting for 'normal' aging of skin I think it has affected my appearance. Also seem to more inclined to pick up minor infections. How much is medication and how much disorder though thats the debate. One good side effect I am actually thinner than I have been since my early 20's?? I gave up alcohol totally for first 5 yrs but now have about one glass of wine a week (a big one!), I try to walk daily a decent distance 3+ miles .

[Mazcd Partner MPNVoice in reply to Gosh99]

Thank you for replying, I agree, how much can you put down to having a MPD and how much the medication, this question is asked quite a lot at forums and there doesn't seem to be a definitive answer. I also find that walking helps when I feel tired, I'm not sure if it's actually doing something physical or the psychological effect of being outside and achieving a walk with my dog up a few hills.

[Whampam in reply to Mazcd]

I find exercise is a huge benefit. On the weeks I don't do anything I actually feel worse.

[billylipton in reply to Whampam]

You are right on the button (see my recent reply to question on exercise) I have found you have to exercise quite hard ie raise your heart rate. I have spoken to several experts (Ruben Mesa) espcially about this & they all agree it works but they dont know why, no research has been done. As you also say when you take a break you start to go downhill quickly , the main benefit is getting rid of the dreaded fatigue, not had that now for nearly 4 years.

[JackLina in reply to billylipton]

Well, I will look forward to that. I walked an hour a day minimum prior to this diagnosis to combat fatigue. I had to do it first thing in the morning or I would sink into inactivity and depression. Now I'm on the hydroxy, I'm keeping that up but find it a lot more difficult due to the pain in my joints and it doesn't help as much as it did. It does boost my mental state however. The dog seems to be walking less at present and I need an extra walk to make up for her recent laziness. Can't wait for these effects to subside. Been on it 17 days so far and know it!

[Dubmatix in reply to Whampam]

Totally agree, do half hour walk most lunchtimes and 20 mins to and from car but as others say the fitness level drops offf quickly and it takes time to build up again, can still manage a good 10 mile hike but longer is a lot harder than it used to be.

[ETphonehome]

I totally agree Whampam. Sometimes it can be difficult to motivate yourself to excercise but for me it's one of the best things for easing fatigue and just generally making you feel great.

Love getting out on my bike or going long walks with my crazy beagle.

[Hidden]

Yep fatigue is a real nuisance, because I never really know when it is going to happen. I had it before taking meds and now as well, so I think it is probably both. I get the 'wriggles' a lot, just like something is under my skin. Joint ache and feeling a bit disorientated are also problems for me. I try to walk at least 40mins a day and when I don't I can tell the difference.... I haven't given up alcohol!!! should I ?????

[Michael56 in reply to Hidden]

We seem to share the same but unless your condition relates to alcohol I would enjoy a drink, all in moderation, if you dont you will suffer!

[lucieboo in reply to Hidden]

Oh, wow! Someone else with the wriggles! Early days I had ghastly aquagenic pruritis, but not now. The problem is, not sleeping when I get the wriggles, so I take Atarax then, the only antihistamine that works, but it does rather knock me out. Walking daily marvellous. Don't give up alcohol, we deserve some treats!

[JackLina in reply to lucieboo]

I find if I have alcohol, even when I have had more than the recommended amount of water in the day, I get a headache. Not a mild one either so it's a rare treat now. No intention of stopping altogether however.

[lucieboo in reply to Hidden]

The wriggles: was a big bother for me at night, took Atarax but only half a tablet and I would just go into a deep sleep after half an hour. However, it made me a bit dopey in the mornings, so now I take an infusion with passion flower and it is really good. I may need to go back to Atarax in the Winter. No, don't give up alcohol, we all need something, but in moderation, I like Sangria and shandy, I don't drink spirits except for a single malt (Laphroaig) if I am cold and miserable. A strange thing I have noticed: I don't get colds and 'flu, a nice bonus!

[Jo_L]

My hydroxycarbamide dose has recently been increased to 1.5g 4 times a week and 1g 3 times a week. Earlier on this year, when I was on a slightly lower dose than this, I was getting a lot of mouth ulcers (in some very odd parts of my mouth, like on the side of my tongue and right at the back of my mouth) and the skin on the soles of my feet thinned to the extent that it was literally wearing out. The hydroxycarmide was reduced a little and the mouth ulcers disappeared and teh skin on my feet recovered to some extent. Then the dose had to be inceased because my platelet count started to climb quite steeply. Since then, both the mouth ulcers and the thin skin are starting to re-appear and I am thinking the hydroxycarbamide might well be responsible.

My next appointment with the haematologist is on 19th July and I will discuss this with her then but I was wondering if anyone else had any problems like this?

[jane13 in reply to Jo_L]

I had the mouth alcers but now take a daily mouth wash which stops these - my dentist recommended several!

[Jo_L in reply to jane13]

What mouth wash do you use? Is it an over the counter one, or do you need to get it on prescription?

[jane13 in reply to Jo_L]

i use corsodyl daily, over the counter jane

[Jo_L in reply to jane13]

I'll get some of that next time I'm out shopping and see if it helps. Thanks for your help,

Jo

[bruddery in reply to Jo_L]

Hi, I too have had my hydroxy increased over the last couple of years, suffered dreadful mouth ulcers, just like you the side of the tongue and the bottom of the mouth, the tongue swelled also. I was referrred by my haematologist to the dental hospital as mouth washes were not any good, and bonjella etc. didn't work either. I was given a steroid tablet to use as a mouth wash and this seemed to work ok but once they increased the hydroxy again, they returned. I posed the question a week ago to my haematologist whether the ulceration could be occuring elsewhere in the body (I have previously had stomach bleeds through medication) and was told this is quite possible at this stage. They are now saying if platelets etc. rise again they will put me on Angralide - but this won't cover all and I will have to have regular veinousects, this will deplete my already low iron, and to counteract this I will have to have iron, which in turn will increase the platelets. Anyone else have the same difficulties? I was diagnosed in 2007 and in all that time have rarely maintained low platelets. I'm based in Southern Ireland - anyone local?

[Jo_L in reply to bruddery]

I've been given steroid tablets to place on the ulcers but was advised not to use them unless any of the ulcers were particularly bad.

I still need to have fairly regular venesections in spite of the hydroxycarbamide because my haematocrit keeps on rising. My iron levels are low but no-one has suggested that I need to have supplements - my haematologist has actually sent a note to my GP saying that I am on no account to be given iron supplements! I do eat a fair amount of red meat and dark green veg and, unless I am given a compelling reason, have no intention of stopping.

I'm in Cornwall which is probably similar in terms of climate but is certainly not local to you.

Jo

[bruddery in reply to Jo_L]

Thanks for the reply. I don't actually know anyone over here with MPD it's great to find a site to get information and share things. I have frequently had venousects. Have been put on iron previously but then had even more problems. I regularly have the old itch syndrome too but Piriton and bread soda baths (!!) actually works well. I take a host of other meds in relation to this including Aspirin, Allopurinol, Zoton, and Atorvastatin - could be worse, and I'm sure there are always people worse than myself!! I consider I'm lucky and I do have a good haematology team and an excellent g.p. team. Thanks

[bruddery in reply to bruddery]

PS I dont place the steroid tablets on ulcers but was given instruction to place them into 5mls water and use as mouth wash holding it in mouth for 5 minutes (6 times a day) or 2 tablets 3 times a day - it works, and like you only use when I feel them coming on. Fortunately dental hospital give great support too

[JackLina in reply to bruddery]

I used to use Rinstead pastilles for mouth ulcers but cannot find it anywhere. boots do their own and when I had my first drug related mouth ulcer (under the back underside of my tongue) yesterday, I had one of those and it went straight away. No sig of it today, so maybe give that a try.

[jane13]

I am very interested about the achey joints - I certainly have this quite badly - but the medics all say it's nothing to do with MPD or the drugs. Do we have a clinical/medical person who could advise?

[JackLina in reply to jane13]

My specialist nurse said the same. I disagree however because there are too many people on here who are suffering the same symptom. I did read that hydroxy reacts negatively to any rheumatic or arthritic problems we may already have and I think that would make sense as all mine have increased.

[geordie]

I have the problem with fatigue and aching joints plus restless legs when very fatigued again the medics say nothing to do with the drugs!

[Hidden]

Last year I had a real problem with my heals. I wore trainers that weren't new and stupidly didn't stop walking when they started to rub. My skin just rubbed away, as it is much thinner now, it didn't blister but was just red raw. I needed daily treatment from our local pharmacy. I am now very careful if anything seems to rub. I also have spidery capilleries around my ankles, bad circulation!!

[ballycool]

I was diagnosed with ET in August 2010 and since then have been on Hydroxycarbamide. So far I have not had any of the symptoms expressed in the above messages other than the fatigue which is annoying to say the least. I have tried to exercise, walking was a great passion of mine before my diagnosis but have been unable to keep up any regular walking since then. I will be trying harder now after reading all your comments about the benefits of exercising. Hope you all keep well and manage to deal with your side effects so that you have a better quality of life.

[Bry342]

My husband was diagnosed with PV in 2008. Started on hydroxy 3 weeks later and the fatigue has been the most life effecting symptom so far. Was discharged from the armed forces as was too exhausted to work. Now is at home all day but tries to get out with the dogs most days. We have to plan carefully any night's out or even a day in town, as he will be so tired the following day. Don't think the docs take fatigue seriously enough. And the government don't recognise the condition or meds as serious.

[Jo_L in reply to Bry342]

If you are in England, did you know that your husband is entitled to free prescriptions? It doesn't make anything go away but it does relieve the financial pressure a little.

[KevinJH in reply to Jo_L]

That's interesting Jo_L - with my PV I'm having to pay the monthly direct debit amount for all my prescriptions. Whilst I don't mind paying it, it would have been nice if my gp had advised me of it.

Note to self: must have a chat with the doc next time I see him......

[SharkeyJoanie]

Going to Qigong which is a healing form of Tai-chi and also seeing Chinese doctor who is very helpful, tells me what foods thin the blood.

Side effects I have had are sick in morning, mouth ulcers and spots on my face.

Managed to reduce meds to 1 a day.

Also starting to take supplements - been told by friend that vitamin E thins the blood.

[JackLina in reply to SharkeyJoanie]

Yes, vitamin E does thin the blood and have brilliant effects on the skin but I was told that supplements should be checked out whilst on this drug. Prior to this, I took vit. E, CoEnzymeQ10, Gamolenic acid and Flax seed oil (veg. alternative to fish oils). I was told to stop however because E and Gamolenic acid also thin the blood too much. since I've been on it I have taken no supplements at all and would love to be able to. If you can find out any more, I would be happy to learn tht it's OK to startagain.

[Gallery123]

Interesting to see what foods etc might assist. I agree re mouth ulcers and spots on the tongue also being more susceptible to minor infections. Un fortunately, constipation is another problem so I am careful with my diet, lots of fruit and veg. In a way these problems are not side effects but effects cos they are central to how we have to manage.

[JackLina in reply to Gallery123]

The constipation is definitely a problem if I don't drink enough water or if I have an antihistamine as a sleep aid. I have a kiwi every evening to combat this and they work well but with the sleep aid, they do nothing to help.

[Millions]

I was diagnosed with ET about a year and a half ago I am on hydroxy since then I take 1 one day and 2the next I do get fatigue and joint pains but what worrys me is that I have read in the Internet it's a type of blood cancer although my haematoligist say it's not does anyone have any views on this oh and I take an aspirin every day as well hope everyone keeps well

[JackLina in reply to Millions]

If you get a copy of the booklet 'bloodwise' you will see that it was reclassified as such in 2008 by the World Health Organisation. I wouldn't be too worried because what Jo L is stating below is fact. If you think about it, if your body is producing something that is not required by the body; that something is considered a cancer. Don't need to be malignant to be considered so.

[JackLina in reply to Millions]

I can't believe i just replied to mail submitted 6 years ago. what a Wally!

[Jo_L]

Millions, try not to worry about the cancer aspect.

All the MPDs (myeloproliferative disorders) are classified as blood cancers but they don't cause you to develop secondary cancers in the way that more malignant cancers would. Here is the address of a page in MPD Voice which explains it much better than I ever could:

mpdvoice.org.uk/i-am/newly-...

I take the view that ET and PV are technically cancers in that they cause uncontrolled cell division and growth but I wouldn't tell people that I have cancer and I don't, in a day-to-day way, think of myself as having it. Anyway, I find it's difficult enough when you have to explain your medication and treatment to them!

The classification as a cancer (by the WHO) is relatively new and this is what causes you to be entitled to a non-means-tested exemption from prescription charges in the UK. You can find out more about claiming your exemption on the MPD Voice website.

I hope that I have helped rather than made things worse for you......

Jo

[Millions]

Hi jo thanks for putting my mind at rest about this worry are you from the uk I am so keep in touch thanks again for your reinsurance keep well and keep in touch xxx

[Jo_L in reply to Millions]

Yes, I am from the UK. I live in North Cornwall and it's very wet, grey and dismal here today.......

Jo

[Millions]

Yes Cornwall is a lovely place I've been there I'm from hillsborough in N Ireland it's good to be able to speak to someone about how they feel and cope. How long have you been on hydroxy now is it ET you have the whole cancer thing really scared me I read the website u sent and it has helped thanks again take care!

[Jo_L in reply to Millions]

I've been to Northern ireland a couple of times and thought that it was very similar to Cornwall in many ways - possibly due to the climate?

I have Polycythaemia and ET and I also have MS (guess I must drawn a short straw somewhere!). I've been on the hydroxy since October 2010 and, in spite of that, still need to have fairly regular venesections to keep my haematocrit down to an accceptable level.

I get very tired very quickly and so my world has 'shrunk' - I now work from home (mostly) and have a very limited social life. Luckily, my boyfriend prefers staying in to going out so we are both very happy with the time we spend together.

On the whole I would say I am happy with my life but I do tend to get nervous about my hospital visits and blood test results. My next hospital visit is next Thursday and I am a bit apprehensive as to whether my platelet levels will have settled down a bit because they have been climbing over the last couple of months. I already know that I'm almost certain to need a venesection because my haematocrit had crept back up to 46 when I had my last blood test.

Jo

[ourlife]

I was on Hydrea for 11 years - fatigue has always been my worst symptom - as many of you have said, my Dr would not relate it to my ET or the drugs - and others around you don't realise just how exhausted you feel - especially as quite a few of us are quite young & healthy looking to the outside world ! I had many side effects on Hydrea - scaly feet (which has since gone!) - joint ache - pins & needles - night sweats - trouble with orientation (& concentration) - low immunity to any bug going ! (the first few years) - loss of body hair (mainly arms/legs) - lots of stomach trouble/sometimes my meal could go straight through me before I had finished eating ! - pigmentation growth on my eyelid (like a mole) which had to be cut off - nausea most mornings. In a second opinion consultation I was switched to Anagrelide which reduced or stopped most of these side effects but the fatigue was worse. I was glad to have a break from Hydrea as I was worried that if I needed it later on I might have become immune to it, or if I took it too long term it could cause other problems. My blood counts (and dose) were creeping up at the end anyway.

[StreetPastor in reply to ourlife]

How long were you on Anagrelide for?

[Millions]

Jo sorry Im not sure if you got my message yesterday you have had it really rough good to hear your dealing with it so well you sure but my mind at rest about the blood cancer thing cause I was thinking about it all the time thanks again I read the mpd thing you told me about all the best for your appointment. Next Thursday hope you don't have to get the venesection and all goes well for you. xxx

[Jo_L in reply to Millions]

I've just checked my inbox and there's nothing there.

Thanks for the good wishes - I'm sure I'll be fine but I guess we all start thinking about our conditions in the run-up to hospital appointments......

Jo x

[Millions]

I'm new on this and I'm not sure way it says delete on my messages and on yours it says report I'm not a computer wiss kid as I'm sure you've noticed xx

[ourlife in reply to Millions]

Hi Millions, I am not 100% sure but on another chat site I belong to, you have the chance to delete/withdraw your own posts - although this is often is to the detriment of the rest of the messages in that subject as they sometimes lose their 'flow' - and the 'report' tag on other peoples posts is so that you can report them to the Moderator if they are offensive in any way

[marianela]

Marianela

I hear of lots of you having "venesections" - I have never had this, could someone tell me what it is please.

[Jo_L in reply to marianela]

A venesection is when you have around 400ml (in my case) of blood drawn to reduce your haematocrit (the 'thickness' of your blood). It's pretty much the same as a blood donation, except that our blood is thrown away rather than used by anyone else and, depending on your haematocrit, can be a lot more frequent than blood donation would ever be.

For just over a month in the summer of 2010 I was having venesections twice a week because I had just been diagnosed with PV and my blood was very thick (haematocrit of 65) at that stage. This was not fun because the blood will only flow properly from the vein in my left arm.....

[marianela]

Marianela

Thanks for the info on venesections - have never had one. You had a nasty time in 2010

I wonder what happens regarding the venesections if you also have a low red cell count? I always seem to have a low red cell count, a slight anaemia. It is good to compare notes - I am amazed at the difference in side effects and symptoms people have with the same illness.

Cheers Jo_L.

[KevinJH in reply to marianela]

"It is good to compare notes - I am amazed at the difference in side effects and symptoms people have with the same illness."

That's the truth; I was having venesections every week when initially diagnosed with PV and my platelet levels actually went through the roof. So they stopped doing them and put me on HU which brought just about everything back under control in a matter of a few short weeks.

[marianela in reply to KevinJH]

Marianela

KevinJH Good to hear that HU brought your PV and platelets under control, what a relief. Must be tough having two conditions at the same time. Hydra works so well for a lot of people.

[Millions]

Thanks ourlife now I know my messages are coming up on the board mpd voice is a great way to meet people who can give u some advice and I am very thankfully for it as u can get really down sometimes keep well talk soon cheers millions xx

[light]

I have been taking Hydroxycarbomide since 2011 when I was diagnosed with ET. Started with high doze but now I am on lower doze. It appears that it is controlling my platelets well. However, side effects are; fatigue, pain all over my body, mainly muscles, bones, joints. Six months after I was put on Hydroxycarbomide it attacked my joints so badly that my right hip got so bad that I now use crutch to walk. Most of the time I am not able to walk but I still do some exercise and walk, just to keep myself going. Confusion, memory loss, dry skin, hear loss, sometimes I have mouth ulcers, weight gain about 20 lb., dizzy spells, anxiety attacks.....etc.... I might of forgotten some of them....

In order to help myself with all this I take supplements such as enzymes, vitamins, drink water three liters a day, and pray. Wish you all well.

[Digger031145]

I've only been on this just over 4 months and it is ruining my quality of life and work.

I never had any symptoms from having ET but now since taking this I have excruciating muscle pain. So much so, that I had to take two weeks off work. Returned last week and withing 2 hours of being at work the muscles in my back started hurting again. By Friday I was nearly in tears with the pain and had to phone my Gp.

He now wants to see me tomorrow. Also I've now developed aching hips. Had hard time getting off to sleep last night as so painful.

Getting bad hot flushes too and pounding heartbeat...not fact just pounfing

I am going to ask to come off this. Ad it is my platelets weren't massively high. Mid 500.

Any suggestions please.

I'm feeling so horrible now and low. I do not want antidepressant given to me for a side effect of a drug!!!!!

Quality of life is all I Want.

I had chemo years ago for breast cancer and it was nothing like this.

[Mazcd Partner MPNVoice in reply to Digger031145]

Hi, I am glad that you are going to see your GP to discuss the pains you are experiencing. People with MPNs do suffer with pain in their joints and bones, one study, the results of which we have published in our ET/PV leaflet does report that of 709 people questioned, just over 40% reported bone pain, and the same percentage of people reported night sweats. Common side effects of Hydroxycarbamide include gout (pain and inflammation in the joints) most commonly the toes. I can fully understand that this is distressing for you, I do hope that your GP or haematologist can get this sorted out for you. If you feel you would like to have a buddy to talk to then please email me at [e-mail] and I can send you the details, it might help you to be able to talk to someone else who has ET. Kind regards, Maz.

[heathermc]

I've had Et for nearly 2 years and still take asprin. I'm 52 work full time and see haematologist every 4 months. My platelets continue to rise. And were 873 . I've been told I may have to take hydroxycarbamide once they get over a 1000. I'm petrified. My biggest fear is hair loss which sounds so paltry.

I had depression when diagnosed with this. I've pulled myself round. I find this forum very helpful. Now that my platelets are rising I am panicking again.

[Mazcd Partner MPNVoice in reply to heathermc]

Hello Heathermc, I can completely understand your fear about taking Hydroxycarbamide, this is a fear that we all have when we are told we have to start taking it, or indeed any other medication for ET, PV or MF. I can send you one of our information booklets on Hydroxycarbamide if that would help, just email me your postal address [e-mail]. Yes, some people do experience hair loss/thinning of their hair, but it is very slight, hair does not come out in clumps, as it does when people are having high doses of chemotherapy or radiotherapy. I myself had the same thing when I first started taking Hydroxycarbamide, more hair than normal was in the sink when I washed my hair, but not enough for anyone to actually notice. It might also help you to have a buddy to talk to, a buddy is someone who has the same MPN and takes the same medication and will have had their diagnosis for a minimum of 2 years so they have a good understanding of how it feels to live with ET, let me know if you think this would help. Best wishes, Maz

[Elizabeth368]

Hi everyone I have been taken hydrea for 2 years in threres always something going on. Does anyone have low right abdomal pain in constapation alot. Thanks for letting me join hope to here from someone soon. God Bless Everyone.

[Elizabeth368]

Yes I do I get constapated in pain in lower abdomal on the right side. Chills nerves are bad sometimes. Sleep not alot unless I take a pain pill. Headaches,foggey head joint pain leg cramps over all I'll feeling. Thank you for listening to me. God Bless Everyone.

[Mazcd Partner MPNVoice]

Hi Elizabeth, I am sorry to hear that you are having these pains in your abdomen, you should discuss this with your doctor, and the other symptoms, we can easily blame symptoms on our MPN or medication but they might not always be caused by these. Best wishes, Maz

[MarkD6701]

I'm not sure if it's related but I get IBS far more often than I used to, although that could be down to having a Bowel ischaemia due to blood clots. No-one seems to know what causes my heartburn.

[QueenbazMK]

I started taking 1gm every day 6 weeks ago, the side effects are building a bit but the main ones are sore mouth, aching joints and fatigue. I have found that some days are worse than others and mornings need to be taken slowly. Exercise helps my joints so I walk every day for between 45 mins to an hour. It also helps me sleep. Mouthwashes keep my mouth comfortable. If you are worried speak to your consultant, they are willing to talk to you. I have now come to terms with my JAK2 PV and learninng to live with it, hopefully they will gradually reduce my dosage which they want to do. I hope you saty well and the side effects are minimal for you.

[Digger031145]

Hi Mazcd

I’ve just seen this post.

Since being on HU I have been suffering from periods of excruciating muscle pain in my upper back.

This has been going on for 4 years now.

I wonder if you could check this out with Claire Harrison.

It seems that stranding for even a short length of time sets them off and takes days to feel comfortable again.

This is really getting me down now as it’s affecting my work capabilities

Many thanks

Rose ( from Worthing)

[neela2020]

I want to ask is there any hair loss after been for years on this medicine? Real experiences??

[Mazcd Partner MPNVoice in reply to neela2020]

some people do experience some hair loss and hair thinning. Maz

[neela2020]

alright