I have ET and have minor symptoms,however my consultant said he will put me on anelgaride probably in the near future. Will I feel unwell ?

[Lindsey55]

[angie1]

Hi Lindsey55, I can't answer your question but would be very interested to hear the answer - like you I have ET with very minor symptoms (I've had it for 25+ years) but have been told that when I'm 60 ie in about 8 years time I will have to start treatment - either anagrelide or hydroxyurea. Can anyone out there tell us what we can expect?

[ourlife]

Hi Lindsey55,I am currently on anagrelide, and as with any medication there are always some side effects,and you will never know which ones if any you may experience until you try it.More information about anagrelide can be found on mpdvoice.org . On a personal level my platelets are well controlled,the fatigue is still an issue but is better than it has been on anything else I've tried so far,and I occasionally get stomach problems such as my main meal passing straight through me sometimes before I've even finished it! Some people can get quite bad headache's as a result of this medication but fortunately I have not had this problem.I can not get anagrelide through my GP so have to rely on the hospital as I have the wrong post code! I had been on Hydrea for 10 years and after 5 years the side affects steadily got worse.I wish you well in which ever option you chose.

[Alired]

mpdvoice.healthunlocked.com...

[DENMOOR]

Hiya,

Just to say that I tried Anagralide for 6 months and so did not like it. I had palpitations and just couldnt cope with it so now on hydroxycarbomide and been on it for 9 years. Get so so tired though and joints ache. We all respond differently though and you may be fine on it.

Denise

[Daeminee]

Been on analgralide for a year or so.....just on minimum dose 1 a day....just had headache on first day....seems better than hydrea as far as nausea goes...pain is just 2nd nature now....

[tarifa]

Hi, well I hit 60 this summer. My platelets have been high sufficiently most of the time to require intervention. Hydrea wiped me out, I couldn't function. I struggled with anagrelide for several years. I had borderline anaemia most of the time, the palipitations required betablockers to control them and I also needed a diuretic as AG can cause fluid retention. For the last 5 years I've been on interferon, which has been so successful that I haven't neded it for the last two years, so have been med free. However, 8 years is a long time off and great strides are being made in the meds on offer, so the whole picture will probably be very different.

[StreetPastor]

Hi there,

I am on three Anagrelide a day as my platelets were very high when diagnosed (1845). At my last check they were down to 701 although I expect they will have come down even more at my next check. I think this because I am taking half the dose of aspirin and four extra Anagrelide a week.

Anyway, to answer your question. After reading all the other replys I think I can say everyone is different!!! I really struggled for the first few months, but stuck with it as I had already tried Hydrox. and had a very big and rare reaction to it. I am now doing really well, it's almost as if my body has decided to accept the med's. I have a bad head today, but that doesn't normally happen. Thinks its because I missed my morning drink. Hope you have a smooth ride and dont stress too much about it x (Sticking with is was the answer for me, and not giving in

[Tinkerbell13 in reply to StreetPastor]

Only just seen this, posted a year ago...if you read this, can you tell me more re your bad reaction to Hydroxy, because I had a horrific one, but some medics a bit sceptic that I could have been so ill after taking it. But was taken off it by the doctor. Thank you and hope you are doing well. Tinkerbell

[StreetPastor in reply to Tinkerbell13]

Hi there Tink's,

My reaction was so bad that it is difficult for me to revisit in my mind. I wasn't taken seriously & started having suicidal thoughts, due to my lack of support from my professionals. It took a second opinion to get anyone to take me seriously.

My whole body felt like it was under pressure. My muscles were pumped up & in spasms, my lower legs cramping. My whole body was like it was on fire internally, intense burning. My skeleton was crunching & cracking when I moved. Body aching, sore, hot & cold sweats & shakes, also bad armpit pain. There was intense burning sensation in my joints, My body felt like it was plugged into the electric, with it on full power for 6 days & night none stop. I had wave sensations going up & down my body, intense fatigue. My heart was fluttering & pounding. I felt very sick, sore throat, Pressure in my head & ears. All this with only 14 Hydroxycarbamide tablets in all. I had NO problems prior to this. I stopped HU & eventually my body settled back to normal.

I tried them again as my professional made me feel bad, as no one else had problems on it, so it must be me imagining it........Tried again, same thing happened.

Hope this helps in some way. I must say to anyone else reading this. I was told I was the first one in over 25 years that my professional had seen react like this!

[Tinkerbell13 in reply to StreetPastor]

Thank you so much for writing all this and I can echo every single thing you had - and went on for 6 days too. My daughter still talks about how horrendous I looked and she thought I was on the way out. Recently seen haemo (not usual one) was totally unbelieving when I mentioned severe side effects and said it wasn't heard of! So, how reassuring for you and for me...that we aren't crazy after all. Mind you, if you read the official 'possible side effects' most of these are mentioned.

Am just now on aspirin but told as soon as platelets reach a million she will insist I go on a drug - reading about them, not one appeals. How about you? Best regards. T

[StreetPastor in reply to Tinkerbell13]

None of them are ideal. I'm still on three Anagrelide a day & one Aspirin. My platelets at last count were 450. I also take Amitriptyline as the Anagrelide cause neurological pain & standard pain killers don't help at all. The side effects are under control most of the time. x PS I looked like a ghost & felt like I was on my way out on HU

[Tinkerbell13 in reply to StreetPastor]

You really have suffered...and sorry you are having to be on these various drugs but good they are helping. Think my platelets are about 850 but not due for check for 10 days. As your MPN name is 'street pastor' feel you would be o.k. if I end this 'God Bless You'. Tinkerbell

[StreetPastor in reply to Tinkerbell13]

Thanks, & God bless you also x

[Tinkerbell13 in reply to StreetPastor]

Thank you....T'bell

[Tinkerbell13]

See reply to Street Pastor

[Tinkerbell13]

Thank you for replying, Street Pastor

[Hidden]

Hi Lindsey I have ET and was on Anagrelide x 2 daily for 4 months, at first they were fine, and I started feeling better as they reduced my platelets but I then started with palpitations and started to feel unwell,so they brought my hospital appointment forward and my platelets had climbed higher than they were when I was diagnosed. My Consultant told me to stop them and put me on Hu immediately. I have been luckier than some of these lovely people on this forum as I feel fine on Hu and its been a good friend to me over the past 2 years. I suffered horrendous symptoms when my platelets were high, I never want to go back there.