I am beginning my third year of treatment for Essential thrombocythemia (ET), and my platelet levels are now within the upper normal range. Over the past 9 months or so I have experienced tingling and some numbness in my hands and discomfort in my feet. My GP has done prick tests on both, and I was surprised to discover I did not feel some of the tests. My GP does not think I have any other reason for this condition apart from my medication as I have very strong pulses to both hands and feet, and have no other reasons for the symptoms. However my Haematology telephone consultant on Tuesday says with surety that Peripheral neuropathy is NOT a side effect of Hydroxycarbamide.
I looked her up and she is a young doctor and had no indiction of Haematology training, so I am not going to take her word for it. But I would like some reassurance one way or the other.
This is the first winter I have experienced very cold fingers and toes in cold weather. I used to sometimes have cold fingers when going for a walk, would wear gloves, but after about 10 minutes would have to take them off as my hands were boiling hot! Now I am not taking them off at all. I am a botanical artist, so maintaining the use of my hands for detailed work is important to me.
Otherwise I have been managing pretty well with the treatment. I did a successful exhibition in June 2024, and was later asked to teach an established botanical painting class for a 5 hour session every fortnight. Probably not too bad for an almost 78 year old! (in just over 2 weeks)
I would like to know if anyone else has suffered from this condition?
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Hello @Modesigns - I’m on Hydroxy too - was on it for 13 years previously, then had a few years on Peg interferon and been back on Hydroxy since last summer - and yes have had the exact same peripheral neuropathy in hands and feet for many years - it definitely is a Hydroxy side effect but equally it can be part of Essential thrombocythemia (ET) as the years go by to - I still had it the years I was on Pegasys. I use compression gloves that can give some ease - I was recommended Neo G Comfort / Relief Arthritis Gloves which you can get at Boots they are great - but also there are quite a few lighter ones on the market for lighter compression that may be handy for your work - Grace and Able are lovely - the shop on the Versus Arthritis chariot website sell them in all sorts of nice colours
Certainly it is a well known side effect of Hydroxy - something like the info on the MacMillan website for Hydroxy could be handy to show your doctor. All the best
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Thank you @Jilly20! I will check those out.
I don’t have a problem convincing my GP, but I wasn’t expecting to have to convince the so called Haematology consultant. It is often a different person each time, and I am not sure that any have been haematologists, except the consultant I saw the first 3 times face to face. I will make sure I have all my information to hand for the next appointment.
Interesting that you say it could be also as a result of having Essential thrombocythemia (ET). Although with it not appearing until I had been on H for over a year I think for me it will be the medication. I do know that people who have had full chemo post surgery etc may get it quite seriously, with it sometimes abating after the chemo treatment is completed, and sometimes being permanent which may make sense of you having it while on Pegasys as well, especially if you had had it for a long time.
PS: Have just looked up the Grace and Able gloves and I can feel the comfort of them in my imagination already! Will try them! Thank you!
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My hands and feet are usually very cold, even when the weather is not exceptionally cold outside. My hands were tingly when first diagnosed in 2020, and recently this was an issue. I have just had chemo meds increased as platelets were high. My Mcmillan nurse told me it was an Essential thrombocythemia (ET) symptom, not so much the hydroxycarbamide
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That is interesting @26051953. I didn’t experience it until about a year ago after I went on to the higher H dose. My hands were, until very recently, rather hot hands…hot hands and hot feet! I am disintegrating by the minute!!