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Hydrea and a certain smell

Hi Everyone. I have held off writing his post because it sounds so weird but it's time I said something so here goes. I'm 60 have ET and am Jak 2+. I have been taking aspirin since diagnosis in November 2014 since November 2016 have been taking Hydrea. Since commencing on Hydrea I have noticed a certain smell that seems to eminate from my skin. It's not all the time but often enough to notice. It's hard to describe but I would say it's like a burnt acrid smell. Three months ago I lifted my Hydrea from 1000mg 5 days a week to a 1000mg 7 days per week and whilst this has dropped my platelets down to 412 (hoorah!) this smell has increased in prominence. Without being too gross, the smell is evident when I go to the loo as well. Has anyone else experienced anything like this?

Mark

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Hi Kinsale, I have never had this happen and I have been taking Hydroxy now for nearly 10 years, maybe others on this forum will be able to tell you if they experience it. Maz

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Hi Maz- thanks for the update. This smell is very 'chemical' and I suspect it's just me, but I will try to find out what is going on and let you know if I find out anything.

M

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I am not aware of a smell from my skin but certainly from my urine. It became stronger when my dose of HU was increased. I try to deal with it by using baby wipes, and that seems to work. Sallie

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Hi Sallie - thanks for the message. This chemical smell is unusual and I'm sure that an answer will be unearthed sooner or later.

Mark

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Hi,

I am on 2 x 500 mg for 5 days a week and 1 x 500 mg 2 days a week, but I have been on 2 x500 mg every day for about 8 years. No, I cannot say that I have noticed any different smell so I asked my other half. He says that he never noticed that either. Now, my stomach was a bit upset when I first started on the Hydrea but I am drinking Kefir (home made) so that is settled. Is it just you or have other people noticed it?Is it in the morning or all day? Have you thought about the food you are eating, if happens when you eat something, for example fish?

I guess you have to ask the doc. and play detective...let us know what you find out.

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Hi Swede - I have had an absolutely smooth transition with Hydrea (touchwood) and this smell is very chemical and presents randomly. No one else say they have noticed it, so it's just me and I don't eat any seafood at all. I will persevere with trying to nail down what is hoping on and keep you posted.

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Hi Mark

I just wanted to say there is nothing weird about your post! I experience this myself! Exactly as you describe, it is not an offensive smell, more a "hospital" smell, you know that odour of iodine... Our dog and cat sometimes react by sniffing and then backing away😂😂

And as far as I understand this can be caused by several different drugs and is not often acknowledged or reported by patients as a "side effect. Part of my work used to with people with a variety if chronic conditions many of whom described exactly what you are describing. So I was not surprised when I experienced this myself.

There is a lot of good research on body odour as a manifestation of disease, so maybe just mention it to your doctor or GP and they can test your urine and check you out to make sure ther is no other underlying cause.

Sorry for rabbiting on, hope I make some sense. And thank you for posting this, important that we do this as people can feel a bit odd saying "there's a smell..."

Susieq

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Hi Susieq - thanks heaps for your reply and it gives me heart that you understand. This chemical/hospital smell is so different to anything I have experienced before. I agree and will discuss it with my haematologist when I see her in July.

Mark

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Hi Mark, no bother at all! Wish you all the best!

Susieq

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Hi Mark, sometimes in the morning when I get up I think what's that smell? My urine however smells all of the time! Though I drink lots of water. I take hydroxy and clopidriol. Regards Carole.

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Hi Carole - yes I agree re keeping hydrated and wonder whether the times when I'm not as diligent at keeping my water intake up is when this chemical smell becomes more prominent.

M

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Hi

I just had to introduce myself because you are the first person on here who has mentioned the they are taking the same as me. ET and JAK2, age 66. Regards Penelope

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Hi PenelopeMK. Lovely to meet you. Since commencing taking Hydrea in Nov 2016, I must admit that I have approached taking it with somewhat of a siege mentality ie 'I'm going to take the bare minimum' etc etc. My (very patient) haematologist has allowed me to try this approach but I soon realised that taking 1000mg of Hydrea 5 days per week was not giving me the results that I (we) wanted and 3 months ago I lifted my intake to 1000mg each day. The result has been that my platelets are down to 412 (my best result in years) and my haemaglobin etc are reducing when they had been approaching levels that showed a possible transition to PV on the horizon. Long term my haematologist wants to transfer me to pegolated interferon as she feels it is a better drug, but here in Australia it still isn't listed on the PBS so until it is, it's too expensive to prescribe.

Cheers

Mark

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Hi, Now you come to mention it I have noticed a strange odour but it only occurs intermittently and I've never been able to track the source. Maybe it builds up under clothing and is released when you let the air in! I'll ask my haematologist when I see him next week. By the way I've been taking Hydroxycarbamide since 2009.

Nicky

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Hi Nicky - I haven't spoken to my haematologist as yet because the whole issue seemed a bit random. However I too will discuss it with my haem in July.

M

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I take HU 1000g per day, I sweat very much in the sleep before morning, I notice that the pillow has a characteristic smell since I take HU.

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Hi cvita38 - there does seem to be a case re increasing my Hydrea to a 1000mg per day and this chemical smell. Another thing to discuss with my haem me thinks.

M

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Hi mark, just a quick one not really related to your question but have you noticed any hair loss since taking the hydroxy ? Cheers, Ian.

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Hi Ian - funny you should ask this as this has been a hot issue for me. Since starting on Hydrea I've said that almost immediately my hair seemed to feel different and seemed thinner. I have fine hair anyway and I asked my hairdresser who reassured me that she felt my hair hasn't changed. However I have had some thinning of my hair and at my recent appointment with my haem I mentioned this and she confirmed that there can be some hair loss associate director with Hydrea.

M

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Thats my worst worry about having to take it. I mean when you get near 60 and still have your hair that's kind of an achievement. To have to take this and lose it is depressing me greatly. What do you do when you haven't got a choice 😕

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I'm 60 Ian and have a pretty good head of hair. I do understand and share your concerns re losing our hair, but when push comes to shove, I would rather have less hair and a much reduced chance of having a stroke. I have decided that if my hair continues to thin, then I will shave my hair really short.

M

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Yes i agree. Break out the clippers 😂

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I'm on same meds, same dose - Not noticed that. Has your sense of smell become more sensitive? If no one else has noticed. PS I would urge people never to be worried about asking anything on here, we are all adults and all in the same boat. Having said that I've held back on asking something, which I will pluck up the courage to ask soon.

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Hi RafflesUK. This community has been one of my major support systems in dealing with ET since diagnosis in November 2014. This is a nonjudgmental forum where we can 'open our kimonos' and ask any question in the safe knowledge that our people understand and will support and help us. My only hesitation was that I wasn't sure that this chemical smell

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I wasn't sure that this chemical smell wasn't just in my mind. I would strongly encourage you to ask your question in the safe knowledge that we are here for you and will do our best to provide support and guidance.

Mark

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Hi Mark, yes, i notice a change in my body odour quite soon after I started taking hydroxy. It’s quite subtle but my sense of smell is quite tuned. I can’t say that I’ve narrowed it to a particular type of small, not really thought that much about it. I just presumed it was normal - seems logical to me that taking a toxic substance would do this! Coco channel works ;-)

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Hahaha - yes re Coco being helpful and I too use one of her men's frangrance. I agree that taking a 1000mg of a strong drug is bound to have a wide range of effects on us including odours.

M

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I have been taking 1000mg 7 days a week for over a decade and haven’t noticed anything at all...but it affects us all differently I suppose.

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Hi Ramy22 - yes I agree - these drugs are complex and do have a wide range of effects no doubt.

M

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Hey Mark,

I was only on HU for a couple of months & as I could not tolerate other side effects, I was eventually able to change to Interferon, although I did not tolerate that well either...

Can't say that I have experienced the same as you describe, however, I may not have been on it for a long enough duration etc...

By the way, if you are based in Sydney, myself & a few others will be catching up for a cafe this Saturday May 26 at 11AM. Feel free to join us if you like. I will send a private message to you regards location.

Best wishes

Steve

(Sydney)

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Hi Steve - re catching up yes I'm free this Saturday. I live at Lake Macquarie just south of Newcastle but am willing to travel down to Sydney.

Cheers

M

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