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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Kinsale
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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
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.
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
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.
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.
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..."
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.
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.
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.
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
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.
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.
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.
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.
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.
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 😕
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.
Hi Kinsale. Did you ever get to the bottom of this? I have the same chemical smell coming off my chest and am also on hydrea. It’s awful! Makes me so self conscious.
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.
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
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.
I am also on hydroxyurea and I also have that chemical smell no matter how much I shower….not all the time but it comes and goes… conscious of that smell if I go somewhere
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
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.
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.
Just ran into your post . No doubt it is an older post but still replying in case it may be useful to others . Chances are that in such a case the Uric Acid levels are very high . It is a known outcome of PV and some MPN,s. It can be checked in the blood tests and can also be treated very effectively within 1-2 weeks. High Uric acid could also lead to gout which is highly avoidable in MPN as well . So be sure to check the Uric acid levels if one senses a strong chemical smell around a patient .
We live in Houston. My husband has ET and is on hydroxyurea, only 500mg a day. I had begun to suspect this newest medication was causing an odor which is very unpleasant to me and even leaves the smell in our home as he would walk around. It happens after he has worked or spent time outside and he has to shower immediately when he comes inside! I was looking up information on this medication and this odor problem seems to not be a part of the side effects! So thankful to find your post because it answered my questioning mind and gives us understanding! He has joined your group by email and I am thankful will have you all for support! Thank you for your honesty in exposing this truth!
You may want to have your levels of uric acid checked as HU can cause an elevation. High uric acid levels can manifest in odors in sweat and urine. It typically smells like ammonia. This is caused by the HU impacting kidney function, Not to say that is what this is, but it would be worth checking as other issues (e.g. gout) can occur if this is what is going on.
Checking kidney function can be done with some simple tests (CMP, Uric acid, etc.). Suggest letting your doc know what you are experiencing, including what the odor you describe smells like.
I'm glad you mentioned this effect of hydrea. I notice it as well. I started hydrea at the beginning of April 2022 and take 500mg once a day. I have an appointment with my oncologist next week and I will ask him. I still experience side effects, like dizziness, and sweating at night, but it has definitely benefitted me in the dropping of my platelets
I started hydrea with my platelets at 1,082,000 and last month they dropped to 650,000. ~PB
Hi Irishsetterlover - in the end I was only Hydrea for a couple of years and not long after my post re the Hydrea smell, I was able to transition to pegolated interferon (pegasys). I must say not having that smell now is great and I gladly put up with the peg side effects as a result. Cheers Mark
Hi Irish setter. The Main two are fatigue (Strong at times), and muscle aches which for me are specifically middle and lower back. These symptoms arrive in injection week. Randomly ie not every time I inject, but sometimes i get a small amount of hives. I manage the main two side effects through acupuncture and massage (both monthly appointments). Like I said previously compared to the unpleasant time I had on Hydrea for two years, these side effects are very manageable. Mark
Greetings,I have been taking Hydrea between 1,000 mg to 1,500 mg/day and my platelet count has gone from 1,200 to 350 within one year (Yeah!) My hematologist diagnosed the cause due to a splenectomy I had about 40 years ago (The spleen filters platelets duhhh - just wish my prior oncologists knew what’s what but that’s a long different story). I have noticed from the time I started taking the Hydrea that my urine as a very pungent alkaline smell is the best way I describe it. I assumed it was a natural side affect of the medicine but I will ask my hemo on next visit and report back. But I haven’t noticed any skin odors.
Hi mark How u doing , I’ve been on Hydroxycarbamide for a month now, and last few days had the same thing as you explained , particularly when I pee , I don’t know if I’m right but i think it’s the platelets dying that could be the cause , if you have found out any different please let me know , Kind regards 👍
Hi Alan. I was on Hydrea for two years and it was never a good fit for me. After that I moved onto Pegasys which has been terrific I must say. Sorry but I haven’t heard anything specific reason for it re platelets. There is some good info in the replies to my original post that may help you. I hope your journey on Hydrea goes smoothly Alan.
Yes! I’ve been noticing it too. First I thought it was the spent gas from my cooker, then maybe something from the air-conditioning, but then I smelled it while out of the house and realized it must be me. I don’t get that it emanates from my skin but is definitely a prevalent odor
Hello Kinsale, I take 500 mg daily and noticed when I don't drink enough water during the day I smell it in my urine, and my husband notices it when he kisses me. My oncologist said just to be sure to drink more water. It may also depend on the individual and their own breakdown of medicine intake,bur since I increased my water I haven't smelled the Hydrea in my urine. Best of luck to you on your health journey.
Yes IrishSetterLover, the whole ‘make sure you keep up your daily water intake ‘ is something that applies to all of us that are in treatment. My goal is 1.5L per day. Coming up 7 years on treatment (2 Hydrea and (5 Pegasys ) and it’s still something that I have to focus on.
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