I have Jak2+ET and have been taking aspirin and hydroxycarbamide since diagnosis 6 months ago. I think I have been quite lucky with minimum side effects but recently have been experiencing dizziness, nausea,mild sickness and stomach discomfort which is having a big impact on my life. I am a 69 year old female, relatively fit but am struggling with what’s happening.
Has anyone else had delayed side effects? I have not spoken to my doc as I have found him very dismissive and unsupportive prior to and since diagnosis and am not due to see my hospital doc for another 4 weeks.
I would appreciate anyone who can throw light on my issue.
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Ozziepig
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Sorry, just noted it’s your GP you’re unhappy with. Could you see another in the practice? Are you assigned a CNS at your hospital who you can discuss these symptoms with?
I take dispersible aspirin in the morning after breakfast. I’m very lucky I’ve never had any issues, however, a lot of people do have issues with aspirin, even with the gastro resistant type.
Some members take a proton pump inhibitor drug to further protect their stomach. Also, there is an alternative to aspirin called clopidogrel which some MPN patients have been transferred to.
Your health care team are the only ones that can determine the cause of these new symptoms.
Interesting name / handle, does that imply that you are an Ozzie?
Hi, my name is Steve, (from Sydney)...
Firstly, it is essential that you must have a good working relationship w/ your medical team (GPs) included of course...
Far too many in medical profession are so naive about MPNs, and therefore you really must find a more attentive ear / bedside manner from your next GP, in my view...
MPNs are chronic conditions that will most likely be w/ us for sometime... Hence, it really does matter...
Not sure if your description, "gastro-resistant aspirin" is the same thing as 'Enteric-coated' Aspirin. It certainly made a huge difference for me...
Best wishes, stay safe & well, and do let us know how things progress w/ your symptoms and your next GP...
Do you take coated Asprin it protects your stomach more and also take with food. I take Hydroxy and asprin in the morning as feel it may be better for stomach as you are eating more during day and moving around. Others take at night to sleep through side effects but I am a poor sleeper.
I have been on both for nearly 2 years and so far ok - am also 69
Hi . Yes had same thing happen after about 6mths, started with going on gastric resistances aspirin first then onto Omperazole , which has helped .. But like others have said first get medical advice and hopefully all will be ok with just this adjustment but always good to make sure nothing else .. Take care keep safe ..
I am ET JAK2 and been on Hydroxycarbamide and Aspirin for 3 years and I have all the symptoms you are having. My GP has no answer and says I am a difficult case and my Haemo says they are not linked to ET or Hydroxycarbamide which I don't believe. So I will be interested to hear what either your HP or consultant has to say about it.
Hi Heather, sorry your GP is like this and saying you're a difficult case!!
I would be insulted if anyone said that to me, feel you need to perhaps ask to change to Clopidogrel which I have and I am fine. I was just falling to the ground with Hydroxy and Aspirin.
Hope you get help soon, yes speak to your Haem asap, think you should not be feeling like this. Good luck, Jenny
I started on hydroy and asprin 4 years ago and after 3 or 4 months was suffering with stomach problems (no dizziness)so was prescribed omeprozol by my GP, to protect my stomach. I have recently stopped taking the omeprozol and seem to be fine -but I do plan to discuss with my haem nurse when we next speak. I would certinly recommend you speak to either your haem team or GP. A stomach bleed is not what you want!
The symptoms you have been experiencing may well be down to the aspirin rather than the hydroxy. As others have said perhaps time to throw Omeprazole into the mix (it’s certainly something I’ve had to resort to at certain times given my drug mix). If that doesn’t work then there are options other than aspirin. Your haem, CNS and / or (fingers crossed) your new GP should be able to help. Let us know how you get on.
I have been taking Hydroxy since being diagnosed with ET JAK2 + 2 years ago with a couple of breaks but back on it for the last 5 months as I had a suspected Gastro bleed in April. They stopped my enteric coated Aspirin and six weeks later I got a small clot in my little toe (extremely painful)! They put me on Clopidogrel instead of Aspirin and Lanzoprazole for stomach .However, my body just cannot take any of the proton pump medications. I get chronic diarrhoea. It's coming up six months since back on Hydroxy and I'm having bad stomach /abdominal pain throughout . I feel slight nausea occasionally and also shortness of breath when out walking all of which I'm convinced are due to Hydroxy. My bloods at last test beginning of August were all back to normal. I have telephone appointment with Haemo Nurse at beginning of October. Your problem s may be caused by the Aspirin and hopefully you can feel better when on Lanzoprazole or Omeprozole . Hope so! Good luck. Fran
My stomach couldn't tolerate any form of aspirin at all, my MPN specialist immediately changed me to clopidogrel which doesn't hurt the stomach at all.
Aspirin, even the enteric, is a known GI system irritant. It may be contributing,; however, all of the side effects you have noted are known side effects of hydroxyurea (AKA hydroxycarbamide). You have to bear in mind that HU is "a highly toxic medication with a low therapeutic index." Signs of toxicity are common at therapeutic doses. While some people can tolerate HU, others cannot. Here are some reliable sources with information on HU.
It is very important that you be able to consult with a MPN expert doc regarding your treatment. Most docs, even hematologists, lack the expertise to provide optimal treatment for MPNs. Here is a list of docs mpnforum.com/list-hem./ .
Good decision to change docs. Being dismissive is not acceptable behavior from a physician. It is always the case that assertive patients receive higher quality care. Passiv patients do not.
You have very legitimate concerns about the impact the meds are having on your quality of life. It is your body and thus your decision about what you should take. There are other less toxic options if you do need cytoreduction. Unfortunately the other meds are much more expensive so some healthcare systems resist their use, even when they are better choices for the patient. You may need to be assertive to access all options for your care.
Hope you get it worked out ASAP and feel better soon.
Yep to all but I’m thinking it’s more related to ET as I went off hydrea for now a month to see if symptoms went away. Did not. Nausea isn’t quiet as bad but dizziness still is. I understand about the docs attitude. Battling that myself. But he’s the doc that’s in-network for insurances so I’m learning to do a lot of research myself and making my own decisions about a lot of things. Good luck. Ginger ale and oyster crackers make a good snack!!!!
Are taking them on an empty stomach?For myself i always without fail take my aspirin and hydroxy with food. As they are both strong drugs for different reasons i feel they shouldnt be hitting an empty stomach.
And i dont take then together either. I have hydroxy with lunch and aspirin with dinner. I believe these have saved me from having such side-effects.
Thanks for your comments. I may need to look at not taking aspirin at night time and see if that helps. May try at lunchtime.
I take hydroxycarbamide after my evening meal which I’m okay with. It seems that lots of different things work for people and I have been following what the hospital suggested which isn’t working!!
Hello Ozziepig, sorry that you are experiencing these horrible side effects, I would definitely speak to your specialist nurse about these symptoms. Best wishes, Maz
I was diagnosed ET Jak 2-12 years ago. Now aged 78 and going strong thanks to kind care from hospital team .I have nurse telephone number and can phone if concerned. GP surgery are all locums .
I am 68 (69 in January), have ET JAK2 +, take Hydroxyurea and an enteric coated aspirin 81mg. twice daily. I was surprised to see your post as we were similar.
I just started year four since diagnosis and starting my drug regimen mentioned above. I did have stomach pain. I felt it across my diaphragm. It has come and gone, wasn't terrible but it did get my attention. The symptom that been the most life altering is my lack of appetite and disinterest in preparing meals. I enjoy meals if someone else prepares them. I used to enjoy cooking.
I am a Nurse Practitioner in Washington/Oregon, USA.
I miss my career and can't tell where feelings about that end and Hydroxyurea side effects on mood begin. It's probably both. I don't seem to have interest in doing things I used to enjoy. I have been depressed in my life and am not having the distress I felt then. This has been part of my Hydroxyurea experience.
I have developed a secondary skin cancer that can occur with Hydroxyurea. They use the term "non-melanotic" skin cancers. Many of the new "biologics" list the skin cancer risk. The type of skin cancer is called Cutaneous Squamous Cell Carcinoma (cSCC). It scares me more than my ET I think. I am blond, blue eyed and have lots of lovely brown spots from sun exposure in the past. You might want to establish yourself with a good dermatologist for routine examination of your skin..
I try to read about the studies and the disease itself but need to avoid it briefly to scoot it out of my thoughts.
l used to tell patients that "nobody loves your body as much as you do". It surprises me when I see my MPN specialist and I know something that she hadn't heard of or read about. An example: In the USA Hydroxyurea is usually prescribed as 500mg. once or twice per day. No other doses considered. I read that pediatric patients with Sickle Cell Anemia are treated with Hydroxyurea. Droxia is the brand name and comes in 100,200,300,400 and 500mg. I take 800mg a day instead of the 1000mg. I was and would be taking if I hadn't mentioned it. No one I was seeing had heard or thought of it. That's one of the best things about this site. We share our wisdom and fears with each other.
I would be curious to hear about the symptoms you were having prior to your diagnosis. I think I was having symptoms that I can attribute to this disease in my mid to late 40's. (migraines, one sided visual dimming and diagnosis of a tiny stroke at 50. It was diagnosed as "migraine". ET is rare enough that it's not on anyone's diagnostic radar. It's not recognized as a presenting cluster of symptoms and instead each symptom is felt to be attributed to something else. It's when the abnormal platelets and/or platelet count elevates.
All in all my symptoms have been mild. We are both on the regimen most widely used by the world's leading experts for high risk ET. I would like to try Pegalated Interferon but it costs $4,000.00 dollars per month.
Unless you have a history of gastritis or ulcers you can feel pretty safe on two 81mg. enteric coated (they don't dissolve in the stomach. The coating dissolves when it leaves the stomach and enters the small intestine). The drugs for gastritis and ulcers that are over the counter here all decrease the acidity in the stomach. It's one of those "don't mess with Mother Nature" issues in my book as our medications, vitamins, minerals, supplements and the food we eat depend on the normal gastric acidity level we have if we don't alter it.
I hope to come to London after a vaccine is found for Covid. I would like to meet the amazing Maz, pick her up, swing her around and thank her for being so amazing. I would definitely like to meet you too.
I too have wondered looking back if ET had effected me much earlier then diagnosis. I suffered from bouts of fatigue and headaches for years but not knowing abt possible ET l attributed it to having thalassemia trait. As it seems to be a symptom of that.
I have only been on HU a short time still at platelets reducing stage but seem so far to tolerate it well. I too am thinking of Peg but feel uncertain. Guess time will tell. Thanks for the info on Droxia l will raise that with my haematologist
Hi, when I was initially diagnosed I had Aspirin and Hydroxy and would literally find myself falling to the ground. For me it was that I couldn't take that mix. I was changed to Clopidogrel and Hydroxy and magic, all ok. Don't know if this might help you or was just a coincidence but I'm fine now. Oh I also have Menierres disease which might have been a factor in this. Hope you find help soon.
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