I was diagnosed with ET a year ago and put on Hydroxycarbamide, everything has been fine however last blood tests were not good so they have now increased medication to 2 tablets every 2nd day basically doubling up usual doseage. Yesterday for the first time in a year i collapsed at work, on calling specislist nurse it was suggested i make appointment with GP, im confused what is GP going to suggest, surely this is just reaction to doubling up meds, anyone had similar experience?
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Oh @Colinb collapsing at work sounds scary to me.
I don’t know if you have already contacted your GP, which sounds good advice, but you could also contact your consultant or CNS (Clinical Nurse Specialist) so they know what is going on too.
Please let us know how you get on and look after yourself.
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Hello @Colinb
Thank you for posting this question and explaining what has happened.
Sorry to hear that you collapsed. Whilst I can’t comment on having experience myself, I can make other suggestions.
I think that the CNS would realise you are more likely to get an appointment quicker with your GP than with the Haematology team. Also a GP can rule out other causes for your collapse, for example infections, blood pressure issues, ear problems etc. It is also very useful to have the collapse documented on your GP records, in case it happens again in the future and needs follow up. The CNS probably feels a GP appointment is more appropriate because a collapse from HU would be unusual (however it still could be)and a GP can refer to other teams for investigations.
Sometimes by doubling up your HU it can cause the counts to drop, but I don’t feel it would cause a collapse. I also don’t think your Haematology team would have suggested such a steep dose increase if you were very sensitive to HU (they would know this from the repeated blood tests and dose changes when you started). Taking an extra tablet every second day is quite an increase, especially if you have been on only one per day for the last year. When did you last have your blood counts checked? This is also something the GP can organise.
Have you recently had an infection or virus? Have you been drinking plenty of fluids? It may seem silly to call the GP, but other possible causes need ruling out.
I hope this makes some sense, it’s not the CNS being dismissive, it is the fact that there are many causes for collapse and you may need treatment or investigations to find out what happened, and also to prevent it in the future.
Take care, and please do speak to your GP. Best wishes, Heidi.
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I’m on 2 tablets a day, and have been for 10 years, without any symptoms such as you describe. Oddly, the spur to my diagnosis was a severe attack of vertigo, which GP was sure was an inner ear infection, but fortunately decided to take a blood sample “just in case”. Suspect Heidi’s suggestions (infection, BP, ear problems) are most likely cause, so would suggest seeing GP (if you can!!) as soon as possible. Those are things they can deal with pretty easily.
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Hello Colinb - I am a fellow ET patient and had 13 years on HU (been on Peg interferon the last few years) and I can appreciate your concerns having had that collapse at work! As others have mentioned I think it’s wise to be checked at your GP - as collapse shouldn’t in theory be something that happens with Hydroxy. Just as a reassurance as to actual doses do be assured that it is very normal to have your dose increased and decreased, it’s a norm of the treatment - sometimes just an extra capsule a week is given to help if counts have climbed a little - my initial consultant 16 years ago (who was just coming up to retirement and as he said had had decades of experience with Hydroxy - which I found a good basis to go on!) used to call it tweaking - never worry he would say if I tweak your dose up and down, that’s normal - he also said there were no rights and wrongs some get good control on counts with three capsules a week, others it’s three or four a day - very individual neither worse than the other. Having said that I guess side effects can be more on higher doses - again very individual - and I know my experience was the first year or so on Hydroxy I had quite a few side effects then my body seemed to adjust to it and things levelled out for much of my years on it. The only thing that rang a bell with your experience was how much Hydroxy dehydrates - I know in my workplace I always had to keep really hydrated, had a bottle of water on my desk always taking sips along with the normal office cups of tea - I guess it’s taking that much more hydration than the normal person and having water on hand to almost remind yourself to - it seems to keep ahead of the effects HU can have - I know on days I didn’t keep that up I would get wobbly times and could feel very weak - not sure if weakness would be how your collapse was but it may be something that may help a bit. Let us know how you are getting on, we all like to swop notes and see if we can assist from our own experience.
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Hi @Colinb I was concerned about you and just wondered how you are now?
Take lots of care
Hi Erica, im feeling fine now, ive got a hospital appt on 28th feb and will have blood test done before then and i talk it through with them, i was under the impression that the ET was the underlying cause of my collapses. Id had brain scans and heart monitors on when collapses first occured but it was 12 months after initial collapses that ET was diagnosed
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Hi @Colinb thanks for the update, please let us know how your appointment goes on the 28th.
Take care
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Ive had further blood tests and results are not going the way the consultant had hoped and they practically doubled the Hydroxy, hospital now indicating that they may start a procedure where they take a pint of blood and see if levels change as blood is replaced. They didnt mention how often they would do this and whether meds would be rsised/lowered and over what timescale or next moves if this fails, so a bit confused at the moment
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Hi @Colinb
I don’t have ET but the contents of your post does resonate with me.
Although doubling sounds scary, in some cases they be wanting to get you on a preferred dose and they only way of doing it safely and to limit the potential side effects is to do this gradually. It’s a bit saying rather than thinking your dose is doubling when really you were previously only taking half. Many consultants will start you on a smaller dose so not to shock your body but also see how you get on.
Being on tablets and having venesections is also relatively common too as in some cases one course of treatment can help many things but sometimes a course of treatment can only help one thing. Hydroxycarbamide will help your platelet count and venesections can help lower your haematocrit levels.
If you are ever unsure or worries or concerned about what is happening with you or you feel anxious that things are becoming sparse or intense, speak to you clinical nurse and/or medical team. It’s their job to answer any questions or concerns you have and it’s a part of their job they enjoy.
Apologies if I’ve misread or misinterpreted:)
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Hello @Colinb I am so sorry to hear you are having a difficult time and agree that treatment titration can be confusing. Most of what I would offer as information has been provided by Rammie18. Finding the right dose of hydroxycarbamide can take many dose alterations and at times steep increases, it is also an option to add venesections/taking blood to your treatment plan. Once again the frequency of this procedure is dictated by your blood results. I agree with Rammie18 your CNS or treating team are there to discuss this with you and clarify the reasoning of the treatment they have suggested.
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Thanks for this, we have agreed to hold off on the blood letting for another 6 weeks to see if increased meds do the job, meanwhile luckily i seem to be bypassing the majority of side effects from the hydroxy, long may this continue.
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