Hello everyone. I thought I would post the information I have got about an interaction between these drugs. I have been speaking in depth to a pharmacist and was told that indeed the changes in our skin when we take hydroxy would mean that absorption of the drug in the pain patch would be compromised.
I have done a lot of research into this and I was convinced from my own experience that this is the case. I started on hydroxycarbamide exactly a year ago and during that year the patch has become less and less effective. In the past three or four months I get weekly withdrawal symptoms which cause depression, anxiety, feeling sick and many other things, not to mention more pain. My doctor did nothing to investigate this and I have been put through hell for three or four months - often getting only 3 - 4 hours sleep and sometimes no sleep at all, and it would have been so easy for her to find out what was causing this. Anyone who has had drug withdrawals will know to what I am referring. I would not wish this on anyone.
Good news is that I have managed to get a telephone consult with a top neurologist in London and my Macmillan nurse is getting me referred back to the pain clinic.
It is hard at my age to have to go through this for basic care. I feel very much for those who cannot investigate this for themselves and do not get the help they need.
Anyhow just in case anyone else on the site is interested I thought I would post my findings.
Thank you for all your replies before. They kept me going.
Take care
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Jelbea
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Hi. I have been using Butec patches for some time now. I found that I got more pain for the last two days of the seven day cycle and now use them for five days instead of seven which has made a difference. I was talking to someone else who had the same experience as I did and she was going back to her Dr to ask if she could try a five day cycle. Possibly worth considering?Best wishes, Jan
Thank you for your reply beetle. The patches do not last for seven days for most people. I was using them every five days but they have stopped working and I am in almost constant withdrawal state. When I change the patch days 1, 2 and 3 are bad - day 4 and 5 are a bit better and then back to changing again. The pharmacist definitely thinks that because HU affects the skin cells then the absorption of any drug through the skin will be affected.I phoned my MacMillan Nurse yesterday and she is arranging for me to be seen again my a pain specialist so hopefully he will be able to suggest an alternative. Also when I remove each patch a little layer of skin comes with it and the site is red and sore for several days.
As the risk of skin cancer is already there I feel I should not be doing anything to damage my skin in any way.
hi Jelbea, this is good news, I am so pleased you have made progress with all of this and that you are being referred to get the pain sorted out. Best wishes, Maz
Thank you for your good wishes. I just posted up about all this in case it affected anyone else. It has taken me 4 - 5 months to find out this information and I am looking forward to getting help. Unfortunately I have a very uncaring GP who did nothing to sort it for me.
This is quite interesting, though I am sorry that you are having the opportunity to learn about this. I am thinking this may not be a common experience with HU, but it seems from your experience and research it may in fact be possible.
Please do continue to post more about what you learn. All on HU can benefit from the knowledge you gain.
Hello Hunter. This is why I posted my findings - just in case it may apply to someone else. Sometimes it is very hard to find information especially when it is a more obscure subject. Probably not very many people are having this issue but because I have been suffering a lot I had to keep trying to get an answer.Certainly anything else I find out I will certainly post on here.
That is very interesting as I have been on HRT patches following hysterectomy years ago which work brilliantly with night sweats. I was put on Hydroxy for ET & within a few days horrendous night sweats & palpitations. Also many side effects from then on gastric & fever symptoms & diahorea upon anything I ate. Just came off the drug & they are attempting to decide what next . However I did query the effect of it on my HRT & was brushed aside . Next time I will speak to pharmacist thanks . Julia UK.
Hi Exeter21 I was very interested to hear from you. Perhaps you can get someone to listen and even a pharmacist may be able to help you. You said they took you off the drug. Did you mean the hydroxy? If so, and if the hydroxy was working it would seem a big step to make a change to another one. Perhaps your HRT could be given in another manner and not transdermal. I do wish doctors would really listen to their patients. As someone here pointed out to me recently some doctors come with big egos and do not like to be told anything that might upset their boat.Anyhow I hope you get all this sorted ASAP. Barbara NI
Thanks. No the Hydroxy had to be stopped due to extreme side effects that continued for 6 weeks in which time I dropped 6 kgs in weight & even vegan or vegetarian food would not digest. I am off the drug for a month. The difference is very outstanding as the constant upset stomach is better no palpitations sweats shivers & food being absorbed. My body rejected it . Haemotology are working out what to try next . HRT patches working fine off the hydroxy but hopefully something is found that adjusts to me. We are all different on these drugs . I am usually fit walk lots & weighed 67 kgs at 5’7’ almost Drug left me giddy light headed , spaced out feeling awful . Now dropped to 60 kgs which is too light . Hopefully something works . Julia Exeter UK. 👍
Hi Ex - So sorry to hear the hydroxy had to be discontinued. I am lucky that at present it seems to be working for me although I do feel a bit sick at times and certainly extremely tired (but at 80 the tiredness might be there anyway). Glad HRT is working OK again and I hope you get the ET treatment sorted ASAP. Best Wishes
I'm not sure if the buccal form of Bupe (It's called Belbucca here in the US) is available in the UK or not, but it's something you might consider speaking with your pain specialist about. I had great luck with it and only went off because I was able to find different ways to manage my chronic pain. I'm currently not on treatment for my ET, but only because of a family history of poor reactions to Hydroxyurea and being a woman of childbearing age. I can't afford the newer medications right now unfortunately.
Hi Fluffylittle - Thank you for your good suggestion. Unfortunately Belbucca is very expensive here. I did ask for it about 2 years ago and doctor just laughed. I imagine it could work very well. I was given the patches instead but they are no longer working because of oral chemo, also my skin is liking the patch less and less and getting very irritated.I was so sorry to hear of your problems with medication and I do hope you can get something in place very soon. Life can get very difficult at times!! Good Wishes
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