Hydroxycarbamide: Afternoon all, can anyone help... - MPN Voice

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Hydroxycarbamide

Superwoman profile image
20 Replies

Afternoon all, can anyone help. I have been on Hydroxy now for nearly three years and I feel that I have done really well on it considering that I normally suffer bad side effects from many drugs. Well today I picked up my repeat prescription and the chemist have given me Hydrea by Squibb and I normally have Hydroxycarbamide from a company called Medac, although they are the same drug, the Squbb one are a bright pink and grey and some of the ingredients are different, have spoken with Boots the chemist and they are trying to tell me that they can longer get my ones, has anyone else every had this happen to them. Originally the Medac ones were given to me by the Hospital as they felt that my history of not agreeing with tablets they felt that these one would be OK for me and so far so good. Do you lovely people think that I should speak with my cancer nurse to see what they think, I do not have my appointment with my Heamotolgist until May, and very very reluctant to take something that could upset me, bad enough having ET and being messed around with different makes of tablets now to.

Sorry to of gone folks, just though someone out there might be able to give me an answer.

Have a good weekend all.

Jean

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Superwoman
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20 Replies
Karen1970 profile image
Karen1970

Hi. Yes I had the same happen by my GP chemist who gets my meds in for me and I had a bit I of a wobbly about it and they explained they were cheaper. After I had a bit of a melt down saying I wanted my usual ones they never gave me them again. I think mentally I had just got in my head that the ones my Prof had originally supplied and handed over to my GP to get were the only ones I could take and weirdly I just didn't like the change. Maybe I was having an off day 😔 X

Superwoman profile image
Superwoman in reply toKaren1970

Hi Karen, just been back to Boots, but the pharmacy told me that she thinks they have been discontinued, I am very reluctant to take a different tablet when the one that I am on works well for me. When I explained that some of the ingredients were different she said but it does have Hydroxycarbamide  in it, dah !!! Can I not read, makes me so cross. The one thing like you is I am used to this one and happy to take, as most of the time I feel really well, the other thing she said was, that I should not be drinking with it, really!!! I enjoy the occasional glass of wine with loads of ice in drink 2-3 litres of water per day, keep fit, eat healthily, so if I could not have a small glass now and then, boy I had to bite my tongue 😜 A Chemist trying to tell me how to live my life.

Anyway will find out next week if they can get the original one, not holding my breath though.

Keep smiling

Jean

piggie50 profile image
piggie50

Hi Superwoman,

My hydroxy is perscribed by my heam after my clinic appointment and dispensed by Boots within the hospital.  I had my last appointment the Thursday before last and they have dispensed Medac so I don't think they can be discontinued.  My daughter had the same problem with Boots and her contraceptive pill and the pharmacist got very irate with her, even going as far as comparing the contents with her, she ended up going back to her GP.  A friend also had a problem with a different brand of omoperazole and insisted on her usual brand which she eventually got.  I don't quite know how it works with Boots buying medication, do they just buy the cheapest brand?

Could you get your prescription fulfilled at the hospital pharmacy?  I would definitely contact your nurse and see if she can help.

I totally understand how you feel.

Good kuck

Judy x

Superwoman profile image
Superwoman in reply topiggie50

Hi Judy, I think I will speak with my chemo nurse next week, my feeling is if it works don't mess with it, so if I have to get the hospital to prescribe so be it, the Pharmacy lady got a bit shirty with me, but I stood my ground, I bet if it was her that had an MPN it would be a different kettle of fish, they just do not seem to understand 😠

Jean

bruddery profile image
bruddery

hi. I was on the squibb hydroxy for nine years. Generally well tolerated but when up to 4 a day used to get mouth ulcers. Never really had anything else. Now on ruxlitinib due to progression. Good luck with it. Bruddery

Superwoman profile image
Superwoman in reply tobruddery

That's good to know, thanks for that.

Jean

Helpatlast profile image
Helpatlast

I wouldn't worry to much I have had HU for 10 years now most of the time mine had been the Squibb ones odd times the ones you are used to - they all work effectively and do the same job - all the best 

francesb profile image
francesb

Hi Jean

I have been on Hydroxy nearly three years, never occurred to me there might be different brands as mine come from the hospital pharmacy in a white box with label printed by them.  Anyway just looked at the back of a strip of capsules and mine are Medac and I only picked these up last week, so still available at Lloyds Pharmacy in hospital.  Hope you can get your usual, best wishes, Frances

Sand-Dancer profile image
Sand-Dancer in reply tofrancesb

Hi. Jean.  I am exactly the same as Frances.  I didn't realise there were different brands.  Just checked mine and they are Medac and I only got mine from the hospital pharmacy two weeks ago.  Do you have a specialist nurse at your hospital you can ask?  Good luck.  Lesley x

tracey13 profile image
tracey13

My husband gets he's hydroxy from his haematologist at the hospital. Our gp can't prescribe this medication.

Nothing worse a change in ingredients hope this doesn't happen to my husband. 

Tracey

jamieisabella profile image
jamieisabella

I have been on Hydroxycarbamide for a year and this was prescribed through the hospital pharmacy then I changed over to my GP and the same thing happened to me. I picked up the prescription and it had been changed to Squibb. I am reluctant to change as I have had no problems with Medac so I am informing the Morrisons pharmacy and if I get the same rubbishy about Medac not being available I will go back to having Guys dispense it. I'll let you know!

catkinspolymer profile image
catkinspolymer

Hi Super ,  I have been on squibb for 25 years with no problems

Town Crier

Superwoman profile image
Superwoman

Hi fellow MPNs thank you so much for all your comment, it just proves what a wonderful bunch you all are, will stand my ground with chemist, and speak with my Chemo nurse next week. The chemist has done this to me before with blood pressure  tablets and boy did she get it wrong, the generic one made very unwell and blood pressure shot up, now back on my original one and my reading have gone back near normal, do not like them playing god, as I said earlier, if it works don't mess with it!!!

Loubprv profile image
LoubprvVolunteer

Absolutely stick out for the hydroxicarbamide that you're used too.

You'll be told that they're all the same - they're not, they contain different fillers etc.

I react badly to levothyroxine other than Wockhardt.

Don't let anyone pull the pullover your eyes!  I have just picked up 6 weeks supply of medal hydroxi ( white ) so they haven't been discontinued. Suggest you print and take along all these replies! Failing that get them to phone the Christie in Manchester to confirm.....

Best wishes

Louise

Loubprv profile image
LoubprvVolunteer

Pullover supposed to read wool over.

Can't get this site to let me edit!

Superwoman profile image
Superwoman

Oh I am glad I am not the only one, had the same problem

Superwoman profile image
Superwoman

This does make me really cross, if they come back to me next week to say they cannot get Medac I will go from being Superwoman to the Hulk😄 And get very angry😤 

mickey64 profile image
mickey64

Mine were pink and grey and were called Hydroxurea, never had the white ones.

Lucycourt profile image
Lucycourt

I was prescribed Hydrea 500 made by SQUIBB(green and pink ) when with my London Hospital &GP . Hospital here in Scotland  have always given me Hydroxycarbamide made by MEDAC in Germany (all white ). I so much preferred the twin colours alas hospitals do not use that make and the surgery I am registered with do not prescribe .

I was told by london hospital pharmacy that tabs had same effect .

Green and Pink stood out . But hey they all work and keep us alive and frequently kicking !!

Bill_E profile image
Bill_E

Hi Jean. My haematologist changed me to Squib manufactured hydroxyl car amuse, as he felt that other manufacturers drugs were of lower quality & that they were less abbé to control platelets effectively. 

Essentially I have noticed no difference  whilst taking the 'Squib' tablets. No additional SE's & no change in taste. 

I hope this helps?

Bill

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