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Nolvadex-D: How could we get it back?

26 REPLIES 26
Member

Re: Nolvadex-D: How could we get it back?

Please help!

I am coming up to my 2 year cancerverisary and have tried other brands of tamoxifen but really didnt suit me and side effects were horrendous. Started on Nolvadex D and GP was happy to prescribe off licence. Now local pharmacies unable to obtain. Please help as I really don't want to switch to a generic brand?
All help appreciated. Xxx
Member

Re: Nolvadex-D: How could we get it back?

I wish I did know how you could legally help someone in need of five months supply of Nolvadex D - I know that I and lots of other ladies would gladly appreciate them.

Pharmacists are governed by rules and regulations before being able to provide medication to patients and having spoken with my pharmacist today she says that if you took them back to a chemist they would have to dispose of them as no one could be sure that they had been stored correctly, which would be very sad when there is so much demand for them.

I think the only way you could donate these tablets would be by private agreement between yourself and the recipient.

Member

Re: Nolvadex-D: How could we get it back?

Oh how much I would like to help but probably not able to do so.
I asked my GP for a year's supply of Nolvadex D as I was much happier with it. I now find I am going on Femara and still have 5 months supply of Nolvadex left - all untouched and unopened. Anyone any ideas of how I can legally help someone in need of five months Nolvadex D?

I would be prepared to sent it to a pharmacy if that was the way to go.

Best regards.

Jeannie

Member

Re: Nolvadex-D: How could we get it back?

Hi all

I live in Belgium and Nolvadex D costs EUR30 for 56 tablets here which isn't too bad.

I just thought if any of your UK pharmacies are seeking them out from an overseas pharmacy .... Belgium have them.

SG xxx

Jan
Member

Re: Nolvadex-D: How could we get it back?

Thanks Leah for approaching AstraZeneca for a statement.

It would have been nice if they could have ensured that those of us who were on Nolvadex-D and very happy with it, could have continued and completed our 5 years.

Not only do we now have to cope with uncertainty over the side effects from other medication but it is very unsettling to have to swap another drug. It suddenly brings BC to the forefront again when all any of us want to do is move on and get on with our lives as much a possible.

Hope all you ladies who have had to change from Nolvadex-D find something which will be as agreeable to you.

Love to you all

Jan

Member

Re: Nolvadex-D: How could we get it back?

Hi all

Just wanted to let you know that we have now received a response from AstraZeneca:

"Whilst I appreciate your concerns about side effect reporting, I am sure you can understand that we cannot comment on medicines’ profiles manufactured by other manufacturers and provide medical advice on individual cases.

"As we know all medicines can cause side effects which can range in severity and seriousness and therefore we advise that patients discuss their concerns with their healthcare professionals who have initiated their current treatments and also to report any side effects to the Medicines and Healthcare products Regulatory Agency (MHRA), a UK government body whose principle aim is to protect the public’s health via the Yellow Card system which was put in place to that effect

http://www.mhra.gov.uk/Safetyinformation/Reportingsafetyproblems/Reportingsuspectedadversedrugreacti...

"AstraZeneca kept its commitment to provide Novaldex to UK patients as long as it could by manufacturing Novaldex for 31 years post its patent expiry that took place in 1979. AstraZeneca took the decision to stop manufacturing the molecule Nolvadex last year because now practically all tamoxifen used in the NHS is generic.

"In the UK you can check availability for manufacturers of tamoxifen using the following website which provides a list of registered and licensed molecules and patient information leaflets. http://www.medicines.org.uk/emc/"

Member

Re: Nolvadex-D: How could we get it back?

Hello everyone

I'm about to delete the previous two posts about buying drugs online. This is because it can be both illegal and dangerous to buy drugs online without a prescription.

Here are a couple of links about buying drugs online, which go into it in a bit more detail:
http://www.thesite.org/drinkanddrugs/drugsafety/thelaw/buyingdrugsonline

From the Royal Pharmaceutical Society of Great Britain:
http://www.rpsgb.org/pdfs/iplfaqs.pdf

Buying medicine online from a registered internet pharmacy may be legal, but the link posted by BellaLasagne didn't seem to link to a registered internet pharmacy, so we have removed it.

On the more specific issue of Nolvadex-D, we are aware of the situation, which was raised with us earlier this year. We responded to a Department of Health consultation on the subject, and this is what we said:

"Some patients undergoing treatment for breast cancer have raised concerns about the differences in scope and severity of the side-effects they experience when having to switch from branded to generic tamoxifen. While clinical autonomy in prescribing is an important issue raised in the consultation document, so too should patient choice. If patients want to be prescribed a branded drug that they know they are coping well with, and the pharmacist has the option of prescribing the generic form, patients should have recourse to stay on their branded choice even if a generic is available. Either this means that tamoxifen (or other drugs where patients have voiced concerns about increased side-effects) remains off the list of drugs subject to generic substitution or that patient/pharmacist discussion and patient choice is promoted within the guidance."

We are still awaiting a Government response to this consultation.

We're just talking to some other contacts, and hope we'll be able to post a bit more information soon, but that is the situation at the moment.

Leah

Jan
Member

Re: Nolvadex-D: How could we get it back?

It was my BCN who put me on to Nolvadex D. The onc didn't know that it was better on side effects.

I was told that it's probably the coating on tablets but that Nolvadex D was slow release into your system whereas the generic tamox dumps it all in one go.

I have noticed that I've had more side effects from Nolvadex as time has gone on but nothing like the side effects from the generic tamox.

Like you sidney1 it made me very depressed. So much so that I was unable to get out of bed. Just wasn't anything worth bothering about enough to get up for!!! I certainly don;t want to go back to that.

Member

Re: Nolvadex-D: How could we get it back?

It took me ages to work out that the different brands were what caused me to have awful side effects I think Iv had all of them hot flush, stiff joints, depression so bad would sob for hours. I personally think it is the base the drug is put in that causes these horrid side effects although my oncologist didnt agree! I eventually worked out the real cheap brands gave the worse effects and if you didnt specify a brand the cheapest would be prescribed. I was delighted to discover Soltomox solution I have had no side effects I hope you find the same

Jan
Member

Re: Nolvadex-D: How could we get it back?

Hi sydney1

Thanks for that information. I'm just getting to the end of the packs of Nolvadex D that my pharmacist managed to get me back in January. The generic tamox tablets gave me bad side effects so I don't fancy going back onto them. I'll ask the doc for some Soltamox and see how I go with that.

Jan xxx

Member

Re: Nolvadex-D: How could we get it back?

Hi Im 45 taken Tamoxifen for 4 years I have tried every brand going including Nolvadex and eventually settled on Soltamox Solution which is Tamoxifen in liquid form think it made in UK. I found this to be the one with the least side effects and wouldnt change it. I know it is quite expensive but it is available on prescription but you do have to ask your GP to specify it.

Community Champion

Re: Nolvadex-D: How could we get it back?

Hi,
your chemist can still get the spanish nolvadex. Mine looked it up on the computer and it still shows as available but won't be for much longer he says.
lily

Member

Re: Nolvadex-D: How could we get it back?

Hi,I wrote to AstraZeneca this week, the manufacturer of Nolvadex D, Hope to hear from them soon,. But I was speaking to my breastcare nurse today and she had rung AstraZeneca when this issue first came up. They told her there was not a big enough demand for the Nolvadex D, She told them half of us at Blackpool that is on it, was on it because of problems caused by the generic stuff, but according to them there is not a sufficient demand. But I have been told there is a liquid form of tamoxifen, with no active ingrediants in it, but the problem is it is £60 a month, so unless you have a good gp ot pct, there is only a small chance you can get it. It is called soltamax I think not quite sure on spelling.
May be if we all write to AstraZeneca maybe they will rethink and reproduce it.
hope this helps

Member

Re: Nolvadex-D: How could we get it back?

Hi All,

This is so wrong, I am dreading running out of Nolvadex-D and the side effects I will experience again taking generic tamoxifen. I really wish there was something we could do to at least ensure all patients using this drug could at least be provided with sufficient to cover their 5 year prescription. Any ideas anyone?

Member

Re: Nolvadex-D: How could we get it back?

Hi all
the wholesaler that my pharmacist uses has found a source in Germany but I have been waiting 6 weeks for this and have now run out of my stock. back on generics and like the rest of you have gotten back all the old SE's. The pharmacist also mentioned that they might not get paid for their trouble in sourcing it therefore would not get it in again. Can't win. Why can't the health care professionals and charities like this one make a stand for all us women who depend on the drug. At the end of the day it is going to cost the NHS more as we will need other meds to help with the SEs. It seems we have to battle for so much. I had to battle to get the nolvadex, I had to battle to get physio and for me this is just adding to all the stress that goes along with having a cancer dx and personally I feel it was stress that caused it in the first place. Sorry for the rant Smiley Sad

Community Champion

Re: Nolvadex-D: How could we get it back?

Hi,
I visited my chemist and my stockpile of nolvadex is almost gone, just a few more months of tablets. I asked about the Spanish tablets and he said chemists here can still get Spanish nolvadex but not for too much longer. That is going to be discontinued too so you need to stock up if you want to stay on them. I had already had some of them I found out and didn't realise. Apparently astra zeneca have withdrawn from about 8 big areas of health that they don't feel make enough profit for them and so a lot of people will lose their usual tablets. Did you also see in the news that they are shutting UK sections of astra?
Good luck on your tablets everyone
Lily

Member

Re: Nolvadex-D: How could we get it back?

Thanks WestsideSue.

I've asked my pharmacy to look into this. For a little effort it could really improve our quality of life.

As for me, my skin's worse too and my flushes are back. I'm having acupuncture to try to reduce them.

Bring back Nolvadex - we need it!!!

Member

Re: Nolvadex-D: How could we get it back?

My GP raised the matter with my pharmacist, and he sourced supplies of Nolvadex D for the entire duration of my course of treatment. I stockpiled about a year's supply before this happened. Your GP CAN help, and so can your pharmacist.....Astra Zeneca's decision is purely commercial, and nothing is going to change that unfortunately.

Member

Re: Nolvadex-D: How could we get it back?

I bought 6 boxes of 60 in Spain last week at a cost of 58 euros, as long s you have an English prescription any Spanish pharmacist will order it for you.

Member

Re: Nolvadex-D: How could we get it back?

I've been on Nolvadex D for a while now and was shocked when my pharmicist told me 2 weeks ago that they were stopping manufacture in this country. I pleaded with her, and told her about the side effects from generic Tamoxifen (the tiring night sweats etc) and she has managed to get me a supply from Spain. She got 6 boxes so that she can supply me over the next 6 months. I've got 2 more years to go so I am hoping she will be able to keep the supply going!

Jan

Member

Re: Nolvadex-D: How could we get it back?

I suspect we stand no chance of getting Astra Zeneca to resume manufacture here so perhaps we need to explore the possibility of our pharmacists getting it from somewhere else in Europe.

Julie, where is your Nolvadex made, does it say on the box?

Eliza xx

Member

Re: Nolvadex-D: How could we get it back?

I would definitely support it - how could we go about it? Just got my 2nd prescrit of Wockhardt and my skin's worse and I'm getting muscle cramps and aches.
Jx

Member

Re: Nolvadex-D: How could we get it back?

Great idea I would support this. I would love for Nolvadex D to come back it is brilliant. I bet they still have it in countries like France and Germany!

Best wishes.

Nicola

Member

Re: Nolvadex-D: How could we get it back?

Hi Julie & Bella,

Yes, it is a year today since my first rads - can't quite believe it! How are you both doing?

I understand they discontinued Nolvadex in the US some years ago so I assume they are gradually stopping in those places where the sales are lower as generics take a large share of the market.

Eliza xx

Member

Re: Nolvadex-D: How could we get it back?

Who should I make a cheque payable to?!!!!!!

How are you doing? It's been a year since rads began! I hope you're well and having a good time. B xx

Member

Re: Nolvadex-D: How could we get it back?

An interesting point in all this is that I live in the Middle East (Oman) and we can ONLY get Nolvadex - tamoxifen is not available in any other form....... and we buy it over the counter without prescription!
J x

Member

Nolvadex-D: How could we get it back?

Ladies,

There seem to be so many of us affected by the recent withdrawal from the market of Nolvadex-D, that are now having to try different brands and causing our bodies to suffer even more SEs.

I just wondered what it would take to get this drug back on our lovely pharmacist's shelves seeing as I don't think it was the cost that caused it to be withdrawn but the licence expiring?

Would we stand a cat in hell's chance if we raised our voices together?

Please let me know what you think! Bella x