Swapping Tamoxifen brand from Wockhardt to Tillomed - I’ll update

Going through breast cancer treatment Hormone therapy
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Apparently there is a problem with the manufacturing of tamoxifen which is having an affect on the brands dispensed at Boots, Lloyds and Superdrug pharmacies. I’ve seen a lack of conversation about switching from Wockhardt to Tillomed so I’m hoping I can help anyone else also having to switch because of supply.

I’m going to try and keep this thread going and update with the changes I experience. I know it’s going to be different for everyone but hopefully this will help more people than just me. 

Day 1: first noticeable difference is that Tillomed doesn’t have the film coating that Wockhardt does. I’m salivating a lot more and having to drink more water with it, a common side effect for me with uncoated tablets. Currently taking in the evening so I will report back on how the hot flushes go…

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Hi Rabbit12

I did start a thread “tamoxifen shortage?” two weeks ago and received one reply. I contacted Wockhardt and production has stopped with no definite date to re start but maybe February 2021. I have also been prescribed Tillomed and will start them next month so I will be interested to see how you get on. I have been taking the wockhardt brand for three years. Michele x

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Hi Rabbit12 and Michele - thank you both for starting threads on Tamoxifen shortage, I will definitely be interested to hear how you both get on swapping brands. I will shortly need to order my next prescription so who knows what brand I will get then.

Rabbit12 - which other brands have you tried?

Evie xx

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Hi ladies 

ive just read all of your posts re; changing from Wockhardt to Tilomed, tamoxifen.

I have been taking Wockhardt brand for 12 months. Main side effects hot flushes, mainly night sweats and pretty severe. Also burning mouth syndrome and vaginal dryness.

i changed to Tillomed almost a month ago. Initially, I thought they were better because I didn’t get as. many sweats/flushes. However, as the month has gone on they are about the same as when I was on Wockhardt. I still have burning mouth syndrome and vaginal dryness. Although I have been prescribed Replens for this and it helps. My joints have been stiffer this month, so I’m not sure if that’s due to the change to Tilomed? I didn’t have any joint problems with Wockhardt.

Other than this, I’m managing my crappy symptoms from tamoxifen. I’ve kind of got used to them over the last 12 months, learning to live with it all.

i think I wil see if my

joint stiffness continues as I go into the second month of Tilomed. I wondered if anyone else had noticeably stiffer joints on Tilomed? Other than that, it seems to be ok.

I had a short spell on Relochem 12 months ago and that made me feel dreadful, weepy and very bloated. 

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So I’m 10 days in to Tillomed, one packet down. So far I’ve noticed less brain fog, less acne, no change in joint aches and more hot flushes. 
However this could still change as some have mentioned in this thread of changes at 4 weeks and even some symptoms I haven’t heard of. 
I will continue to update after I’ve finished one month or if something really changes. 
Loving all of you who have taken the time to reply and share your experiences

Firuze x

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hi I’ve just had the same issue and started tillomed which is giving me hot flushes and real sore heads which I have not had since chemotherapy 5 years ago. will try calling round chemists and check brands. in the meantime ill need to persevere with the side effects until wockhardt come back in stock.

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Hi

I’ve been swapped the exact same snd I was worried.  Im 3 weeks in and not much if anything to report.  Maybe change in hot flashes, they seem to come on quicker and are a little  more intense but I dont get loads, maybe 4 or 5 a day. 

X 

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Hi

Thanks for starting this post. I’ve been taking Tamoxifen since March this year and have been swapped between Wockhardt and Tillomed. I really haven’t got on well with Tillomed, it made me feel very low so I stuck to Wockhardt. However now unable to get hold of this brand too but really don’t want to go back to Tillomed, I hope you have a better experience but if you do start feeling low you know why. 

Another Pharmacy near me has recommended Genesis, I haven’t tried this one yet, if anyone has any feedback it would be great to hear. 

Thanks

Jaz

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Hi, I came to the forum today because the chemist changed my Tamoxifen brand *yet again*! It’s brand number 5 in basically 1.5 years

I started with Mylan in January 2017, and for 2.5 years I always got that one, it was fine.

Last year they didn’t have Mylan and gave me Genesis. I was wary of it, but it wasn’t so bad. Four months later (so after just 2 prescriptions), the only one available was Tillomed: this one was awful, my side effects went through the roof! Joint pain, high level hot flushes, a general feeling of something not being right. I held on through a pack (one month), but went back to return pack number 2 and they managed to get me Genesis again.

After about 6 months on Genesis, there came yet another one: Relonchem. I complained again, but they had nothing more, so I agreed to give it a try. In the meantime I actually wrote to Mylan asking why theirs was never available, and I got a reply that reading between the lines basically said it had to do with Brexit and the problems with ingredients availability. Eventually, I think about 2 months ago, I found out they simply gave up on tamoxifen and it’s no longer stated as available.

I was lucky Relonchem wasn’t that bad, because it was the one I’ve been taking for about 6 months. Higher level of hot flushes and night sweats, but what could I do?

Two months ago when I picked up the previous prescription, they gave me Tillomed. I stated there and then that I couldn’t take that, eventually they contacted the warehouse and found more Relonchem for me. And today, once again, a new brand, this time Wockhardt.

I’ve been looking at the ingredients list and it seems similar to Mylan, so I hope it’ll be ok, but once again it’s a question of the body getting used to a whole bunch of new stuff I’m getting inside myself.

Why are there so many brands, why do they all use different other ingredients? Don’t they realise the impact it’s got on women’s bodies? We just put up with it because there’s no other alternative! Although after reading Caroline Criado Perez’s book, “Invisible women”, I probably shouldn’t be wondering this…

Sorry if I sound despondent, it’s just one too many thing

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Hi ScarletBea,

Wow what a journey of brands you’ve been through! 

I’m now on box 2 of Tillomed and the additional hot flushes have subsided, but I get a lot of joint pain when I exercise or walk long distances. 

From what I hear in this thread alone, we all have different tolerances and preferences of brand, and all experience some level of change when we are forced to take a different brand. 

It’s hard when we have such amazing access to healthcare to complain, but I still feel like they should either improve the fillers so we just take standard tamoxifen, and not a ton of other ingredients that appear to cause different side effects, or give us a choice of brand that gives each of us less side effects, and be able to request that brand. 

I am sure tamoxifen isn’t the only drug that has this issue, and I’m sure it applies to a lot of daily oral therapies.  

Firuze

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I’m just finishing my first pack , it’s by Relonchem.  They don’t seem coated and give me indigestion even though I take Omeprozle type tablets. I take mine in the morning. So do different brands effect you in different ways? I’ll be getting a new pack tomorrow.

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Hi, just found this thread and thought I’d comment with my tamoxifen experience. I started with the Wockhardt brand in July this year and did have some side effects, mainly hot flashes, dizzy spells and joint stiffness. But it was manageable and after a few months it settle down. I was then given the brand Tilomed and within an hour of taking it I felt nauseous. I took it for a few days but then called my go and was able to get hold of the Wockhardt brand again. I had felt ok and the dizziness went completely, hot flushes &joint pain have eased up and manageable. Got a new batch last week and although it had Wockhardt on the prescription I was given 2 months of Genisis as they didn’t have Wockhardt. Ive been on it for a week, I take it before I go to bed. The last few days I’ve felt weird, the dizziness is back and i have muscle and bone pains. its so annoying… I was told back in July you’ve got to give your body time to get used to it and allow side effects to settle… but how can you get used to it if the brand changes every 2 months! Arghhh!

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Hi everyone,

Latest update: man am I sick of Tillomed. I’ve still got hot flushes every time I eat hot food or lie on my back in bed. My joint aches are very noticeable and are stopping me from exercising. I am now going bald from thinning hair on my head, while also growing darker hair on my belly! A 33 year old woman turning into a man. Honestly these side effects are the worst I’ve felt from tamoxifen and I’ll be trying to speak with my GP this week to ask for a green slip prescription paper to hunt down stock of Wockhardt (Brexit is going to make this harder). 
Oh, in addition, the thinning skin in my intimate areas has only been sort of helped by Oestrogen cream applied every 3 days. 

Hoping you’re all having a better experience or finding ways to change brand if you can.

Get me off this drug brand

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Hi,

I’ve taken Mylan brand for 3 1/2 years until October. Since it’s demise I was prescribed Relonchem - joint pains  and stiffness were greatly increased. I requested a change of brand and now am a month into Tillomed and I really wish that I wasn’t. My head feels like it’s packed tightly with cotton wool. I’ve become hugely forgetful and the brain fog is like thinking through treacle, so much so that I have been unable to work. I’ve had such a desperately low mood/ feeling of despair. I feel like my eyesight has deteriorated  too. The pharmacist has ordered another brand but she has no choice as to what this will be. Let’s see what tomorrow brings. It’s definitely a bumpy ride!