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Problems getting Exemestane?

21 REPLIES 21
Janey2
Member

Re: Problems getting Exemestane?

I'm sorry to hear of your financial worry Carsid. Luckily in the UK our prescriptions are still free. However, I'm aware it has come off licence in the UK and costs £2 per month rather than £90 to our health trusts. I hope it gets cheaper for you too and that there is someone here who can advise on charities.
carsid
Member

Re: Problems getting Exemestane?

Hello, I have been placed on exemestane after having tried Arimidex. I had very bad joint pain after being on Arimidex and switched to exemestane. I had a co-pay of $90 every three months for 90 days worth. This last refill jumped to $430 for 90 days. Apparantly I fell into a donut hole. This tells me that this drug is so expensive it ate up the 'cap'  in my insurance allowance. Is there a card or coupon that can reduce the financial burden? I am on fixed income and had breast cancer. I would like to know if there is any assistance available from the very wealthy drug companies for a struggling cancer surviving senior.

Eliza
Member

Re: Problems getting Exemestane?

Thanks, Linda, and will do. I took tamoxifen with my breakfast, manly because I thought it was the easiest routine to get into, and I plan to do the same with the Aromasin.

I didn't realise it was so expensive either! Don't suppose my GP will be delighted, but my onc said that it is what they always use when switching from tamoxifen.

Eliza xx

Guest
Not applicable

Re: Problems getting Exemestane?

Hi Jan,
Im also a migraine sufferer unfortuneately ,so i can realy sympathise with you, i know how awfull they can be.
Ive had migraines since my late teens , but Pre BC i was quite lucky in that i only had about 2 attacks a yr ,but since BC and treatments i now suffer with migraines at least once a month , a while back i had what my GP called clusters of them for a few mths and was getting migraines 1- 2 a week he thought it could be the Tamoxifen causeing the increase in attacks or possibly the menopause too.
They realy are horrible arnt they, they do get me down sometimes especialy when i get them that regulary, i sometimes wake up with a migraine too, where i have the aura as soon as i open my eyes,i end up pulling the quilt back over my head untill it clears but then have the awfull headache all day tut.

Realy hope the Aromasin doesnt make them any worse , ive been okish so far with headaches so will have to wait and see i quess, but fingers crossed for both of us that any of these SEs will settle down very soon.

You take care too
Love Linda x

Jan
Member

Re: Problems getting Exemestane?

Hi Linda

Yes I knew Aromasin was expensive but not that expensive. That's probably why my GP asked me if I wanted to stay on them when I told him they were difficult to get!!!

My joints have been OK for the last few days but I went swimming. I usually swimm at least twice a week but hadn't been for a while due to family commitments so I might have been stiff because of lack of exercise. I'll swim again tomorrow family permitting.

I'm not lightheaded but I am tired and find myself dozing off in the afternoon if I sit down. I'm getting a lot of headaches though which is not good for me because I have severe migraine. I'm keeping my fingers crossed that this is a passing SE.

I take mine in the morning with breakfast.

The time is coming for me to get a new pack so I'll see what happens this time.

Keep in touch.

Look after yourself

Jan xxx

Guest
Not applicable

Re: Problems getting Exemestane?

Thanks Ladies .
Just did a forum search on Aromasin and found quite a few earlier posts in the (undergoing treatment hormone therapy section), i didnt realise this drug was so expensive (£90 a month) it seems to be the most expensive of the AIs , bet my GP wont be too pleased about that.
Am still feeling a bit light headed and also seem to be tired/sleepy quite a bit ,but no joint pains yet fingers crossed but i guess its still early days for me.
Good luck Eliza with starting the Aromasin ,please let me know how you get on too, i still take mine at night like i did the Tamox but you have to take this one after food tut.

Just picked up mine a few days ago ,so not had any problems getting them so far, i live in cornwall and get mine from superdrug.
Linda x

Eliza
Member

Re: Problems getting Exemestane?

Hello,

I have been switched to exemestane today. I've had thickening of the endometrial lining so told my onc that I wasn't keen to stay on tamoxifen when as I'm post-menopausal there is an alternative. So I took my last tamoxifen this morning and will take the exemestane tomorrow.

I didn't have many SEs with the tamoxifen but the onc said I may have increased sweats and joint pain with this. Just have to wait and see, I suppose.

Eliza xx

AnneG
Member

Re: Problems getting Exemestane?

I have just picked mine up, having requested the repeat prescription early just in case there were problems. I put the request into my GP practice yesterday and picked them up at the local GP Care pharmacy today - also in North Somerset like Jane 75.

I used to be on Arimidex but had a lot of joint pain and was changed to Aromasin. I find it so much better and now worry that it's not doing its job as I'm not feeling the same side effects! No problems with weight either as I have lost 3 and a half stones.

Does anyone know anything about staying on it for more than 5 years -my surgeon mentioned this week that I may need to be on it for 7 years but as I have now been on Arimidex then Aromasin for about 3 years in all, it's still quite a long time before they have to decide.

Anne

Jan
Member

Re: Problems getting Exemestane?

Hi Jane

Thanks for that. I think it must be a local thing. Everyone else seems to be able to get them. I'll investigate with different pharmacies and see which is most reliable. I think it might be that the bigger pharmacies buy stocks in from the manufacturer but the smaller independent ones rely on wholesalers for their supplies and that's where the problem lies.

I had awful side effects on Femara. It made my migraine really bad. Funny how we all have different experiences.

Take care

Jan xx

Jane_75
Member

Re: Problems getting Exemestane?

I was on Aromasin, but changed to Femara becasue of the awful joint pains. Anyway, I live in North Somerset and didnt have a problem getting supplies of it unless I went to Boots. Always had problems there, but a local chemist called GP Care had no problem in getting it. xx

Wizzbaby
Member

Re: Problems getting Exemestane?

Hi Linda

I haven't experienced any different SEs from my Tamoixfen ones. getting and keeping the weight off is a different matter. Why can't they invent a drug to improve will power?

Back to the first question, no problem with obtaining Exe even when the GP's surgery hasn't processed the repeat prescription in time.

love Pauline

Jan
Member

Re: Problems getting Exemestane?

Hi Linda

I started Exemestane on 2nd September so round about the same time as you. I'd been on Tamox for 2 1/2 years too.

My GP gave me a spray for my dry mouth. You are supposed to give it a 2 second burst into your mouth (obviously :-))) ) but it's a bit slimey to be honest so I do 2 x 1 second bursts and that's better. It works really well and is so much better than sipping water. The spray is called Glandosane. I opted for the natural flavour but think I might change to one of the flavours, lemon or mint. The natural has a strange taste with it when you first spray it.

I haven't felt light headed but keep feeling really sick. I have to eat when I'm not feeling sickly but my appetite is affected at present so I really don't feel much like eating. I'm hoping that will pass. From what I can gather it takes a while for the side effects to settle.

On this forum there don't seem to be very many posts about exemestane so I'm hoping that means that it doesn't cause too many problems. Fingers crossed.

Keep well and take care.

Love

Jan xx

Guest
Not applicable

Re: Problems getting Exemestane?

Hi Ladies,
I started Aromasin (Exemestane) about 4 weeks ago after being on Tamoxifen for 2.5 yrs ,just wondered if any of you ladies have felt lightheaded as a SE of Exemestane, i seemed to be ok for the first couple of weeks of starting the tablets but now i feel lightheaded most days and its horrible. am hopeing it will pass as i get used to being on them, but just wondered if anyone else has expierenced this. i also get a dry mouth too .
Thanks
Linda

Jan
Member

Re: Problems getting Exemestane?

Hi Annie

Haven't seen you on here for a day or two. Just wondering if you are OK.

Hugs

Jan xx

charhie
Member

Re: Problems getting Exemestane?

hi again,

before bc i was fit and active no weight probs etc (was 50 at dx 3 yrs ago) since then was on tamox for 2 1/2yrs that was not too bad had a few aches and a bit of tiredness but i could cope, then as new regieme they changed me to exemastane, thought at begining was ok, the joint pains are not nice but again can cope with them, funny you mention a dry mouth , but i have noticed i am always thirsty , my breathing is not good have had ct scan to rule out any thing else, that was fine and now am being checked for asthma which is all new to me, i dont want to change if i can help it and like you have another 2 1/2yrs to go.Have lung function tests tommorrow, it is all making me feel low and always feeling tired. sorry to rant and thanks for listening. hope you stay fit and well .

hugs annie x

Jan
Member

Re: Problems getting Exemestane?

hi Annie

I got my new pack from Lloyds, maybe they are the best bet. I'll see what happens with my usual pharmacist and if I have a problem again I'll see what Lloyds say.

I've just started my second pack so only been on them since the beginning of September. My onc wanted to swap me last February but I was on Nolvadex D and was very happy on them. In spite of them not being manufactured any more my pharmacy had managed to get a number of packs for me. I knew that I would have to change when the supply ran out and that was in July.

I went back onto the generic tamox but quickly became very depressed which happened with them the first time. I had 5 weeks when I had a rest and didn't take anything and then the onc gave me exemestane when I had my hosp appt.

To be honest I'm not too bad at present with SE's but it might be a bit early yet. My joints are a bit stiff especially in the morning and my muscles ache particularly my calf muscles if I walk for any distance. The main problem is that I have a dry mouth but only for the second half of the day. Very strange!!

The doc has given me a spray for that which I'm waiting for at present. Hopefully that will sort that problem out.

Your breathing problems sound unpleasant. Do you have respiratory problems normally or is it just exemestane which has caused it?

I feel that I have to stay on exemestane. I've tried Femara and that aggrevated my migraine. Generic tamox is no good for me as I've said. I've got 2 1/2 years left to do.

Please keep in touch. I would be very interested to hear how you are getting on.

Love Jan xx

Jan
Member

Re: Problems getting Exemestane?

Thanks Lynne

I think I'll probably try my usual pharmacy next time and if they can't get them I'll find a pharmacy which can with no problem.

Jan x

Lynni
Member

Re: Problems getting Exemestane?

Hi

I get mine from Boots, they usually need a days notice. I live in Northumberland.

take care

Lynne

charhie
Member

Re: Problems getting Exemestane?

hi Jan,

Can i just move away from your ealy question and ask how you are getting on with the exemastane, i am finding the joint pains and some breathing problems are begining to get me down, been on it for about 6 months, dont want to change it as it is keeping everything at bay. hope you dont mind me asking. my supplyer by the way is Lloyds chemist.

Annie x

Jan
Member

Re: Problems getting Exemestane?

Hi Annie

Thanks for your reply. As I haven't had any other replies I'm beginning to wonder if it is just the area where I live which is Sheffield. I did manage to get some eventually after ringing round the local pharmacies. It took a few calls before I found some so clearly it isn't just the pharmacy I use regularly which can't get them.

I'll see what happens next time I need some. Could do without the uncertainty though.

Thanks

Jan x

charhie
Member

Re: Problems getting Exemestane?

hi i am on estemastane and have not had any problems getting it, i am in the northamptonshire area.

annie

Jan
Member

Problems getting Exemestane?

Hi everyone

Just a quick question. Is anyone having trouble getting Exemestane (Aromasin). My pharmacist has been trying to get some for me for a week now and no joy. Haven't seen anything posted on here about it and just wondered if anyone has experienced this and if so have they managed to get any and how did they do it?

Thanks

Jan x