Availability of Megestrol(Megace) Progestrone hormone

Hey there McLeod

I'm sorry you're having issues getting your prescription at the moment. 

I was wondering, do you know why you were prescribed Megestrol? The reason I ask is that that isn't usually what's prescribed at the stage you're at. Megestrol is usually used for advanced womb cancer or a recurrence. It's usually medroxyprogesterone that's prescribed as hormone therapy after an initial diagnosis.

So that might be an option when you speak to the doctor, to switch medication if there's no reason for you to be on Megestrol specifically. 

Good luck calling the doctor! Let us know how it goes! 

Lass

Xx

Hello Lass, 

Apologies for the delay in replying, just finding my way round the site.  The consultant said at the moment she wouldn’t be happy to do any surgery due to the Coronavirus plus I have had a number of ops in connection with an ileostomy carried out my twenties, gall bladder removed and ovarian cysts in later years. MRI and CT.scan shows the womb is “stuck” down Consideration for surgery would be in three months. A Mirena coil was tried as this was preferential but my womb was too short so the hormone was prescribed orally.  My understanding is that the hormone is to try and slow things down until I can be considered for surgery.   From trying to make myself informed about treatments I also have read Megestrol is used for more advanced stages. 
Thanks for replying.  Its good to know you are all there.

Hi McLeod,

I’ve been taking Megace for about 18 mths now and have recently encountered the very same issue. I’m so lucky that my best friend is very well connected in the pharmaceutical world and she recently found out that the manufacturer of Megace has changed. There are 2 pharmaceutical wholesalers who have stock (AAH and Phoenix). Unfortunately Boots don’t use either of these suppliers, so you’ll need to change your nominated pharmacy to either a Lloyd’s pharmacy or a Rowlands pharmacy. I’m lucky as my local Sainsburys has a Lloyd’s counter. 

Just to give you a bit of hope, I’ve got an inoperable 3cm mass in my right pelvic wall. I also had a raised dodgy lymph node in not a very pleasant area! Megace has shrunk my lymph node so it’s no longer classed as being significant and my mass hasn’t grown either. I really do hope you have good results with Megace too.

Good luck with getting your prescription fulfilled.

Liz x

Hi McLeod,

I don't know if the following helps at all.

About two years ago my husband went to Morrisons chemist as usual for his eye drops. He was told they couldn't get them. The hospital was furious and said that was no excuse!! He decided to try a little local chemist - Everetts. (Don't know if they are nationwide - we are on the South coast)They have sourced the drops ever since, no problem!!! It might be worth you looking around.

However, in this crisis we have been told we can't collect a paper prescription, but have to nominate a chemist to dispense our tablets. Not sure if this might hinder you if its the same everywhere. Good luck. xxx 

If Lloyd's might have it then I'd highly recommend downloading the Echo app. You order all your meds through it, and then they come in the post. 

Lass

Xx

Many thanks, Boots and the other chemist both used the same wholesaler.  I will try Lloyd’s.

Thank you for sharing your own experience as well, it helps to know that the treatments do have a positive effect.  There is a lot to take in at the moment.  Thank you to everyone who replied.

Best Wishes

Hello everyone, not sure if you can reply to your own post but here goes.  Just to let you know that I contacted the Macmillan Clinical nurse team at the hospital and the wonderful nurse arranged for me to pick up the prescription for Megace at the hospital.  I was relieved as had tried three other chemists Lloyd and two independent smaller chemists with no luck.  Thank you for your support and suggestions.  

Best wishes to you all

Mcleod

Hello Liz,

I have been taking Megace now since the 14 April a short time I know, As you have been on it for 18 months with success I wondered if you were recommended to wear anti embolic, compression stockings.  Thanks

McLeod

Hello McLeod,

No, no one recommended the wearing of compressions to me, but I do understand your train of thought. When I read the medication leaflet, I went into a mini meltdown, which is something I don’t normally do. From memory, I think there’s more than a 1 in 10 risk of having a DVT in your lung and more than 1 in 100 chance of having a heart attack.

The more I read about the side effects, the more I convinced myself that I needed to take blood thinners! I spoke to my GP about it and he reassured me that I didn't need to take any additional meds as I’m still active. The same applies to wearing compression stockings. If you don’t have any mobility problems, you should be fine, but please have a chat with your own GP if you’re still concerned.

Oh before I forget, my local Lloyd’s pharmacy we’re unable to fulfill my prescription too. Luckily I’ve got a 2 month reserve stash! According to the pharmacist, it’s due back in stock on the 1st May, so fingers crossed.

Take care x

Thanks Liz,

Yes I have been reading the leaflet avidly.  I don’t have mobility problems but Just at minute I don’t seem to have much energy and Started to worry about clots etc.

The hospital pharmacy is actually a Lloyd’s so although I couldn’t get Megace at a local Lloyd’s it was dispensed there.  I will make sure not to run too low if I have to reorder.

Hope you and yours are well.

Thanks again

McLeod