Penicillamine: Hi is anybody having... - Cystinuria Support

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Penicillamine

CoCo-balls profile image
8 Replies

Hi is anybody having trouble getting penicillamine ?

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CoCo-balls
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8 Replies
CrAzYcRiPpLe profile image
CrAzYcRiPpLe

Good moaning to u🤪well, it iz here lol, a couple of months ago I asked the same question but it seemed that I was the only one unable to get the 250mg size.

I was given the 125mg as replacements but it just increases the amount of meds I have to shovel in....BUT on Tue I got a massage(😂😂)from my dr saying that I had to get in touch with my specialist and ask for something different as Penecillamine isn’t availabubble.....😳😳🙄🙄sooooo......:seems I was right but wrong at the same time.. duno what I’m going to do yet as I got sooooo fed up with my DRS not even bothering to read any of my notes that I gave up going. Just got too much and when one of them asked “is this your first stone?” even tho there was over 25yrs of notes from guys in front of her..........If the medication isnt availabubble by the time I get short then I’ll have to ask but until then...

I hope u hava painfree day+God bless you👍😇😜🤪

bertrussell profile image
bertrussell

Hi had to change to 250mg instead of 125 but that’s not really an issue. Try phoning the manufacturers direct I have done that a number of times when there has been an issue. You are right there is no alternative to penacillamine which I have been in for more than 50 years.

CoCo-balls profile image
CoCo-balls in reply tobertrussell

Have you got the telephone number to the manufactures please

Many Thanks

Dawn

APdesigns profile image
APdesigns

I have for years taken 250mg pencillamine tablets until about 18 months ago. Was told they had stopped 250mg and had to have 125mg. They were out of stock but my consultant got me some from a hospital. Three times now I have had trouble getting them. 2weeks ago I was told 'out of stock' and don't know when back in!!! Then they found some 250mg ones so after a wait I was given them. 250mg seems to be back and 125mg not now available. Always worry when they say they can't get them.

MattBultitude profile image
MattBultitudeAdministrator

Hi All. I have checked with our pharmacy at Guys Hospital for the latest on availability. Certainly there are shortages and some companies are out-of-stock of various strengths - but some do have low stocks of others. So it will depend what manufacturer your individual pharmacy gets it’s stock from.

So at the moment there are issues with supply across the UK but if pharmacies contact other suppliers than their usual ones then they should be able to get hold of some.

Clearly this situation can change as stock is used up if manufacturing delays continue.

CoCo-balls profile image
CoCo-balls in reply toMattBultitude

Thank you

CoCo-balls profile image
CoCo-balls

Cannot get any penicillamine any where. Only have one week worth of tablets left.

Jasper2019 profile image
Jasper2019

Hi. I got my supply of 250mg tablets last week and asked my pharmacist where he was getting them to pass on to the group. They have a central warehouse and they looked on line for me and there were none in the warehouse and there was a supplier issue.

I pray every time I go to pick them up and so far my prayers have been answered. I try to keep a month in advance in case there is delay. My GP was up for that.

Best wishes.

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