Medication shortage?: Hi all. I live in... - PBC Foundation

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Medication shortage?

Sandymh profile image
40 Replies

Hi all.

I live in London and my pharmacy is having problems getting my Urso. To make matters worse, after seeing my Gastro for my routine 4 monthly appointment and being given the prescription for my Colesevelam, the hospital pharmacist was only able to give me one month's supply. He told me they are having a problem getting more and it might be a few weeks before they can get it.

These are the two medications for my PBC and I'm really concerned as to what happens if I am unable to get more when I run out of them in one month.

Is anyone else having this same problem please?

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Sandymh profile image
Sandymh
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40 Replies
Ballymahon2 profile image
Ballymahon2

Thats worrying has this to do with brexit

Sandymh profile image
Sandymh in reply toBallymahon2

I may be wrong, but I suspect it is part of the reason Ballymahon2

iagra profile image
iagra

Are you able to order online from other countries, like Canada or the US?

It may cost more, but, they would be able to tie you up, until your pharmacy has it again.

Sandymh profile image
Sandymh in reply toiagra

Hi iagra.

I live in London UK so we have our NHS. Being a 72 yr old pensioner, we do not have to pay for our medications. I have started looking online though.

iagra profile image
iagra in reply toSandymh

Good luck to you!

Candy12 profile image
Candy12

Coleseveslam is on the list of medicine shortages but according to the attached, supplies should now be available. Is there perhaps one of the others that is still available as you seem new to it.

I didn’t have any problem getting my URSO, but the Bezafibrate 200mg tablets were out of stock so the GP changed the script to the 400mg. Which is better for me as I only take one a day. That’s when I saw the list so I’ve Attached FYI.

sps.nhs.uk/articles/shortag...

Wocket profile image
Wocket in reply toCandy12

I also couldn’t get my bezafibrate in 200 and had to have it changed to 400mg.

Candy12 profile image
Candy12 in reply toWocket

Have you been on it long? I’am getting some dizziness , but only been on it three weeks so hoping it will settle down. Never had any other side affects so 🤞.

Wocket profile image
Wocket in reply toCandy12

We must of started at the same time. I am not getting dizzy. I am getting a lot of acid but that just might be a coincidence. I am just hoping it brings my enzymes down as urso is not doing the trick.

Candy12 profile image
Candy12 in reply toWocket

Let me know how you get on. I don’t get a blood test for 3 months.

Just a thought did your pharmacy tell you to take it with food and separate from the URSO by at least an hour. Not sure if that helps.

I’am seeing the pharmacist later today ( no chance for a GP appointment) to see if taking it at night would help, and or every other day. I need to settle the dizziness I want to be able to drive.

Wocket profile image
Wocket in reply toCandy12

I take mine with my urso as no one said to do otherwise but always take with food. I dont get my bloods done for 6 months but I think Im going to ask gp to do them anyway. Will keep you informed.

in reply toCandy12

Hope your ok? Take care x

Candy12 profile image
Candy12 in reply to

Doing good, just a few side effects nothing to bad. But wouldn’t want it to last to long, I like to be able to drive. Enjoy your holiday. ☀️

Sandymh profile image
Sandymh in reply toCandy12

Thank you Candy12

I've been on 3.75g of Colesevelam (6x625mg tablets daily) since early 2014, so concerned about the consequences if this medication is stopped suddenly.

Candy12 profile image
Candy12 in reply toSandymh

The list said end of July so fingers crossed 🤞.

Sandymh profile image
Sandymh in reply toCandy12

Hope it is only that long for all of us. Thank you Candy12

Hi

My urso by Galen was out of stock a few weeks ago... I can only take a tablet as allergic to the fillers in the capsules. The pharmacist said all gps get a list of out of stock medications which they can use before writing the prescriptions out - however different pharmacists have different suppliers so it probably isn’t easy.

Luckily the gp found a supply of another urso tablet for me which was in stock

It is worrying isn’t it - I always collect my prescriptions long before I need them as there was a manufacturing problem with urso a few years ago...

another option is to use the inline pharmacies that seem to be fairly legitimate- I’ve ordered my sons acne meds from those in the past.

Sandymh profile image
Sandymh in reply to

Hi Louf.

I also had problems getting my Urso a few years ago too as they stopped manufacturing the 200mg coated tablets. Since then I've been prescribed 150mg tablets but not so easy to swallow those as uncoated and stick in my throat. I should also be taking Questran powder but there's been none of that for a year or more now. That's not nice to take but Questran Light is even worse so I've given up on that and take Colesevelam twice instead of once daily to compensate.

I have started looking online to see what's available and costs, but what is annoying, is if some of the medications are available online, why are they not available to our NHS.

butterflyEi profile image
butterflyEi

who.int/medicines/publicati...

This link shows that there has been a shortage of medication world wide for quite some time over a wide range of medications.

Having had a quick look around the web it is fairly evident that it is big pharma manipulating markets for the end game of profit. One article quoted that there are no shortages in large profit making drugs such as viagra.

Of recent my prescription for URSO has been filled using different brands but the pharmacist assures me that they are exactly the same product. Glenmark and Ursofalk.

Candy12 profile image
Candy12 in reply tobutterflyEi

I always take Ursofalk, I don't seem to have a problem at boots. It’s not on the shortage list I posted. I wonder too , if it’s manipulation, and medicines being stockpiled causing a shortage in other places. dreadful situation.

in reply toCandy12

All 3 Boots suppliers were all out of Galen urso... there is definitely something weird going on..

in reply toCandy12

It's interesting that Boots always has Ursofalk. Many of the small private pharmacies often don't have it. It costs a little more than other brands. I'm guessing Boots has a purchasing power that allows it to pay less for Ursofalk than do the small pharmacies.

Mrsfancypants profile image
Mrsfancypants in reply to

Boots in Wood Green London always had probs getting it for me and so did the independent one x

Sandymh profile image
Sandymh in reply tobutterflyEi

Thank you for the link.

mrspeffer profile image
mrspeffer

Morning Everyone....The situation being discussed is all too familiar to me. Nothing puts the depths of fear in me as those two little words "MEDICATION SHORTAGE" I do not use URSO or the other drugs mentioned, however, I use a desiccated thyroid that has major supply issues. I have had a total thyroidectomy, so not having this medication is not an option. I spend way too many hours fretting and searching for the one pharmacy that might have enough to get me through. I could change to the synthetic brand, but I do not do well on it at all. The funny thing is this....no matter how many times this has happened, there always seems to enough to get me through. I spent some time researching the 2 other medications listed in their thread, Colesevelam and Bezafirate. Both appear to be in tablet form. If available in a different strength, would it be possible to cut them? I've had to cut thyroid many times to come up with my perfect strength with zero problems.

As far as the URSO shortage, there is an online pharmacy called ALLDAYCHEMIST.

I just looked and they carry both the tablet and the capsule. I'm not sure what your usual cost is, but this seems reasonable. They do charge a good amount for shipping, so I usually just spend the minimum for free shipping. Would rather get something than pay for shipping!

Wishing you a calm day and hoping you are able to find what you need. Be well...

Sandymh profile image
Sandymh in reply tomrspeffer

Thankyou for your help and information mrspeffer.

KatherineM_PBC profile image
KatherineM_PBC in reply tomrspeffer

I looked on all day chemist but couldn't find URSO. Is it under another name?

mrspeffer profile image
mrspeffer in reply toKatherineM_PBC

Did you put in the full name?

mrspeffer profile image
mrspeffer in reply toKatherineM_PBC

I just looked it up again...put Ursodiol in search box and it came up

KatherineM_PBC profile image
KatherineM_PBC in reply tomrspeffer

Thankyou, this does work but prices are in US$ therefore I imagine it will be shipped from the US and delivery may take a week or 2? Does anyone know of UK sites than can be trusted, can't find any on a quick search!

mrspeffer profile image
mrspeffer in reply toKatherineM_PBC

They are not shipped from US. It usually takes about 2 weeks for me to get their items and if you do not spend enough for free shipping, it will be $25

mrspeffer profile image
mrspeffer in reply tomrspeffer

Just visited their website again...they have a phone number listed for the UK. They are an Indian Pharmacy. So, in the event you cannot source your meds, this is another option.

Angelann69 profile image
Angelann69 in reply toKatherineM_PBC

Ursodiol?

Sue1955V profile image
Sue1955V

I live in Stanmore and am getting it with no problems..... so far! X

KatherineM_PBC profile image
KatherineM_PBC

I live near Heathrow Airport. I gave in my prescription on 6 July and the pharmacy still do not have URSO :-(. If anyone can recommended a U.K. Website for online mess that would be great.

liver-bird profile image
liver-bird

I live in London too and have just collected my medication with no problem. Must be very localised

Mrsfancypants profile image
Mrsfancypants

I had the same problem in London .. mad isn’t it, but they always gave me a smaller dosage of urso ( which means taking even more tablets! ) I’ve moved now and sometimes they struggle here, try and keep an extra supply so you won’t freak out ( like I did ) when they didn’t have any .

It’s annoying that the government changed the amount we receive ( my prescription used to give me 3 months worth, but only a month now..so more annoying and more expense ) you could try a different chemist ? But boots always had a problem getting it, and that was in Wood Green !

I hope you track some down xxxx

Angelann69 profile image
Angelann69

I see that others suggested trying the US for help with drug shortages. Nope, not here. I've been on Morphine for 12 yrs and last month they ran out. My insurance company is one of the biggies and found me a pharmacy that would cover but this is so scary. Thank Trump. Idiot

KatherineM_PBC profile image
KatherineM_PBC

Hi all I was in the same position and local chemist said they were shortage of 150 tablets. But after making enquiries it seems there is no national shortage of 300 tablets so get your GP to re-write your prescription as there is no shortage of the 300

Sandymh profile image
Sandymh in reply toKatherineM_PBC

Thank you Katherine

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