Penicillamine

[Tkirrage]

Been to picked up my normal prescription today, to be told it had been rejected by the doctor as needed a urine test. which I dont mind doing but when was this information going to be pass on. it now looks like I have to have a blood test every 4 weeks and urine test everytime I need prescription. Is this normal for everyone taking Penicillamine.

[CrAzYcRiPpLe]

Lo matey, Ive been on penicillamine for so long that I cant remember when I started!

I have never had to have a urine test(not that I’m aware of) because of being on it. The only problem I’m having atm is the dosage size available. My chemist can’t get my usual dosage and has only been able to get me 125mg instead of 250mg’s....

I hope and pray you manage to sort this out, after all living with this awful disease is hard enough without someone trying to add their ten pence worth! I’d go back to the dr and ask if the chemist is just trying to be nice or just bloody minded! Also IF you do actually need to have this test, if not then perhaps he could contact the chemist and tell him exactly what to do 😂

Have a good painfree day✌️

8.15am bit later than last one🤔🤪

Thinking about it, I vaguely remember having to have urine tested but that stopped after a while, my carer(ex-wife😲😂) who was here while replying said she remembers me having to go thru a spate of urine testing but cant remember for how long, then the requests just suddenly stopped.... again I vaguely remember reading that they do these tests to make sure your body can actually cope and deal with this chemical without causing a chemical build up of something or another...

I’m sorry to be vague but I have to take soooo much medication that I sometimes struggle remembering all the thousands of articles etc that I have read, watched, looked at etc🙄😂🤔🤤🥴🤪over the years.

Hava great day 💊💉💊💉lol

[bertrussell]

I have 3 monthly urine and blood tests and have done for a number of years plus a yearly review at Drs of all medication and also reviewed at Hospital visits which are 6. Monthly.

As to 250mg penicillamine not been able to get that size for about 18 months to 2 years. I was told no longer manufactured in that size.

I see blood and urine tests as part of managing cystinuria.

[Tkirrage in reply to bertrussell]

I have blood test done twice a year and test at guys hospital. as I have been on them over 10 years. just don't know why it has change without commuication. thanks

[Rosepyc]

I wonder if they do urine tests for other conditions treated with penicillamine? Hope you get some answers. Would be interested to know if urine tests are needed.

As for the 250mg, I've been getting it ok on a monthly basis for my son from Boots and hospital at 6 monthly clinics (Manchester Childrens). Had an issue with potassium citrate a few months ago.

[Tkirrage]

Thank you, I do get the right dosage of 250g no issuse in getting them, will keep you all posted,

[Jasper2019]

Hi. My doctor will not let me have my penicillamine without a blood test and sometimes a urine test.

[Tkirrage]

Dont mind doing this its just the lack of communication from the GP, I have been on these tablets for over 12 years so why know.

[coal1]

Your GP has a duty to perform 3 monthly blood tests and a urine test to check that the penicillamine is not doing you any harm.

Penicillamine is a life saver for cystinurics but can potentially cause a reduction of your white cells and liver function. The BNF ( British National Formulary) states what monitoring is required. This is available for everyone to view.

If your GP does not do these tests and they get a visit from the CQC they have to give a good reason why he is still prescribing without appropriate monitoring and the surgery can be placed under scrutiny as a result of lack of monitoring.

More importantly it is good practice and a protection to us patients that these tests are done.

I hate having to do them but I still do as like you I depend on penicillamine and it has served me well over several years.

In answer to the question regarding availability. I always ask for my prescription to be printed rather than sent electronically and that way I can check which pharmacy is able to issue. Pharmacies have different suppliers and you will eventually hit lucky with one. That’s what I did when I recently had problems with supplies.

Hope that helps.