Anyone else have issues getting Mycophenalate Mofetil on prescription from GP?

I have been on MMF for 7 months and had no issues getting my medication from my GP as directed by my renal consultant. I have now changed GPs as I moved house and he told me that he can't prescribe it and I need to get the medication from hospital, which is a pain for me. Has anyone else had this issue?

22 Replies

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  • My GP has never been able to prescribe MMF so mine always comes from the hospital all I do is ring my Rheumy's secretary tell her what I want and she sorts it all out with consultant and the pharmacy at the hospital post the drugs out to me I usually get 2 moths supply at a time.

  • Yes, I'm the same, my GP can't prescribe it because the drug contract he's got with the NHS, so I have to get it privately because I consult my rheumatologist privately. If you see your rheumatologist through NHS, then his/her hospital will be able to prescribe it.

  • I get mine from hospital. I get 6 months worth and blood slips to monitor my levels.

  • How often should blood tests be done on mmf?

  • I get mine done monthly. I have low platelets so thy check those but I also have liver function tested as that can be a side effect.

  • In my case the blood requirement was monthly for the first 3 months then quarterly - unless anything suspicious is identified. As an aside, where is all my blood going? Every time I see anyone in the medical profession I end up giving up to 9 vials of blood and normally receive no or minimal feedback. Is the NHS a secret sponsor of Dracula Ltd.?

  • Same here, I was on MMF for around 4 months and my GP did not prescribe - I always had to have it prescribed by rheumy and dispensed at the hospital pharmacy - a bit of a pain but maybe you could make similar arrangements to others who have replied. All the best.

  • I have never been able to get MMF through my GP, they say that that they are not registered to prescribe it for Lupus, so my rheumy prescribes it at my hospital which I have to collect 10 miles away every 3 months.

  • Hi

    I suppose at the end of the day it depends on the clinician being happy to take responsibility for his/her actions and knowing that they have the specialist knowledge to use this drug and the follow up needed. If they where to do something wrong we would be the first to complain and take them to court. I personally am happy on my day off to do a 30 mile trip today just for bloods if I know I am being reviewed by a specialist team. I trust my General Practitioner but he cannot specialise, possibly take more interest in one or two ares of medicine. I know I can't. I know a bit about a lot of the things I see the most. I too will say no when asked to do something out of my competency and knowledge. It's taken too long, too many hours training and studying and I don't get paid enough. And I definitely couldn't cope with being taken to court.

  • As Purpletop says the Gp prescribes within the nhs contract. And each Gp has guidelines and targets they have to follow. It's not necessarily in there control

  • I have the same problem with mercaptopurine. The GP says it is because they "cannot monitor it", but this is ridiculous as they do my blood tests and my consultant has told me how to monitor the results myself and contact him if anything is awry (and I am not a medical doctor). My consultant says it is ridiculous and that his other patients on this drug receive it from their GPs without any problem. My pharmacisit says it is all about cost, that my GP's surgery have chosen not to have a contract for this drug as it is more expensive than azathioprine, which other suffers can tolerate. My daughter has the same problem with modafinil (she has narcolepsy), my neighbour the same problem with methotrexate (she has arthritis). We all have to waste NHS administrative time, consultant's time and our own time going to the hospital every 3 months (the consultants won't prescribe for more than 3 months at a time) when our GP could easily prescribe these drugs but will not do so because of the budget and contracts they have chosen at their practice. How can any of this make sense? We should be able to appeal against this nonsense. If anyone knows how we can, please let me know.

  • I'm sorry that you are sick of the realities of the NHS . Having worked in it for 28 years I have seen a lot of changes. It is actually hard to read a lot of the posts on here. There are a lot of differences between areas and what is on the formulary.

    I don't know people who go in to nursing or medicine who don't care about the people they see. Every person has an effect on their nurse or doctor and they do care but they are not the bosses, that's higher up. The workload has increased beyond our means so that we really need more staff. The work has come from the out patient appointments that you ARE now able to have at your Gp surgery. COPD reviews, asthma, chd, prostatic cancer injections and reviews, blood reviews for certain DMARD drugs. There has been no more money to put these surgeries on. Just a demand that we work longer hours and more days! You can now see your practice nurse at 6:30 for a COPD review unlike when it had to be done at the hospital!

    I have just done a 15 mile return journey so that I remain in the care of my rheumatologist and I don't mind because If I need to see her I just ring up. I could go to my GP but i dont think his background was in rheumatology and I would have to get monthly scripts, and try and get an appointment in a busy blood clinic. Also if i needed to see the rheumatologist I'd have to be referred, according to the nurse specialist, but this way I just contact her.

    And Bitternwatcher, I don't feel competent at sorting my patients bloods out yet but then if I make a mistake I have a very stressful assessment of wether I am fit to work, even court brought against me if I miss something. Being a professional means a big difference on what you feel you can and can't do without experience.

    Sorry about my rant but the job is a thankless one these days with more pressure to take on roles your not ready for and an unreal expectation of knowledge and ability

  • Actually it 15 miles there so 30 miles

  • Thank you for this, I'm sorry I must have annoyed you as you are at the other end of these things, but the more I experience of the NHS the more inefficiency I see and the more mismanagement despite an explosion in the number of "managers". I know that none of this is the fault of doctors. I have two daughters who work at the coal face in the NHS so I do hear things from the other side and I understand your frustration.

  • Thank you for you reply. I think I was ranting a bit wasn't I. And really I have to agree in many ways with you. There are so many things that are falling apart. Too much paperwork and less time with patients. It's very frustrating especially when they change governments. I feel they all want to keep a well paid job but forget what actually maters and that's the time and money as you say at the coal face. X

  • Well quite. I teach in a university and have the same frustrations. In fact I'm so frustrated I'd like to retire on grounds of ill health, but I'm not deemed ill enough so they won't let me

  • It is a shame that you feel that way but again I get it. Some days I enjoy my job and I love to see the patients especially the ones I've known for years. But I'm feeling tired with this thing we have. I am too slow and end up missing my breaks. At times the foggy head has been too bad to work. But because it comes and goes. Because I'm mobile etc etc I doubt I'd be able to leave either. I feel my next 14 years will be working and sleeping at this rate.

  • I stay north of the border, the shared care of meds such as MMF isn't such an issue as we have less of an internal market and GP's on different contracts than England. Also I think the price of meds is worked out across the health board area, not from practice to practice.

    After 24 yrs at the NHS coal face things have indeed changed. You are right about the burden of documentation. It is all defensive, I can be with my patients preventing falls or sitting in the office documenting a falls care plan, ticking boxes. The only time anyone looks at the reams of forms is when there is an adverse incident.

    Care has become much more complex and time consuming due to an ageing population with multiple co morbidities. I love my job but being a patient has been eye opening!

  • I count my blessings, I have been on Mycophenolate for over a year now and get my repeat prescriptions from the GP. The surgery also does monthly blood tests for fbc, u & e, lft and ESR.

  • Thanks for replies

    I spoke to my consultant and he gave me a prescription for 2 months.

  • I get my MM prescribed by my consultant and pick it up from hospital pharmacy. I have bloods every month or so. x

  • This seems very strange, having being prescribed MMF by the rhuemy. My GP generated the prescription as she would any other. She, my GP, thought my local chemist may not hold MMF in stock - in the event their was no problem at all. I have a repeat prescription and there are no problems at all.

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