I was taken off mxt two months ago to start leflunomide and the nurse told me on the phone you cant get a repeat perscription from the doctors for this drug as its a hospital perscription and said she would send a new one to boots pharmacy for me i went to collect a week later and they said there was nothing that had been sent through for me so ive rung up the hospital and they kept sending me to diff numbers which every single one said we cant deal with it and im pretty sure one of the nurses i spoke to was the one who didnt send my perscription through it sounded just like her, i was given another number to call ( the advice line) which is only open from 9-12 so ive had to wait till today my day off to call as i work during those opening times i was on 5th in queue for nearly 20 mins ive had to hang up and try again i was just wondering if anyone is on leflunomide and if you have this much trouble in just getting a repeat perscription for it? I run out in 5 days and just feel its been a lot of effort of going number to number for it and on the advice line it says they may not answer and if they dont they will get back in 24-48 hours
Leflunomide: I was taken off mxt two months ago to... - NRAS
Leflunomide
Well my GP prescribed it for many years no problem, so it could be different in your area health authority or the nurse is wrong. Ring GP and ask ? or could it be until you're established and had the first few months done and all bloods proved ok that the hospital doesn't send instruction to GP.
Yeah i thought maybe its because im still new to it so my gp cant have it yet but the nurse never said that when she asked if i had enough i said for now yes once im close to running out ill go to the gp she just responded with no you cant do that this is a hospital drug it has to be prescribed by us. Im hoping she is wrong and it is just because im new to it so have to wait a few months otherwise it will be a nightmare ringing all these numbers every month haha
Hi I was on Leflunomide and MTX but my gp wouldn't prescribe my leflunomide as they needed an additional shared care agreement for it. I would ask your hospital to make sure they have sent this and that your GP has requested it. I was piggy in the middle between my hospital and gp so I know exactly how you feel, it is so frustrating. My advice would be to keep phoning, leaving messages it is the only I could get through. Good luck with it.
Unless less things have changed Lfl is usually given under Shared Care…ie your rheumatologist prescribes it…but your GP issues the prescriptions.When I was on it my GP at first refused & I had to pay for it….but after my rheumy
had a word with him it worked out OK.
Have a word with Rheumatology department secretary I’m sure she comes across this situation a lot of times.
Yeah i think i may have a word with them as they only seem to give me the option now of having it sent to a boots pharmacy even tho my first one was sent to my home address for me to take to which ever pharmacy was easiest for me and the boots is opposite end to where i live and work. I was used to having all my meds just go through my gp so wasnt 100% on whether this was the normal for this drug as i hadnt been given the info that it was a drug that needed to go through the hospital. Thanks for your reply
Having started lef on a couple of separate occasions, the first three months have always had to come from the hospital directly. They’ll only do the script if my bloods are up to date and visible on their system. Once I’ve had the first three months, the prescribing has then been transferred to the GP under a shared care agreement to be issued by the pharmacy that deals with all my other medication.
I would contact the nurse specialists and get them to clarify the situation so you know what should be happening, and so they can do any legwork required. Dealing with these kind of issues is very much their job.
Thank you for your reply. Yeh i wasnt told anything on my first call with her when she was telling me about the drug so i automatically assumed it just went through my gp like some of my others do it wasnt until the second call when i asked that she told me. Luckily theyve now been sent through and have been given a couple of months worth by the looks of it so should be ok for now but will be defiantly mentioning it all to her when she next calls as well as to my consultant when i next see him as its been a bit of a faff being sent from number to number just to get it sorted. Now ive had more info from people on here ill now know how it all works with this certain tablet
No problems here . I get mine with my blister packs separately. They can put them in the packs as they need to be straight but I get a bottle with my repeats. I'm sorry you are having this trouble. I wouldn't say it was a known problem so I think your consultant/ nurse from your hospital need to inform your GP or practice manager and they have to enable you to get the repeat prescription . Good luck , annoying for you
I'm on shared care for my Hydroxychloroquin so get that through the GP. However, my local authority doesn't permit GPs to prescribe Metoject (although they can prescribe Methotrexate tablets) so I have to get that from the hospital pharmacy. Now that I'm on Sulphasalzine as well, the consultant originally offered to pass that over to the GP but apparently it's not allowed as the blood tests for both are arranged together by the hospital team and their systems don't "talk" to each other 🙄 I have to ring the rhemy nurse prescription line and then the hospital pharmacy rings when it's ready for collection. Of course, the 2 medications are out of sync and the hospital is an hour's round trip.... They did post things during lockdown and sometimes do now when I ask but not always. Luckily I have a car and don't work full-time but I pity those who aren't as lucky.
Ring gp.ive been in ut fir 15 yrs...easy on repeat orescription mo problems at all. The gp will know uou have been prescrubed it.good luck
My first leflunomide prescription came from the hospital, thereafter my GP prescribes. I have had no problems. I'm in Scotland.
No issues at all in getting this medication through my doctor . I get it in repeat and have done for 4 yrs now. I would go to your doctor and enquire.Hope you get med soon as l find it brilliant.
I am having issues getting the Specialist RN to return a pc. It’s so frustrating…waiting for months to start a med is totally unacceptable, in my humble opinion. Communication is a massive problem. In the meantime we are left to manage our disease as best we can. Hope you get it sorted out.
Sorry to hear that you are having such a frustrating time trying to get a prescription sorted out. I had a very similar experience a couple of years ago with methotrexate. I've been on leflunomide since last July and initially the prescriptions had to come from the consultant and then, once I was settled on it, I was put over to shared care which means that the GP is able to do repeat prescriptions (for the dosage decided by the consultant). I hope that helps and that you are soon able to get your tablets.
I’m not on that drug … yet… but the constant to and froing between hospitals, pharmacies and GP is very exhausting and actually is the main reason why it’s taken me so long to find a suitable treatment. I suffer from terrible fatigue and the whole system together with waiting on the phone for so long is too much and I just give up! I hope you get it sorted soon x
No different to any of my meds my GP Practice prescribed LEF for me. They had signed a shared care agreement from the off though, could that be the difference for you, or do you have any of your other meds on repeat prescription for yours? It was my Rheumy who was the initial prescriber of course but my first prescription was sent through to my Practice who added it to my repeats list.
All I can think may be happening is your Rheumy is taking responsibility for you until you've been on it a while & proved to be ok, maybe the first 6 weeks, then will relinquish that responsibility to your GP. Or, if prescribing is handed over to your Practice your GP will obviously have to accept clinical responsibility for it, & you, while ever you remain on it. If he's not confident doing that then the only option is the hospital prescribing it.
Where are you having your drug monitoring bloods done out of interest? In line with any other new DMARD I had my bloods done at the Practice, fortnightly for the first 6 weeks, then, at the time, monthly thereafter. The only difference was my BP had to be taken at each blood test as LEF can raise your BP. It did mine & my BP is normally bob on, but it did settle back to normal the longer I stayed on it. I did have to come off it unfortunately, although it was no great loss to be honest.
HiI'm sorry to hear you're having such problems getting it. I've been on it for years now and initially it was prescribed by the specialist but now it comes via the surgery. I've had no problems whatsoever with getting it from any chemist either. I'm based in SW London. I'd call or email your Specialist's secretary and this checked out. Good luck.
I think different NHS trusts work differently. My leflunomide is prescribed by the hospital. I email the rheumatology prescription email address and a prescription is sent to me which I take the local pharmacy.
Hi emma88, I was on Leflunamide for about 7 years (until just over a year ago) and it was always prescribed thru the GP surgery - that's here in Wales. Not sure if it varies across different areas. Terrible you've had such problems...do hope things can be sorted so you don't have to worry. Take care 
I've been taking Leflunamide for over 10 years and I get a repeat prescription through my GP.
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