Lefluomid

[Carolsos]

Hi guys I ordered my prescription online and found they had taken lefluomid of the list. I rang up my surgery and waited for 30 minutes to be told you can no longer order meds on phone. I asked what has happened to my lefluomid and why is it off my repeats? She didn't know and ordered it for me, that was on November. Thinking everything was ok I ordered December meds to find no lefluomid once again. I went into drs to ask about why is it not getting ordered. Receptionist had no clue, but requested it anyway. So I went into drs again to order it and still no explanation as to why I can't order it. Until finally a letter arrived from my Dr saying I cannot ring up to order and I cannot have repeat, but can go into Dr and order . Absolutely waste of time having to go into the doctor's for some med! The whole point of ordering online is wasted!!! So January comes around and order online everything except lefluomid then a trip to drs to order and pick med up 6 days later to only find all my other meds have been cancelled and lefluomid is there. Omg so annoying, so once again go back into reception to ask where are the rest of my meds??she ordered them and had to wait another 5 days. In the meantime got a call from reception from a doctor asking why do I need a script for lefluomid as I have not been requesting it!! I said I have it every day and I never miss a doze unless you mix my script up and the reason I can't get repeat is because it's a dangerous drug and I am not allowed to have it on repeat and I should NEVER have had it on repeat!!! I didn't put it on repeat the drs did that all by themselves. Now my bloods are 3 monthly it's like getting blood from a stone now So every month now I have to go onto the drs to order my meds and now I don't ring up for my script. So it took from October to finally get an answer. Sorry for the long rant. Has anyone else had this happen to them?

Thank, take care everyone 😊

[nomoreheels]

How odd… not to say annoying, & repetitive! What I’d do Carol is ask your GP (or Practice Manager) to check back on your records & he'll find the letter from your Rheumy requesting he prescribes leflunomide for you. That should solve the problem & reinstate it to your repeat script list. Why it had been taken off in the first place is the odd thing. I take it you hadn't discussed it being changed for another DMARD with your Rheumy? It might seem a daft question but the whole thing is isn't it!?

[Carolsos in reply to nomoreheels]

I am seeing my rumey consultant in a few weeks so I will ask him what is going on. The receptionist said it's because it's a dmard drug, which I knew it was. Yes she did say it is a dangerous drug. I have been on it 5 years now and I think we all know we are on dangerous drugs and if we have to take them we expect to be able to get hold of the drugs. I may have to get lefluomid from the hospital instead. I will let you know what happens. Thank you.

[nomoreheels in reply to Carolsos]

Well that's fortunate, you'll be able to ask him in person.

[Legley in reply to Carolsos]

CarolAs you said we all know its a dangerous drug but we are allowed it on repeat prescription . You shouldnt need to go to surgery mthly. I use to be a receptionist at a surgery and we were allowed dmards on repeat.

Hope you get it sorted quickly spk to practice manager as sounds like mis communication between dr and receptionist xx

[lucymead]

Hi , I think you may find that meds are changing due to NHS AUDITORS looking at dangerous drugs in NHS. I used to get my specialist drugs from GP. I now have to travel to hospital Pharmacy in town.

[Duster1979]

My gp refused to prescribe lef, said it was on "red list". Hospital not happy so put it on my record as not effective and I qualified for Benepali as 3rd failure of DMARD!!!

[Carolsos in reply to Duster1979]

I take humeria , lefluomid and hcq. Codeine and naproxen. I have been on humeria since August and am still in pain some days and in the morning I can hardly close my hands with the swelling and pain. I also have a lot of shoulder pain. I hope I can stay on this, but maybe something else added on but don't know what! Thank you

[Mmrr]

My leflunomide is on repeat prescription, I get 3 months supply at a time. I order online, never had any problems.

[cathie in reply to Mmrr]

I get the same never any problem. Edinburgh

[sylvi]

No i haven't and it is sad that you have to go through this every month. Lets hope things settle down now. We order our drugs from the hub/pod whatevery you want to call it. We ring up and our drugs and then we get them from our chemist in the next day if they have got it sent through to them on the same day. xxxx

[ruth_p]

That’s ridiculous! I think a strongly worded letter from your rheumatologist might be in need.

[vonniesims]

How frustrating. This sounds like a GP problem rather than hosp. Speak to your practice manager, Good luck

[marie66]

I had the same issues with all DMARDS. GP classes them as an active prescription and not repeat although they do allow me to phone a request after my bloods are done. Apparently they check all levels before further prescribing every month. M x

[Carolsos]

Thank you for all your replies and I will let you know how I get on hopefully.