Problems with getting Lupus medication

[SLE-Warrior]

Hi - I hope everyone is doing well

I am based in London. I had my routine rheumatology on Tuesday and received my normal prescription for azathioprine and prednisolone. Once, I got to the chemist I only received one package of each. I normally get enough to last me for 3 months until my next appointment.

I normally get my medication delivered, I called my GP surgery and I asked why haven't my other medications been verified such as hydroxychloroquine, Vitamin D and Iron tablets. I was questioned that I should have more Vitamin D tablets which I do not. It seems to me they are either restricting amount of medications you are allowed to have or lupus medications are running low.

Is anyone else having problems with getting their medication?

[Londongigi]

Hi SLE Warrior, i also live in London and i have had no problems getting my regular medications, i've just collected my latest meds today from my pharmacy.

[Chris21]

Hi SLE-Warrior, I’m in Essex quite often when I put my prescription in (monthly) they haven’t got it all in and have to order which usually is in by the next day, very frustrating having to go back. I now ring ahead to make sure they have it all there ready for collection. Did you ask the pharmacist why it was reduced?

[Potatoheat]

My 2 monthly pickup is due soon. Had no problems last time . Sometimes have to go back for a top up because they don't have enough. Hope you get sorted soon.

[Sarahmac8312]

maybe it is because of either the fuel or corona virus

[Barbara17]

Hello. Since the start of the pandemic I can only get one month’s supply at a time. This has caused a huge backlog as everyone now has a bigger workload so actually getting the medication can take nearly three weeks. When it is time to reorder everything ……….. I have pointed out that this system is not helping anyone and simply causing more work and I have been told it is now Health Board policy and there’s nothing they can do about it! A case of making a rod for your own back?

[PositiveT]

Hello SLE - Warrior. Hope you are ok. I live in Hampshire and have not had any problems with my prescription so far. I have only collected one from the chemist as my shared care agreement between hospital and G.P. has only recently been agreed. Hope you don't have any problems in the future.🤞🌻

[Poshcards in reply to PositiveT]

hi, I have been waiting over 6 years for my shared care agreement, leicestershire council will not agree to it! x

[Poshcards]

My GP only lets me have 4 weeks at a time of any of my meds, yet my rheumy consultant sends me my metho injections prescription for 3 months at a time! crazy!!

[PositiveT in reply to Poshcards]

Morning. This really isn't fair on you at all. Nor does it help the hospital. Have you considered talking to the Leicestershire health authority about it? Maybe it's time to complain? I had to complain to Hampshire once three years ago about them refusing to do hospital bloods at GP's. I was very surprised by the result as the lady who dealt with my complaint agreed with me and got it overturned so all patients can now get bloods at GP's again. Worth a try? Best of luck and stay well. X🌻

[SLE-Warrior]

I wasn't really sure why this has happening. Normally I am able to get 3 months worth medication until my next appointment. The fact I only one pack for all medications was strange.

[bluebell99]

My husband collects my meds from the chemist and is often infuriated to find only one item, even though he has the texts from them to say they are ready.

Most collections involve five or six different meds, sometimes in sync, other times not, depending on the amount prescribed daily. Why are some meds prescribed "taken when required", also some 28 days and others 30 or 56 days?

We have also had problems when the chemist has said they have not received the prescriptions when meds like morphine are missing. then it is a fight between the health centre and the chemist and trying to prove who is responsible for the omission. All very stressful considering it is a controlled drug, and there have been times when it has been collected but not by my husband. Hard to prove but fortunately the signatures in the book were nothing like his.

The explanation given for the missing meds is that they are distributed from a central depot and have to be ordered by the chemist themselves when they get the prescription It is only the ordinary ones like Gaviscon, Lactulose and paracetamol which are generally kept at the chemist.

My chemist is one of the two major companies, not an independant so I have little choice.

It has been like this for well over a year or more and I don't think driver/fuel shortages are the reason.

We now ring to make sure all the items are there, I think it prompts them to chase it all up!

[Bakbre]

Lucky you normally getting a 3 months supply. I am restricted to just 1 month at a time. I was diagnosed in 2004 and that’s the way it’s always been. I have queried it often but am always told “no, we do not give out more than 1 month at a time to anyone”.

After speaking once to an ex receptionist, she told me it’s because of the cost as you could build up a stock then either leave the practice or die, which would be a complete waste of money!

I don’t think there is any shortage but it is just practices trying to save money.

[Paprika60]

I too used to get monthly but have written to the prescription dept. at my GP surgery explaining the long term element of my condition so she now allows two months. I believe the monthly allowance is due to being cautious and less wasteful when trying a new medication and if it doesn't work well. Too many medicines are often wasted and after all it all comes from tax payers, all of us. If you are on these medication and supplements long term, it could work if you communicate with your doctor first. Hope it works out well for you.