Prednisolone taken off repeats; “it’s an acute drug”, despite dose greater than 7.5mg for over 10 years

[Cathyan]

I noticed my GP surgery have taken my prednisolone off my repeat medication list “because I’m supposed to be reducing it and it’s an acute drug “. I feel extremely vulnerable now as I’ve been on it for 15 years on top of all my other Lupus meds and obviously would have an adrenal crisis if it was stopped. It feels unsafe that it’s not listed as a repeat if anyone needed to check my list of meds in an acute situation. Does anyone know if there’s a new policy about it, or, alternatively, any guidelines saying this shouldn’t be done? I’m planning to tackle the practice pharmacist.

[Cathyan]

BTW I was told by the medication team I would always be given it when I asked for more but as an acute drug .

[PMRpro]

But we who need it as a chronic drug CAN'T be told it is "an acute drug", But you are right - we are coming across this a great deal on the PMRGCAuk forum.

It really is concerning.

[Cathyan in reply to PMRpro]

Worrying - thanks for letting me know I’m not alone, PMRpro. Has anyone tackled the issue in a particularly effective way?

[PMRpro in reply to Cathyan]

We tell people to demand an audience with the practice manager and make a complaint. Though when they have spoken to the DOCTOR, the silliness has been overruled so far. Many practices are undergoing reviews by a pharmacist - who you would think was aware of adrenal insufficiency secondary to long term steroid use. But they probably DON'T study the back notes for all patients and possibly aren't aware that we aren't tapering relentlessly to zero but titrating the dose to find the lowest effective dose. What bothers me most is that a lot of patients are unaware of the risk of suddenly stopping steroids and may accept what they are told. Of course - a flood of adrenal crisis patients and even deaths might knock some sense into them ... As long as it isn't me or you ...

[Cathyan in reply to PMRpro]

So good of you to tell me all this. I had a feeling the situation was like this. I might try going straight to the GP. Thank you!

[PMRpro in reply to Cathyan]

Let us know how you get on - this could turn into a campaign!!!!

[Cathyan in reply to PMRpro]

Will do, thank you.

[Sherryb28]

Same happened to me only last week. I just noticed by chance that it had been removed from my repeats. I’ve been on prednisone for 42 years. Unfortunately them days once you were put on them that was it. Now days I have to increase mine when I am having a flare then go back down to my base. I’m also on azathioprine to try and keep the preds low.

I was assured it wasn’t cut backs but feel it was. Fortunately it was reinstated shortly after without a reason as to why it was taken off in first place. If they’d only realised we don’t want to be on them but don’t have a choice 😟

[Cathyan in reply to Sherryb28]

Sounds exactly like my situation. Sooo frustrating. Thanks for letting me know, Sherry b28.

[MADDIE73]

HI have you spoke to your GP about your concerns and what the plan is going to be going forward?

[Cathyan in reply to MADDIE73]

I’m away for a week but planning to do so. Ironically, I’m battling a flare and scared to increase the Prednisolone in the light of all this.

[Mimi1900]

EULAR recommendations are to eliminate it as a daily drug. Obviously the 7.5 mg needs to be tapered. You can get it in 1 mg tablets and taper i. Talk with your doctor about that.

If you are only taking hydroxychloroquine and you need the prednisone (for arthritis?) than you need to add a DMARD (methotrexate is one) as well as folic acid if it’s methotrexate that is added.

[Cathyan in reply to Mimi1900]

Thanks Mimi but I’ve been on methotrexate sc for years and 7.5mg is the lowest I’ve been on in all that time, with a covid infection sending it back higher despite Rx.

[Mimi1900 in reply to Cathyan]

Sorry to hear that, what dose methotrexate? I started at 7.5 and escalated over a year to 25mg . I was able to stop the prednisone I was taking (5mg). I did eventually add Benlysta which is helping a lot too.

WISHING YOU THE BEST

[Cathyan in reply to Mimi1900]

Thanks Mimi. I would love to be offered Benlysta! So far I’ve not been eligible.

[Mimi1900 in reply to Cathyan]

What are the eligibility requirements. I think you should try to push. Increase to max dose of methotrexate and they tell rheum you still have symptoms (if gout do). That how I finally got offered Benlysta. I still have pretty bad arthritis (it almost went away and my DsDNA normalized for one month and then shot straight up) and arthritis in my feet got bad again so I went in and asked for prednisone in addition to the 25 mg meth. Then rheum offered Benlysta.

[Cathyan in reply to Mimi1900]

Thanks for that suggestion, Mimi. Will try it. I’ve persuaded a GP to put them back on repeat and in the meantime my borderline hypercalcaemia has finally been followed up to reveal hyperparathyroidism so I’ll probably have to get that sorted first to determine what symptoms actually are due to which condition!