Is it OK to regulate yourself on Prednisilone?

[Morant]

I was diagnosed with PMR in 2018 and then my GP said I had temporal arteritis this year. I have other medical issues. In 2018 I was put on a reducing dose of Pred which finished in 2019. In 2020 my inflammatory markers were high and once again I was put on Prednisilone, reducing dose over the year, finishing at the end of the year. I was checked for GCA each time but did not have it. In Jan 2021 my inflammatory markers became even higher and I was put on a 45mg dose of Prednisilone also reducing. I have not had a biopsy but I have had an ultra scan which showed nothing significant . My GP has been great throughout and has arranged for me to see a neurologist and have an MRI scan. After the scan the rheumatologist said I did not have to see him. My inflammatory markers are still rising. However my GP has not arranged for me to have any follow up appointments with him and I presume it is because I am waiting for neurologist. I am now back up to 9mg after trying 7.5mg. My question is , should I stay on 9mg until I hear from the neurologist which can take months or could I start reducing without bothering my GP? I must admit I am not in the best of health and daily life is a struggle.

[jinasc]

Personally I would stick with the dose you are currently on and just forget about reducing at present.

Yo-yoing can and does cause problems, so sit still you get the appointments or alternatively sit were you are for at least a month, then try a 1mg drop using either DSNS or DL's tapering plan. This is not a race to get off pred PMR and GCA have minds of their own.

We are trying to live with it as comfortably as possible, till both decide to go into remission.

Slow but steady as you go.

[Morant in reply to jinasc]

Thank you.

[DorsetLady PMRGCAuk volunteer]

If your inflammatory markers are rising, then your GP should be addressing them, irrespective of upcoming appointment with neurologist.Looking your your profile/previous post it doesn't appear that your PMR/GCA has been correctly treated in the past - too fast a reduction on initial PMR diagnosis in particular.

If it were me I’d stay at 9mg for a couple of weeks, but you do need to contact GP - by whatever means your surgery is using to advise him of your situation - and to discuss way forward. And get his approval to allow you adjust your medication as necessary.

[Morant in reply to DorsetLady]

Thank you for your reply. I will contact my GP. I am glad you suggested that because I was worried about bothering him if it was unnecessary.

[SheffieldJane]

A lot of us are given control of our Prednisalone dose and tapering regime by our Rheumatologists. Mine just said “ you seem like a sensible patient”. She also told me that she couldn’t tell me for sure if and when my GCA/LVV had gone completely. It is very dependent on symptoms. I was diagnosed by abnormal cells in my left armpit via ultrasound scan and a specially trained technician - it would have been missed with a full body MRI - mine showed nothing . I would not start reducing if I felt unwell with my symptoms at diagnosis. In your place I would taper very slowly by half mg drops, using one of the taper programmes in FAQs on here, but, I emphasise, not if I was symptomatic. It sounds like your dose may not be mopping up all of the inflammation. Your body will also protest with yo yo dosing. Your 45 mgs dose sounds like they suspected GCA and then of course Pred ruins diagnostic tests. I would proceed cautiously. Always alert for head jaw and eye symptoms of GCA.What about raising to 10 mgs and sitting there until you see the neurologist? Hopefully a new specialist will shed light on this tangle.

[Morant in reply to SheffieldJane]

Thank you for your informative reply.

[PMRpro Ambassador]

Why a neurologist? They do occasionally manage GCA but it isn't really a neurological condition.

I would venture to suggest your current/past doctors are creating a problem by persistently reducing the dose of pred so fast. Neither PMR nor GCA are acute disorders where you take a dose of pred and taper off it. You should be looking for the lowest effective dose that manages the inflammation for the longer term. Only half of PMR patients get off pred in under about 6 years. Only 1 in 5 is able to get off pred in a year and then they remain at a higher risk of relapse afterwards. Most flares and many early relapses are due to too fast reductions.

[Morant]

I would like to thank you for your rep,y. It has cleared a few things up for me which I felt hadn’t been correct. I will be getting back to my GP.