Ear we go again!!: Thought it was sorted for the... - PMRGCAuk

PMRGCAuk

20,313 members38,050 posts

Ear we go again!!

15 Replies

Thought it was sorted for the repeat prescription for pred. with GP pharmacy if I needed to higher dose. Myself, Rhumy & Doc's. seem to be hearing, writing & understanding different things. To his credit Rhumy prescribed me some spare to escape his unrealistic plan. Doc's. go by Rhumy plan & hold the line! Spares won't last long when it goes tits up as usual!! As it has at 15 & back at 20 for a week now. They have no idea of the additional stress this crap has!

15 Replies
PMRpro profile image
PMRproAmbassador

Think you need a more adventurous GP...

in reply to PMRpro

GP world! Who really controls the practice? They are a mystery! This is steroid bean counting world. Nothing new there then what I've read! Medical science & personal experience big gap sometimes.

PMRpro profile image
PMRproAmbassador in reply to

Unfortunately I can only award this a single like...

SheffieldJane profile image
SheffieldJane

It is stressful and makes you feel slightly suspect. My Rheumatology Registrar, my GP’s surgery and practice pharmacy don’t really talk to each other about dosage. I am the coordinating person and I like to ensure that I have extra in hand in case of GCA or a flare. The prescription is on repeat and reviews are perfunctory. The NHS must waste millions because doctors are too stretched to monitor, over or unnecessary prescribing. Except for you Pepperdoggie everybody is supervising you for some reason. 😉

in reply to SheffieldJane

Perhaps they really care about me Jane! I should be so honoured if they heard the patient! Only too keen to push other meds.. life saving courses, anything that puts bums on seats etc. The NHS has overall been very good in my experience but this steroid stuff seems way out of line! You seem to have negotiated a sensible position in your trio of professional helpers. Well done. Thought I had too! Must have hit the post when I thought it was going in! Celebrated too early! ( No I didn't slide on my knees to the corner flag)!!! ATB

SheffieldJane profile image
SheffieldJane

I think it is more that I barely engage or ask questions. I want to stay under the radar and manage this on my own if I can. I’ve learned enough on here to feel that I can do that unless something unusual happens. So far my experiences have been predictable and average. I’ve been lucky. I have the safety net of a great Rheumie for this field too.

in reply to SheffieldJane

Yes, I agree about managing ones own Pred. etc. I have worked with GP's pharmacist, who has given me a huge bag of drugs to take one our forthcoming 6 weeks holiday in Tenerife. (including 5 mgs and loads of 1 mg Pred) And GP is quite happy for me to try and taper down as I want. I am currently trying to get down from 14mgs but struggling.

Bridget

in reply to

Seems the ideal way forward Bridget. Have a good holiday in the sunshine.

in reply to

Thanks, cant wait. Think my husband needs it too, after all the worry about PMR, possible liver cancer etc

Sallydvs profile image
Sallydvs

Did your ear feel blocked?

in reply to Sallydvs

No Sallydvs. It was a sarky take on my prescription repeat for pred. at my GP surgery which had gone unheard! Sorry for the confusion. Ear pain is always worth a proper diagnosis though. Hope you can get it sorted.

Carrollee profile image
Carrollee

Really sorry Pepperdoggie about all this stress. 😳 I read a lot about different ones being rationed with their pred. It's beyond me. I get my repeat prescription on line now, I just tick whether i want ones or fives or both and he agrees and its sent electronically to the chemist for me to collect. I have never been questioned about what I am ordering or when and I keep plenty in stock. Although I could moan about certain aspects of my care I realise I am blessed in this department. Am rooting for you and hope you win the battle. All the best cc🤗

Hollyseden profile image
Hollyseden in reply to Carrollee

I can't get Pred on my repeat prescription but Doc always asks me what I need and gives me them in generous quantities. Last visit, she said I don't need to return monthly unless I'm unwell because blood tests results have been good. Just continue taper and return in 10 weeks after blood tests etc. When I said I might not have enough Pred for that long, she said just phone up and tell us what you need when you need it. RESULT!! Just hope don't need to see her before then.

Feel so sorry for people who have to fight for theirs.😥

in reply to Hollyseden

I can now order on repeat but they only issue what the Rhumy original plan says. It's the daftness that's so wearing!!

in reply to Carrollee

Thanks. Carrollee.

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