Downing fast 🥺: My doctor rang today to see how I... - PMRGCAuk

PMRGCAuk

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Downing fast 🥺

Ronzy profile image
37 Replies

My doctor rang today to see how I was doing.

After a month on 25 prednisone

Now starting on 20 😬 SHE HAS THIS PLAN.

Just have to see 🤷🏽‍♂️ If pains come back,I can see me having a battle .

She keeps saying getting me a rummy but nowt yet ,hope soon 😵‍💫

That seams to be the worst of this PMRA ,the battle with the doctors 😩

What’s happened to PATIENTS KNOWS BEST

Anyone know how the relieve tension in temples & fussy head ?

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Ronzy profile image
Ronzy
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37 Replies
piglette profile image
piglette

I did not know that the patient ever knew best!

PMRpro profile image
PMRproAmbassador

Patients don't always know best - but then, sometimes doctors don't either. It should be a partnership, listening to one another.

HeronNS profile image
HeronNS

Any chance you could come down by 2.5, two weeks at 22.5, two weeks at 20? You can split a 5 mg tablet provided it's not coated. May get you where the doctor wants you, but a bit less of a shock to your system.

Ronzy profile image
Ronzy in reply to HeronNS

Sound a good plan. But wood that need more prednisone, doc meters it out like gold dust 🤷🏽‍♂️

HeronNS profile image
HeronNS in reply to Ronzy

Math is not my strong point but I think it might take seven more 5 mg tablets (the ones you are splitting the first fortnight). Would it be worth asking her? The 5 mg reduction is 20% of your dose, whereas 2.5 is the 10% we recommend.

Ronzy profile image
Ronzy in reply to HeronNS

Mmm it is a plan but feel a little pig headed, I want to prove her wrong. that is the doctor.Thanks for your good advise we’ll see. Something like that 🥺🍀🍀🍀🍀

HeronNS profile image
HeronNS in reply to Ronzy

Well, good luck to you!

Sharitone profile image
Sharitone in reply to Ronzy

Hi Ron, I get it that you want to prove her wrong, but while you're waiting for a rheumy, which could be months,😧 I just thought I'd say that my GP and rheumy have always advised a drop of 2.5 mg from 25mg, like Heron says. Your GP probably won't care if she's wrong, but we don't want to think of you in pain and having to increase the dose again!

Ronzy profile image
Ronzy in reply to Sharitone

Your write , blow her I’ll do it our way 🧐😤 Thankyou very much for your concern ,all of you.

Onwards and downwards

It is fantastic to have an ear ,

All the very best with your battle

God bless you all .I am not religious at all

But I do believe there is a god .

Sorry getting carried away.

🍀🍀🍀🍀🍀🍀🍀

Grammy80 profile image
Grammy80 in reply to Ronzy

Truly wish you the best. Be lost without this ear and it's wisdom.💕2.5

Betty_H profile image
Betty_H

My rheumatologist had a plan to decrease my pred by 5 mg at a time, too. He was going to get me off of it pretty fast. That was in Jan 2020. I'm still on 8 mg. We had to decrease by 2.5 mg and when we got to 12.5 I had a flair. That happened twice at 12.5. So we went back up and I started MTX. We waited over 3 months. Then I was able to go down by 2.5 until I got to 10. Now I'm going down by .5 each time. It averaged .5/month. Sometimes longer, sometimes shorter, just depending on how I feel. Be patient, but let your doctor know if the decrease makes you hurt. They need to know.

Ronzy profile image
Ronzy in reply to Betty_H

Thanks v true 🍀🍀🍀🍀

Pixix profile image
Pixix

Here’s an alternative answer, which I’m sure won’t be popular, but here goes…You want to prove her wrong, you feel it’s a battle as you don’t want to do what she advises. Why don’t you just see a different doctor & get their advice? You say ‘I will do it ‘our’ way’…who is ‘our’…PMR Pro & DL & others on here? That’s not fair on them, they can only advise, Ronzy, the decision to go against your doctor is purely yours, & you need to be sure of that, please. 25 pred…wow!! That’s high because you’ve had Covid perhaps. Please be careful. This forum is wonderful & we need to preserve it & take care of our advisers!! The doctor is the only one who can prescribe pred…you need one ‘on your side’! Have you tried 20? If you try it for a few days & doesn’t work, you can ring her back & explain…& decide yourself if you wish to stay on 25. We all want to help you, & the advice & help here is always excellent…I have one doctor in our surgery I don’t wish to see again, but found another two are excellent. Food for thought!

Ronzy profile image
Ronzy in reply to Pixix

Wise words Pixix , Sorry my way , got carried away a little.l seam to. get a little bollshi on pred😱

I’m going to try as doc says,can’t pick and choose doctors at our surgery.

Changed doctors last time on pred .Think I may have jumped out of the frying Dan into fire 🤣 .This doctor is very young and assertive 😢. She also is doing me on phone.

One time I had 5 different doctors on consecutive visits 😱 it’s like musical Doctors

As you say see how it goes,not over covid effects yet .

Thanks ,and all the best to you 🍀🍀🍀🍀🍀

Pixix profile image
Pixix in reply to Ronzy

Well taken, Ronzy! Tough luck your doctors keep changing. Pred makes me bolshy, too, my husband says higher doses make me excessively bossy & tough to live with! Think that’s why I tried to write a ‘calm down a little’ message, tbh. The doctor may be doing her best & may truly be trying to help, but may not have taken the time to read your recent history. Take care of yourself, it’s a difficult balancing act, Covid & PMR, but I’m sure you will find your way through! I don’t think they will see you face to face while you have Covid…one doctor gets it, passes to staff, surgery closes, can’t help anybody, but I think most surgeries are starting face to face appointments so push for one of those once you’re better, Covid wise, I reckon it would help you as it’s easier to have a good discussion that way! All the very best to you, S x

PMRpro profile image
PMRproAmbassador in reply to Pixix

Funny - my A&E daughter doesn't have the choice! She has to see Covid +ve patients f2f. Mainly because the GPs won't ...

Pixix profile image
Pixix in reply to PMRpro

OK…just my opinion, she is in a hospital. If she gets Covid there are others to cover her job, she’s not alone in the place, although she’d be sorely missed! In our village surgery we have four doctors…if one gets it, they may all have it. I don’t want to go there in that situation! They have a small number of employees & may have to shut the place. They also have their own pharmacy. They cover about 9 villages here. There is no alternative…guess we could all go to A&E or ring 111, etc, but doesn’t seem a great idea! They haven’t stopped seeing patients since Covid started. If a F2F is necessary, they see you. But take your temperature, ask questions & it’s great if you’ve done an LFT, too! But I think that’s sensible myself, for me that’s a positive. Sorry re your daughter, but she’s in a different position for a GP in a surgery, I feel!

PMRpro profile image
PMRproAmbassador in reply to Pixix

There are only finite numbers of ED trained staff - same applies I fear.

Pixix profile image
Pixix in reply to PMRpro

I realise that, but at least there are other doctors & nurses in the hospital who could help, even if not trained in ED work…well, I’d like to hope some body would come from a different dept to help me if I was in an A&E emergency!! If Covid gets to the point where a hospital has to close we’d all be in lockdown, whereas if a gp surgery was closed there wouldn’t be a lockdown, I don’t think!

PMRpro profile image
PMRproAmbassador in reply to Pixix

Yes - but that then leaves that department/ward understaffed and they can't take patients from the ED because beds aren't covered. That results in a patient jam in the ED and ambulances sitting outside unable to offload their patients. So they can't free-up to be sent to a new 999 call and the calls mount up while seriously ill patients can't have help sent to them. It is a pretty complex knock-on effect.

Pixix profile image
Pixix in reply to PMRpro

So what’s new? My friend lay on the pavement for 3 hours waiting for an ambulance. Another spent 8 hours in an ambulance on arrival at hospital & 2 nights in a corridor, then 7 weeks in a cardiac ward waiting for an op, then caught Covid, now another 4 weeks waiting for the op. Nothing is perfect & I’m not trying to argue with you. Every member of NHS staff is open to Covid sadly, no way to protect them, & they have a life outside work where they can catch it just as easily as they can at work, even F2F with cases….end of story!

Ronzy profile image
Ronzy in reply to Pixix

Wow nearly ended up in A&E this afternoon, this terrible pane under ribs right hand side also splitting headache,I was almost sure what it was ,monitoring it For half an hour, drinking lots of water.

Then phew it subsided.

Had it several time hospitalised three times with it .

Stones had Gaul bladder removed, but not much help

I have narrowing of BILE DUCT

What a relief

Had a really bad do on a cruise ship,dare not tell them as they would have turned round,and left us in St.Petersburg 😱 so after a lot of pacing up and down the

Cab-bin for over an hour, then violently sick it subsided phew !!

Told doctor at home about it he said I had being foolish as could have resulted

In Pancreases itos 😬

Sos for the rambling 🥺 seam to have my text head on

Thanks 🍀🍀🍀🍀

Pixix profile image
Pixix in reply to Ronzy

I have a friend in hospital with pancreatitis, they can only feed her through a tube, she is sick if she eats any food whatsoever. Good idea to report todays episode to doctor, maybe, please??

Ronzy profile image
Ronzy in reply to Pixix

Mm good idea,didn’t give that a thought.tho it’s no easy at our place, for owt we have to ring for an appointment.Often think it would be useful if we could text them as they do us sometimes

Otherwise felt ok on lower dose 😊

Pixix profile image
Pixix in reply to Ronzy

Good news that you felt OK on the lower dose. Yes, we have to ring for an appointment. Our surgery is overloaded at the moment, lots of people put off going during past two years & they are overwhelmed! I phoned today, but can’t get an appointment for over 2 weeks. But our receptionist asked me what was wrong, when I explained she gave me an email address to send it my details & symptoms. Go for it, let them know how sick you were today, I reckon.

Ronzy profile image
Ronzy in reply to Pixix

Two weeks that’s terrible 😱at our it’s ring at 8 if full ring next day

Pixix profile image
Pixix in reply to Ronzy

It’s not normal at our practice right now! If it’s urgent, though, we can be seen same day, which is good.

Ronzy profile image
Ronzy in reply to Pixix

Who decides what’s urgent 😵‍💫

Ronzy profile image
Ronzy in reply to Pixix

Sounds really nasty,hope I never get it 🥲

PMRpro profile image
PMRproAmbassador in reply to Pixix

And our GPs see you f2f, absolutely normal turn up and wait surgery hours. And THEY are almost entirely single-handed practices, no receptionists, no nurses, they do the lot.

Pixix profile image
Pixix in reply to PMRpro

Good, that obviously works well in Italy! Excellent news.

Ronzy profile image
Ronzy in reply to PMRpro

Mmm good old days 🥰

borednow profile image
borednow in reply to Ronzy

Make friends with the receptionists - mine are as fed up with the GP's as I am!! Receptionists have been brilliant throughout pandemic and they do get an awful lot of aggro both from GP's and some patients which is not fair. Give it a try ........

Ronzy profile image
Ronzy in reply to borednow

A plan 👍. My favourite at our doctors is a special Nurse Liza ,Saw her with my after Covid symptoms, she actually feels for you , so down to earth, she said some people think she is taking the Mickey.prescribed amoxicillin

Hate the stuff but does the job usually.

All the very best to you 🍀🍀🍀🍀

singingloud profile image
singingloud

Do you have GCA?

Ronzy profile image
Ronzy in reply to singingloud

Not diagnosed but sometimes wonder,seams to me you have to have all the symptoms before they do

Tahiri profile image
Tahiri in reply to Ronzy

I think you’d soon know I you had it. The pain is excruciating and usually there’s a raised artery in your temple and a very tender scalp.

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