Going from 5 to zero - wish me luck!!: So as you... - PMRGCAuk

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Going from 5 to zero - wish me luck!!

Pristina profile image

So as you know, Rheumy wants me off pred by my appt on 6th June to determine if it is PMR or something else. I went down from 10 to 5 about 5 days ago and gradually each night arms have got stiffer, waking me up when turning over, cant pull bedsheets over, sound familiar? Even during day its not easing up, feels like frozen shoulders coming back (everything disappeared when i was on 20/15mg, and even very old lower back pain from bulging discs which disappeared is now back)., So, from tomorrow i am taking 0 pred. He wouldnt give me 1mg tabs.

I am sure ill be back whinging after the weekend, but it seems the advice from here is to do what rheumy wants and come off pred before appt so he can make better judgement of what is going on.

Holiday on 13th too, which i want to be pain free for. Aaargh.

21 Replies

Wow, June 6th is a week away. I remember doing this 10 years ago but I couldn't have lasted that long. It was more like 3 days being off was enough to demonstrate the symptoms.

Pristina profile image
Pristina in reply to

Yes well they are coming back but not in a massive flare lije before, i might get away with it! Who knows ..

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

It will be painful, but at least it's only a week. Hopefully once Rheumy see how much pain you're in, he'll give you a new prescription and way forward.

YuliK profile image
YuliK in reply to DorsetLady

I honestly can't understand Pristina's

Rheumatologist ...a doctor shouldn't leave a patient in so much pain to prove a point.

😡

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to YuliK

No they shouldn’t - but sometimes it’s the only way to ascertain what is what!

Been there!

in reply to DorsetLady

I thought it was a good way demonstrate PMR. I actually had a 3-day follow-up visit to demonstrate the response to prednisone. It was rather painful though!

Pristina profile image
Pristina in reply to DorsetLady

Ill put my big girl pants on ...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Pristina

Good job I didn’t do that - would have had to wear them for 18 months!! 🤦🏻‍♀️ Sorry TMI.

The lower the prednisone (5mg) then that's the time to be very cautious when reducing. 0.5mg each month is best. I am struggling to reduce from 6mg after 5-6 weeks. I'm in no hurry and you shouldn't be either.

From reading your post it seems to me you will have to most definitely increase your Prednisone.

Good luck ...don't be shy to point out to your Rheumatologist that she is wrong.

Pristina profile image
Pristina in reply to YuliK

He only gave me 5mg tabs and i did say i would like to decrease slowly but he said -5mg per week!, ill update next week, if i am able to!!

Sheilamac profile image
Sheilamac in reply to Pristina

You can cut the 5mg tablets . Good luck!

PMRpro profile image
PMRproAmbassador in reply to YuliK

She probably will need to increase the pred - but the doctor wants to see the symptoms without pred to get a clear view. It is a very different matter. Whether he is right to do so is another matter but that is what he wants.

Is you Rheumy aware of this and it is from the NHS site.

nhs.uk/medicines/prednisolone/

"Prednisolone can cause extra side effects if you stop taking it suddenly.

Do not stop taking prednisolone if you've been on it for more than 3 weeks or have taken high doses (more than 40mg) for more than 1 week".

Pristina profile image
Pristina in reply to jinasc

Ive only been on for 4/5 weeks, been alternating doses (10/5/10/5 in last coulle of weeks, Then 5mg for a week and from tomorrow 0, we will see ...) Didnt have any smaller dose tabs ...

jinasc profile image
jinasc in reply to Pristina

4/5 weeks is longer than 3 weeks...............................be aware and do not hesitate to get speedy help.

You have much more courage than I have.

PMRpro profile image
PMRproAmbassador

Hope he gets the message!! And that someone at least lets you have pred for your holiday - since you know it works.

But write a note that you have been on pred for howevermany weeks and have recently stopped and put it easily visible in your bag - just in case. And if you feel ill don't hesitate to call the medical emergency services and tell them what has been going on.

Wishing you Luck Pristina 🍀 just take it easy this week, though you probably won’t have much choice.

What an awful way to have to ‘prove’ it’s PMR 😞

MrsN

Pristina profile image
Pristina in reply to

Well today is first day of 0 pred, verystiff and sore at 4am but not had a bad day so far, been gardening. We will see what next 4am brings!

Good luck, Pristina. I'm down to 2 mg., but had to have a few injections over the last 8 months, and now it's all wearing off. I've been in the garden all day moving 2 sprinklers around every hour, as we haven't had rain in weeks. My yard is huge. The creole tomatoes are just beginning to blush. I must admit I'm sore as can be. Feeling like a flare. I just saw the rheumy a little over a week ago and he told me not to come back unless I was down to at least 1 mg. in a month or so. I'm not sure I can handle it and am seeking out other doctors. I feel like I need an increase, even though I've just met my 2 year minimum PMR time. Don't let yourself suffer. You must be firm with your doc, but if s/he won't listen to you with compassion and understanding, it will soon be time to find a new one.

I came off after three weeks. Not plain sailing but worth a shot to see if you can stay off. It’s not clear to me that your rheumy wants to ‘see’ symptoms as these can be taken on report. Maybe when you see him ask what his reasoning is.

PMRpro profile image
PMRproAmbassador in reply to Devedaaee

He may not wish to "see" but may wish to do other investigations that pred interferes with. The reports are usually from GPs and self-reports from patient. Not at all the same thing as the specialist "seeing" for themselves. Whilst I would never say that all specialists are better than GPs, they do have a wider background of specialist knowledge that will pick up signs that non-specialists may not be aware of.

As we say repeatedly, PMR is NOT the disease, it is the outward expression of an underlying condition and there are several, some of which make PMR look like a walk in the park and some of which the average GP may barely have heard of. And be unable to order the appropriate tests. So unfortunately the patient has to suffer the process of a speedy withdrawal and return of symptoms. Stopping pred after 3 weeks is a normal process in medical practice - most use of pred is in that way, a short sharp taper to reduce symptoms of an acute illness.

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