I realise that you cannot give medical advice and I wouldn't ask for it (I intend to contact my GP tomorrow) but I would welcome any input. I was advised to reduce my dose of Prednisolone from 13.5mg to 12.5mg. since doing so my heavy aching muscle pains have returned and my arms feel like they have weights attached to them. I am also more fatigued, I was feeling quite good on the 13.5mg. I presume the drop of just 1mg could have caused this. Will it level out do you think, do I persevere with the 12.5mg. I think my GP is keen to get the dose down as quickly as possible.
Help please: I realise that you cannot give medical... - PMRGCAuk
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39 Replies
•
A lot of people have a reaction when they first reduce for a couple of days or so. However, if you start getting the pain a week or two after the reduction it is probably a flair and you should increase again.
PMRproAmbassador
How long has it been going on? Some people react quite strongly to the change in dose and suffer steroid withdrawal which starts immediately you change the dose and then improves over following days though for some it can last up to a couple of weeks. If, on the other hand, the pains and symptoms worsen that is a clear sign you are now on too little pred to manage the inflammation and it is building up again.
I appreciate he wants to reduce the dose quickly - but you can only reduce the dose if the underlying cause of the PMR symptoms will let you.
If it doesn't improve, the usual advice is to go back, get the symptoms under control and then taper in 1/2mg steps. Sometimes you need a higher dose first of all to really clear out the accumulated inflammation - then you have more wiggle room for reducing the dose. And if he says it is too slow - it isn't slow when it works!
• in reply toPMRpro
I was started on 15mg six weeks ago. After three weeks I was dropped to 12.5 and symptoms came back. I was increased to 13.5 which was ok. Since going to 12.5 again yesterday the symptoms are coming back again. I have a review due in three weeks time.
It is possible if you go back to 13,5mg and then try a half mg reduction it would work. But if not - you need 13.5mg for now - you will get lower, just not yet. You are adjusting your daily activities too aren't you? Pred isn't a free pass to go back to normal daily life - not yet at least.
• in reply toPMRpro
🫣 I love the way you put things. I did adopt a 'swallow the pills and carry on' approach at first but I am learning the hard way
Orange_2022• in reply to
Yes...you're not the only one! It's very hard to remember not to overdo things when you're feeling OK - until you're not! Look after yourself and trust your own judgment when reducing.
• in reply toOrange_2022
Thank you 🙂
Potemkin• in reply to
I started on 15mg and was asked to drop quite quickly to 12.5 and really panicked and said I wasn't ready. My GP agreed to keep me at the dose for longer as he said I knew how I felt. I did get passed to another GP once but had to explain so much that I've now insisted on talking to the same one.
Resting is super important to - I dropped all exercise for nearly 2 months and then gradually picked it back up. I also made sure I had an easier day in between days where I did quite a lot.
It's been really hard to adjust my life but I realised I needed to in order to get better in the quickest time. Frustration has been difficult to manage so I'm trying some meditation which is helping.
Good luck
• in reply toPotemkin
Thank you for sharing this
Wizards• in reply to
Can I ask what method are you using to reduce your prednisone? Have you tried the Dead slow method? I swore by it throughout my journey to zero.
• in reply toWizards
Hello, I don't have a method, I'm only 6 weeks diagnosed and a newbie to it all. I have spoken to a doctor who said stay with the 13.5mg as it is a better dose for me until my review in three weeks and we will talk about it then.
Wizards• in reply to
Hi Little JaneI personally really like the dead slow method. It's the one on line here that you can find. I used it for my pmr journey and was lucky that I never flared.
I also took min 1 mos up to 3 months between drops to stabilize.
You can find this method on this site. Just dropping down will cause you problems you need a tappering schedule.
Hope this helps
• in reply toWizards
Yes it does, but what do you mean by drops? I have tablets, three different strengths 🤔For now I want to stay on my current dose of 13.5mg. it controls the symptoms. At 12.5 they come back. I think 6 weeks is too premature for the doctor to be talking about reducing/stopping.
Drops there means changes in dose, reduction steps down. They mean they can wait anything from 1 month to 3 months after dropping the dose from higher to lower before they try another tapering step down.
• in reply toPMRpro
Sorry, my brain only has one speed.
Lonsdalelass• in reply to
Hi Little Jane, if it's any consolation I thought I would add my experience of when I first started on pred.....just like you I was put on 15mg and after 3 weeks told to reduce to 12.5. Like you, this was too much of a drop as I felt rough so I increased to 13.5mg, much to my doctors dismay who gave me a talking to about how I should be reducing more. But, and this is the important thing I want to say, I took my time and stayed on 13.5 until I felt ready to take that next drop down to 12.5....if I remember I'm sure it took about 3 weeks at least. I suppose what I'm trying to say here is that you must listen to your body and just take your time in reducing......it took me 3 and a half years to finally be able to stop the pred altogether, and I was one of the lucky ones in that I didn't have many major flares nor was on pred for longer than that. We are all different. I took my last pred in May 2022, and thankfully I've been tootling along OK ever since. Good luck Little Jane with your journey....you will get there.
• in reply toLonsdalelass
This is so kind of you, thank you 🥹 I have only been diagnosed 6 weeks and I was given a reducing programme straight away 🙄
Lonsdalelass• in reply to
Yes, that's fairly typical. They put us on pred, then want us off it as soon as. But as patients we know it can't be rushed. On this forum its suggested a drop of no more than 10%, and there's a tried and tested reason for that. That's why I put myself up to 13.5 as a drop from 15 to 12.5 was too much, and I learned the hard way but was following doctors orders at the time 🙄. I soon learned to stand up for myself a bit more, which included changing my doctors surgery (amongst other things!). Be strong and have faith in listening to your body and letting the doctor know how you feel. You're the one living with PMR, not them. All the best.
• in reply toLonsdalelass
Thank you. We have been with this surgery for 44 years and would not want to go anywhere else. I just need to be a little more assertive, not something I find easy. Thank you for your kindness.
Lonsdalelass• in reply to
You are welcome. It is difficult, I know. Sending you virtual hugs 🤗 .
But to be fair - is it still the same surgery you joined way back then? Many have been taken over by corporations and even a change of senior partner can completely change the ethos of how it was set up and run originally. Occasionally that is a good thing - but more often it isn't.
• in reply toPMRpro
No, it can't be. Doctors did house calls back then. One partner came out to our asthmatic son with a nebuliser at three in the morning. You could get an appointment with the Dr of your choice at a time if your choosing. But it is nice to have familiarity and be recognised by reception staff and asked how I am. I was 23 and pregnant with our first baby when we moved here and joined the practice. Now we are pensioners.
DorsetLadyPMRGCAuk volunteer
I thought you said elsewhere that your GP had suggested you stay on 13.5mg until you see her at next appointment after your holiday.
If so, then do that… but carry extra with you whilst you are away in case you need them.
• in reply toDorsetLady
Yes she did, but then another GP said he wanted me off them in a few months so I thought I'd try. I get so confused I don't know which way is up and I have a phobia of being told off by authority figures. The abused child in me still just wants to please everyone 😥You are correct DL, thank you for reminding me. 13.5 it is.
Well the GP who wants you off Pred in months is unrealistic, and obviously knows nothing about PMR.. which I realise doesn’t help you.
So if you can, I’d avoid them, and stick to the one that has more idea… and again that’s not easy, I know.
If you can, try and stick to the one that has a far more realistic worldview! The GP who is talking about a few months really doesn't understand PMR - it lasts years and as long as it is alive and kicking, either you take pred or you will be back where you started. I do realise it is difficult - I went to uni with medical students, they aren't an authority in the same way for me, I saw them drunk out of their minds like everyone else! But for most people it is a difficult thing and especially for you.
Lonsdalelass• in reply to
You will find strength and confidence here on this forum to be able to stand up to any 'bully' tactics from the authority figures you may encounter. Our experienced members are full of wisdom and knowledge, and knowledge is power, so you're in the right place LJ.
• in reply toLonsdalelass
Thank you, I am starting to see that. Our GPs are good on the whole, but some can be a bit impatient with the older people. One made my son in law's Granny cry 😠
cranberryt• in reply to
I will also add that long term… moving too fast means you will likely start yo-yoing which actually results in needing more prednisone and dealing with more pain in the process. When you go slow… and never continue to decrease when the pain returns (aside from adjusting to the drop for a few days) … you will end up on less prednisone over the course of the disease. Those who yo-yo often find their symptoms get worse over time and eventually seem to struggle with needing higher and higher doses. We are not rushing to get off prednisone… we are slowly reducing to find the lowest dose that manages our symtpoms. Often that number is more than doctors want it to be and we have to go slower then they want because they don’t truly understand PMR.
• in reply tocranberryt
Thanks for sharing that cranberryt. Some of our doctors are understanding and actually listen, but some expect you to DO WHAT THEY SAY 😠 Me doctor, you patient 🙄
I have just spent nearly an hour sorting and checking three different dosages of Prednisolone (10mg, 2.5mg and 1mg = 13.5mg) in a pill dispenser for a two week holiday. That's me sorted for now. Good night all 🙂
Rugger• in reply to
Have a wonderful, pain-free holiday!
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