Wanting to get off pred asap

[Gellybabie]

Been on Pred since beginning March 15ml gradually reduced 12.5, 10, to now 9mm , my aches and pains kicked in 2nd week of 10ml stayed on further 2 weeks im in first week 9ml. I am impatient to get off steroids with all the problems they can bring, i just want to get back to my old self Before this came from nowhere !!!

[PMRpro Ambassador]

I've just written this on your other reply:

"No - try to fight through this and you are likely to end back where you started.

You don't take a course of pred and taper off. You start at a dose that is more than you will need and then taper, slowly, to find the lowest dose that gives the same result. It will be higher at the start, it will go down over time, but it doesn't come with a guidebook and you have to feel your way. You will find that slightly lower dose that is enough, the next down will not be enough. You will need more now than you will in 3 or 4 months time.

That is where you are just now: 12.5mg was maybe enough, 10mg is definitely not. It may be 12mg you need, it may be 10.5mg. But you need 4 weeks at each new dose to be sure it is enough, especially when you reduce that fast. NO guidelines tell you to reduce at that rate, and it does say in the medical literature that reducing at a rate of more than 1mg per month is predictive of relapse - what they call flares.

You should go back to 12.5mg and then reduce more slowly: either using this sort of approach

healthunlocked.com/pmrgcauk...

with 2.5mg at a time or just do 1mg at a time. Then you may get to 10mg, even lower. But rushing at it doesn't work It takes time.."

I know you want off pred immediately. Everyone does. You can do that - but you will be back in the state you were before and at risk of it progressing to GCA because that is what can happen with unmanaged PMR. And then the choice is either risk losing your sight or take very high doses of pred, 60mg or even more.

I'm not being dramatic - it is the reality. This a journey for the long haul. Pred isn't half as bad as some doctors would have you believe. If you are worried about the side effects - most can be managed or avoided altogether when you know how. And the place to start is by cutting carbs drastically, especially processed carbs and added sugar, which will help avoid weight gain and also help to reduce the risk of diabetes over time. It also helps reduce the inflammation to some extent.

We have all been there. We have all survived it.

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

“It came from nowhere” - yes it very often does - although stress is very often the culprit.

You may want to be off Pred ASAP, but to be honest it’s the only thing that is keeping the inflammation caused by your illness at bay. And if you don’t take the medication you are likely to give yourself more problems with untreated inflammation. Untreated PMR can progress into GCA which is a much more serious illness - which can lead to partial or total blindness.

If the pains returned at 10mg then there is no point reducing any further - they will just increase. In fact you need to do the opposite- increase to get the inflammation back under control.

There is no point taking too small a dose - that’s just a waste of time.

In order to get back to your old self - your best bet is to take the medication, accommodate your illness and get on with your new life.

At the level of medication you are on, the steroids are unlikely to cause much of a problem.

You might like to read this - it might help you come to terms with your illness and the steroids-

healthunlocked.com/pmrgcauk...

[Gellybabie in reply to DorsetLady]

Hi , Yes what you say makes sense ! My inflammation levels when i was put on pred, were only slightly elevated, so little that my Gp dismissed them. I ended up going to A&E out if desperation and the Gp there said i have all the symptoms of PMR , and was given the meds the next day and after nearly a week i was pain free . I’m feeling sorry for myself 😜 as my wedding was cancelled the end of this month due to corona, and is rescheduled end July 🤞 crossed and I don't want to be on steroids ☹️ I want to go back to December when i was well 🥴 x

[DorsetLady PMRGCAuk volunteer in reply to Gellybabie]

Hi again

I’m sorry about your wedding - it must be very distressing .

Yes I’m sure you want to go back to before all this happened - but you can’t. So you have to find a way to get through as best you can... and one way is to control your symptoms.

Some people never have any raised markers - so always take note of symptoms - or preferably lack of them before you reduce.

Your initial dose gave you freedom from pain - you aim is to reduce slowly until you find the LOWEST dose than continues to do that.

I think you need to go back up to 12mg and then reduce slowly - 1mg every month provided no return of symptoms... maybe 0.5mg a month.

[Fredddie in reply to Gellybabie]

Hi,

I was diagnosed last July and like you initially wanted to be off Pred asap. Then thanks to this forum I realised my approach needed to be very different.

Started on 40mg and apart from illness in March when my Pred was increased back to 10mg from 5mg I was doing very well. Now down to 4mg and started experiencing pains in wrists, back, neck and hips and have gone back to 5mg this morning as this is different from the withdrawal symptoms I get when reducing Pred.

I understand how you feel re your Wedding as my son was due to get married on 29th of this month and now rescheduled for early August. My initial aim was to be off Pred by then as it was a year down the line but I would rather be on it and enjoy my sons Wedding than suffer a relapse with the chance of it spoiling the day for me.

Hope this helps and wishing you all the best.

[GOOD_GRIEF]

Don't we all wish we could go back to before some set of issues settled on us.

Well, that's not going to happen.

What we need to do without delay is to wrap our heads around the new reality and learn how to deal with it.

Most of us are going to have to pick up a new skill - that of wanting what we can have rather than wasting time and energy on things that no longer exist, and aren't likely to again for the foreseeable future.

So buckle up, kids.

It promises to be quite a ride.

[Yellowbluebell]

Like good grief has said dont we all wish we were back before diagnosis. I and others like pmrpro went years without diagnosis and personally wouldnt give up pred for anyone or any symptom because its given me back my life although admittedly a slightly different one. The pred means I have quality time with my grandson and can still do a job I love although on my terms. You need to accept the new life and enjoy the fact pred will allow you to live it in less pain. YBB

[Hidden]

I can only agree with others comments. Too fast a taper/reduction is one of the 2 indicators of relapse. If you go down too quickly you will end up up yo-yoing for months, ending up with a higher cumalative dose in the end.

It is really tough that the current situation has postponed your wedding but if you manage the taper well and slowly you will be in a position to enjoy your wedding and marriage by keeping your pain down and not feeling miserable. I had 12 to 18months at least before diagnosis so pred is a friend not an enemy. My weight has gone down by low carb, high fat eating. My bone density is fine. I can think of worse conditions and worse medications to be taking. You can manage the side effects if you accept where you are now and what you have to do to stay well. Pace yourself and enjoy every little thing that is good and accept there will be bad days too. The same can be said if life generally?!

Pred isn't a monster and low dose pred like we take has less impact in terms of side effects than previously thought. I am entering year 5 since diagnosis next month. I am at 7mg having flared by reducing too fast in the first year it could be that it has made my conditions harder to manage. In my case after 8months my markers were higher than at the start and my symptoms were probably worse. Simply because I reduced pred too quickly on drs orders. So 2 things to look at...pred not the risks it's seen as..

medpagetoday.org/rheumatolo...

And a low carb diet will help with several potential side effects.

dietdoctor.com/low-carb

Welcome and ask questions if you want to know anything. Getting information from here made my life much easier regarding PMR and pred. 🌻

[Yellowbluebell in reply to Hidden]

It's the diet that I found hard and I didn't want to give up my old ways of eating where I could have what I wanted and never put weight on. Now I know I have to behave and cant eat everything in the fridge. I recently discovered after eating less carbs for a few months that toast with butter on didnt hit the spot any more and I would have been happier with a handful of nuts!!YBB

[Constance13 in reply to Yellowbluebell]

It's strange how PMR changes one's eating habit. First the metal taste, then the sweet or salty taste, etc.

The things that bothered me most were - tea without sugar or milk and the sudden and lasting dislike of meat. I never thought I would turn out to be a vegetarian.

[Yellowbluebell in reply to Constance13]

I havent been able to give up sugar in my tea unfortunately. I always loved toast as a sort of comfort food but was shocked when it really didnt satisfy me at all. It's when I realised I still loved chocolate but it wasnt the first thing I wanted when the munchies struck that I was really surprised. Oh well hopefully I will have a healthy diet when pmr decides to finally leave!! YBB

[SnazzyD]

Oh for a rewind button. Since that doesn’t exist it’s time to have a cry and a rant then be relieved; it could have been something worse. Dust yourself down, start a very low carb and salt diet right now and do a slow slow reduction of Pred. You’ll find it isn’t half bad.

[Lanakay]

When I was diagnosed I thought ok I can do this and then if I do as I’m told it would be gone. Slowly reality set in. Now it’s 2 1/2 years later and I am still at 6mg and not exactly painfree. I too would love the old fun loving, carefree, very fit and able to do anything me back again. I bought a Roomba and hired a cleaning lady to come every other week and embrace the spoon theory.

[Hidden]

Hi Gelly. I guess everyone on this forum can relate to your post. May not be what you want to hear, but reality check time. You’re at the start of a journey. You’re doing well, but PMR is more than a set of physical symptoms. It’s a complex and challenging condition and one which is likely to be life changing for some time.

There’s no magic bullet that makes it go away. It’s about controlling symptoms to an acceptable point. That will differ for everyone.

I’ve had a treat as PMR diagnosis since July 2018. First 15mg hit of pred was incredible. Free of most pain, able to move. Unbelievable. Tapered too fast and didn’t understand that it’s more about acceptance than a race to finish. There’s no clear route to the end; only a path with a light. If it’s any help, I found accepting I couldn’t control this insidious disease the most difficult aspect. I’m currently stuck at 10mg with limited symptom control. Why?

Because I wanted to get off steroids quickly. But it doesn’t work like that. You’ll end up in a yo-yo situation and others here will attest to that. It’s a horrible condition, but the psychological impact is possibly as bad as the pain. I’d suggest you slow down, now. Take time to decide the level that’s keeping symptoms under control, stick with that then...and only then...reduce very slowly. Good luck on your journey. I’ve found this forum and the expertise offered my main source of support and advice. It’s reliable and honest.

[tangocharlie]

Just want to say that the advice, and how it is written, in this thread, is absolutely superb. I wish I'd been given such advice back at the start but only found this forum 3 years in to my PMR journey. I wonder if it could be made into a pinned post, like the one for the newly diagnosed that Dorsetlady put together, as reducing steroids too quickly either from a desire to get off them urgently or from Doctors giving wrong advice, is the commonest problem that seems to crop up regularly? Thanks to everyone who makes this forum so good and for your ever-patient and wise replies.