Dosages

[remission]

What do you set your dosage at? I recently had a flare up and went back to 5 mg and first day so I'm pretty sore & stiff. Do we look to have no pain at all or do we look for the lowest dose that keeps of mobile and makes the pain manageable? At 5 mg I am still sore and stiff in the morning, but as the day goes on I manage better with stairs etc.

[SheffieldJane]

I am on 4 mgs - doctors orders- to facilitate the accuracy of tests. I do have some pain and severe fatigue at present. It is liveable with though. My fear is that the pain will worsen. My Rheumatologist suspects a flare already. It’s kind of wait and see. I have steroid induced hypertension and a potential Adrenal issue, so I am dying to get off after almost 4 years. I might have been tempted to increase though. Getting out of the car has become an embarrassment. I saw my neighbour studiously not looking at the performance the other day.

[remission in reply to SheffieldJane]

thanks for your reply, I'm on 5mg and like you getting in and out of a vehicle can be painful and I'm willing to live with that rather than increase the dosage, as eventually I would love to be off of the pred.

[powerwalk in reply to SheffieldJane]

Jane Are your adrenals back in the picture? Did they not think they were ok now?

[SheffieldJane in reply to powerwalk]

My last test was completely normal however the Endocrinologist thinks that I should have one more Synacthen Test when I get to 3 mgs. I guess then I will be riding my bike without stabilisers.

[powerwalk in reply to SheffieldJane]

Oh hopefully you will stay upright!!! X

[SheffieldJane in reply to powerwalk]

😁

[scats]

You have asked several questions over the last month and had numerous detailed answers. However you do not appear to be taking in what people are trying to tell you.

Someone diagnosed in August is only in the early stages of the disease and can not be expected to cope on 5mg. Your dr should have told you that PMR is an autoimmune disease and lasts years not weeks or months. We all struggle to face the truth at first nobody wants to be here with this problem, but we have faced up to reality and are dealing with it.

I suggest you reread the answers to your earlier posts and the pinned posts at the side of the page.

[remission in reply to scats]

that's exactly what I have been doing this morning, thankyou for your frankness, I needed this

[scats in reply to remission]

I'm glad you feel that way, it does take time to accept illness and how it will change your life.

Several people on here put a lot of effort into sharing their knowledge and experience for no personal gain, and I hate to see their efforts wasted. We would all be the poorer without them, they have helped us all over the years. Hope all goes well for you.

[PMRpro Ambassador]

The dose that allows you to function and feel as well as the starting dose did. That is your guideline: at each reduction step you should not feel worse than you did at the previous dose. The only exception would be the fatigue many experience at lower doses as adrenal function lags behind.

EVERYONE wants to be off the pred - you don't achieve that by refusing to acknowledge that the inflammation is increasing but accepting pain as a quid pro quo. The pred has cured nothing. All it does is manage each day's new batch of inflammation, created by the release of inflammatory substances in the early morning every day. That's why symptoms tend to be worse in the mornings. As long as you are on enough pred that inflammation is removed completely so it can't cause symptoms. If you are not on enough pred there will be some inflammation left over and over time it builds up - like a dripping tap will eventuality fill a bucket however slowly it drips, dripping fast just fills it faster. When it reaches a certain level it overflows - and you have a flare.

Even on no pred I was sore and stiff in the mornings and improved during the day - after falling out of bed and getting straight into a swimsuit and getting to the gym where I did an aquafit class and then toasted/simmered in the sauna/steam room. By then I could move more easily. Once you can move a bit you can work on it and reduce the stiffness a bit. But I was never free from pain - 24 hours a day. There were a lot of things I couldn't do and was permanently exhausted purely because of the pain. It does that to you. My management of untreated PMR allowed me to work - translating freelance at home, I couldn't have commuted to a job, I couldn't have done anything in the medical field which was my real background and I could only manage it as I did because I could afford the gym membership and run the car that was essential to get there - when I couldn't drive, I had to stay at home.

You start at a dose that is more than enough to clear up the mess of inflammation and then you reduce/taper (not the same thing) to find the lowest dose that works. It is a simple and widely used concept: adjust the dose to what THIS patient needs, it is used for many drugs although usually you start low and go up. That doesn't work with pred, you need a clear run to find that dose so you start high and go down.

There is no virtue in using too low a dose - you have any downsides of pred for you with no benetits to balance them out. You can ask the same question any way you want - this is the answer you will get from the majority of the members: you need what you need and for the majority it will take anything from a couple of years up to get off pred. Nothing will change that, forcing to a lower dose won't change the activity of the underlying autoimmune illness which will burn out and go away when it is ready. Not before.

[remission in reply to PMRpro]

Thankyoufor the time you took to answer, your up front honesty was needed...trust me I do get it now, not easy to accept, but I do get it

[PMRpro Ambassador in reply to remission]

I think up-front honesty is my style. If you ask me a question - that is what you will get, warts and all. Thank you for accepting that

[SheffieldJane in reply to PMRpro]

I love it - stern goldust. 😄

[ignatz in reply to PMRpro]

A brilliant description. I recommend that you pin this one. Many thanks, PMRpro.

[DorsetLady PMRGCAuk volunteer]

Hi,

To be on 5mg after only 4 months is not the way to go...much too fast a reduction. You haven’t given the Pred chance to get a grip of the original inflammation - or the subsequent daily additional production.

I gave you this link before, but I’ll send it again. Please read it again, and now you are a bit further into your journey it might make a bit more sense.

healthunlocked.com/pmrgcauk...

I know it’s difficult at the beginning to get your head around these illnesses, they and their treatment is very different to many others, but I have to agree with scats you don’t seem to be absorbing the information you have been given.

Please read through your posts and the answers again, and if you don’t understand the replies then ask.

[remission in reply to DorsetLady]

Okay, I think this morning after a rough night I finally get it and have to accept the time lines, not easy when you're a person that believes you just have to work harder to resolve issues....I do appreciate your help

[DorsetLady PMRGCAuk volunteer in reply to remission]

We’ve all been there believe me! And it does take time - your life, and how you live it has been turned on it’s head - but it does get better.

You have to accept the new me - not always easy- but the sooner you do the better you will cope.

[SheffieldJane in reply to remission]

There have been a significant number of contributors over the years that have really wrestled with the limitations this disease brings. Like you, they have been hard working and driven. I think it may be a factor in ending up with an autoimmune disease in the first place. Perhaps use this as an opportunity to examine your lifestyle and priorities. Something was out of kilter remission. This is meant to be kind and being kind to yourself is what you need right now,

[Yellowbluebell]

Pred gives us back our lives albeit a slightly different one. Not what we wanted or expected but a life with pred is.preferable to one without for a lot of people on the forum. Especially for those of us whose gps took years to diagnose. You will get there it just takes time. YBB

[remission in reply to Yellowbluebell]

thanks, today is just a rough day, I've decided to look at it as not a set back,

but rather a reality check, I know I will make it, it's patience I have a short supply of...but thanks again

[PMRCanada]

I’m not sure which is more difficult....accepting that you have a chronic illness that will last years, or trying to taper your daily pred dose down without flaring.

Now that I have 1.5 years with PMR under my belt, including a few flares, I’ve learned that important lesson “you need what you need”.

Listen to your body...it’s telling you something. Also consider accessing supports to help you with accepting and adjusting to your diagnosis. PMR/GCA impacts our physical and emotional well being.

For me, things got better with time. Hope that you are able to come to terms with things and that you have improvement with your pain levels.