Taper Discomfort

[Southmead]

Hello,

Just need a little advice on current taper. I have been on the slow taper plan from this site. Basically for around 6 months now I have been tapering from 5mm Pred to my current One day 4mm and onto Days 4.5mm. Next taper will be 1 day new dose (4mm) 2 days old dose (4.5mm and so on.

As always getting below 4mm seems to be when the discomfort rears it's ugly head. As I'm going down to 4mm I'm experiencing the stiffness of the shoulders, a bit more tiredness creeping it. From what I have learned from this wonderful source of knowledge is that for the Adrenal glands to start working again you have to expect the discomfort that it brings.

Sorry for long winded descriptioin, my question is, how long should I expect the stiffness, etc to continue? Should I ignore the symtoms and carry on with the tape plan?

Thank you

Peter D

[PMRpro Ambassador]

"As always getting below 4mm seems to be when the discomfort rears it's ugly head"

When you repeatedly have problems at about the same dose it is very often your body telling you you have arrived at your destination - for now at least. You are not tapering relentlessly to zero, you are titrating the dose to find the lowest effective dose, the lowest dose that gives the same result as the starting dose did. This varies over time, is higher earlier in the disease and usually falls over the course of the illness and you are able to get to slightly lower doses at intervals until eventually you are able to get off pred altogether.

PMR is not an inflammatory disorder where you take a dose of pred to eliminate the inflammation and then get off pred. It is a chronic illness where an underlying autoimmune/autoinflammatory process creates a new batch of inflammation each morning which needs to be mopped up by pred otherwise it builds up until there is enough to cause symptoms again.

Is this stiffness like the PMR was originally? Does it increase if you try to get to a lower dose? It may be PMR - not adrenals.

[Southmead in reply to PMRpro]

The stiffness is nowhere near as bad it was when I first discovered I had PMR. It seems quite steady at 4.5mm, Its now I'm hitting the 4mm the stiffness in the shoulders, etc has crept in. But compared to my diagnose in 2014, it's night and day.

[PMRpro Ambassador in reply to Southmead]

You are only just starting - continue tapering and the dripping tap of inflammation will eventually fill the bucket and overflow ...

[Southmead in reply to PMRpro]

As always, Thank you very much!!

[Munny22 in reply to PMRpro]

Hi PMRpro, Southmead sounds a little like what I’m experiencing at the moment. I’ve been having some pain in my shoulders and mid back since lowering my Prednisolone dose to 5mg, and it feels like PMR symptoms as opposed to side effects I usually get a couple weeks into dropping down.

Would you advise increasing slightly for a day and then going straight back down to my 5mg dose? My rheumatologist advised just keeping on 5mg, but I really would like to continue to titrate down because of the side effects of the steroids.

[DorsetLady PMRGCAuk volunteer in reply to Munny22]

This link contains advice in dealing with a flare- if that’s what you think it is - and also explains the difference between that and steroid withdrawal - and honestly increasing for one day is unlikely to have much affect -

healthunlocked.com/pmrgcauk...

[Munny22 in reply to DorsetLady]

Thank you for that, I will take a look

[PMRpro Ambassador in reply to Munny22]

Still applies - if you are at the borderline of the dose you are seeking, the lowest effective dose, then if you continue to taper simply because of the adverse effects of pred then you will end up back where you started with PMR and needing a higher dose to iron it out. If the dose is too low at 5mg then one day at more and back to 5mg is only postponing the inevitable and not for long, If the dose is too low at 5mg, staying there will just allow the dripping tap of inflammation to fill up.

What ARE the side effects you are struggling with?

[Munny22 in reply to PMRpro]

I have mild pain down my sternum and collarbone to shoulders and pain on the left side mid back. It’s where the original pain started, but nowhere near as bad.

[PMRpro Ambassador in reply to Munny22]

Not at the moment maybe - but if you let the inflammation increase it will eventually build up to what it was before pred. Pred cures nothing, it is a management strategy and like any management strategy it must be implemented to have a chance to work.

[Munny22 in reply to PMRpro]

Thank you, I understand that it’s a slow process and the steroids do well to manage my symptoms, but it’s very frustrating and I’m not the most patient patient.🙃

I don’t feel as though I wasn’t given much advice or guidance at my last consultation with the rheumatologist, about reducing, which was disappointing.

[DorsetLady PMRGCAuk volunteer in reply to Munny22]

I don’t feel as though I wasn’t given much advice or guidance at my last consultation with the rheumatologist, about reducing, which was disappointing.

Join the clan... 🙄

[Munny22 in reply to DorsetLady]

that was meant to say I don’t think I was given much advice.. but you understood what I meant 😊

[DorsetLady PMRGCAuk volunteer in reply to Munny22]

I did - all too common - mine was like that 11 years ago, and doesn’t seem to have improved in many places over the years….😳

[PMRpro Ambassador in reply to Munny22]

Who was/is? My superb guy just says try to get lower - but then, he knows me and my problems well. Most of them haven't a clue - they haven't done it themselves so how can they know the difficulties? The ones who HAVE been on pred are very different. And of course some doctors listen to their patients and don't dismiss them

[Munny22 in reply to PMRpro]

Yes, I felt dismissed to the point I’ve wanted to write to her and let her know.

[PMRpro Ambassador in reply to Munny22]

I might well have told her before I left! But I am good at getting into hot water ...

[Munny22 in reply to PMRpro]

😁 I think she sensed it from my questions, but it mad no difference unfortunately.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

On repeat- join the clan 😂🤣

[PMRpro Ambassador in reply to DorsetLady]

Suppose she has - found us! More practical experience here in one day than the average doctor finds in a lifetime ...

[Frigidair]

My primary care doctor first diagnosed PMR (9/22) and prescribed a 7.5MG dosage saying “I want to see how you respond.” Fortunately relief was almost immediate. She then referred me to the rheumatologist who after 3 months recommended I begin tapering at a rate of 0.5MG every four weeks. Initially I thought this was rather slow until reading posts here and at the Mayo Clinic website. He advised that if I begin developing symptoms to immediately return to the last dosage where I was comfortable. “Everyone is unique” he added. “We will listen to your body and respond accordingly. “ Very understanding. So far so good. Fingers crossed.

[PMRpro Ambassador in reply to Frigidair]

You were incredibly lucky though - 7.5mg is a very low dose to start with. Would they have tried a higher dose if it hadn't worked?

[Frigidair in reply to PMRpro]

I’m sure there would have been absolutely no reservations in increasing the dosage. Initially I got the sense the 7.5 was a hopeful long shot and she was delighted with the positive response. Evidently atypical but still worth a try. Ultimately, hopefully, making the taper a slow but less time consuming process.

[PMRpro Ambassador in reply to Frigidair]

One hopes but in some people starting on a higher dose seems to make subsequent tapering smoother, One friend has had PMR twice, the first time she started at 30mg and had a smooth journey. The second time they had started to panic about pred and 15mg was the approved dose. And she struggled.

[Frigidair in reply to PMRpro]

It seems a characteristic of PMR that there is a wide variety of patient responses to both the condition and its treatment. This makes it difficult for both patient and doctor. To “panic” over higher dosages on the surface seems extreme. Patients listening to their bodies, with doctors listening to their patients, seems the best formula for success.

[PMRpro Ambassador in reply to Frigidair]

I see the initial use of a high dose in PMR - and by high I mean 25mg and down - as like using it in asthma and chest infections. Get the patient comfortable and functioning better and then concentrate on finding the right dose. A bit like a good springclean and then adjusting the level of cleaning to match the daily creation of disorder and dirt. If the accumulated detritis is gone, the surface tidying is a lot easier.