PMR Symptoms or Pred Withdrawal

[SpaghettiWestern99]

I’m currently tapering from 10mg to 9mg. I’m pain free, mobile and active (which I know for many isn’t the case).

My initial PMR onset and diagnosis was only a short period of time and my symptoms responded well to steroids. This means I’m aware of the severe effects of PMR. I still get tired easily and have to contend with side effects of the Pred - I haven’t dealt with being on them well.

My question is how do I know when the PMR is in remission?

PS - I know someone who was diagnosed with PMR in her 20’s.

[DorsetLady PMRGCAuk volunteer]

My question is how do I know when the PMR is in remission?

If you mean the remission that we talk about, then when you have been off the Pred for a few months and no return of symptoms....it takes anything up to 6 months for symptoms to reoccur if it isn't. Which as you have only be diagnosed a short isn't any time soon.

If you mean remission as in clinical remission - that just refers to the symptoms being controlled by the medication.. not the illness have gone ... not the same thing.

This may explain how to tell if you have steroid withdrawal or a return of symptoms [flare] -

healthunlocked.com/pmrgcauk...

[SpaghettiWestern99 in reply to DorsetLady]

Thanks DorsetLady - all helps me contextualise for the coming months

[PMRpro Ambassador]

When you get to zero pred and have been off it for 6 months and more you can say the underlying cause of the PMR symptoms has burned out and gone into remission. You can't say while you are still taking even a low dose of pred because 1mg, even 1/2mg, can be enough to keep the daily dose of new inflammation under control. If the disease activity is very low, it can take up to 6 months to build up enough to cause symptoms you can feel.

Bless her - did she succeed in finding a doctor who realised rare doesn't mean never reasonably easily? There is a report in the literature of a 24 year old athlete who developed PMR - they couldn't find anything else to account for the symptoms and he responded immediately to a moderate dose of pred.

[SpaghettiWestern99 in reply to PMRpro]

Thanks PMRpro - helps me with my planning (assuming it goes well, which I’m understanding is a relative term).

She did find one and got fixed, slowly. She’s now flying, but wary of the rationale why it started in the first place

[Gimme]

Thank you for this question. I've been wondering the same thing myself. Last time I saw my doc she casually remarked that my PMR is burning itself out and I thought to myself, what on earth gave you that idea? I have no evidence of that. It just happens to be that a relatively low dose of 6mg pred completely controls my symptoms, but I sure know about it if I accidentally forget a dose.

[SpaghettiWestern99 in reply to Gimme]

Good point, I’ll ask the doc the same thing at my next appointment.

[Gimme in reply to SpaghettiWestern99]

Well, both the doc and the rheumatologist want me off pred, but I don't want to go through all the agony of withdrawal (tapering) only to find myself back on the stuff within weeks or months. My PMR seems relatively mild compared with a lot of people in this group, but even so, it really has curtailed my quality of life over the last few years and pred enables me to look after myself. I struggle to do basics around the home without it or leave the house.

[SpaghettiWestern99 in reply to Gimme]

I understand. It’s the uncertainty of what the journey is going to be, but knowing you can’t go back to those pre-Pred days.

Like you I couldn’t function then and I’ve gone from fully fit to a pill dependant, emotionally different version of myself.

Musn’t grumble 😃

[DorsetLady PMRGCAuk volunteer in reply to SpaghettiWestern99]

We know the journey is uncertain… but you have to remember that the vast majority of people get through PMR and do return to a normal life -albeit a few years older.

Great as this forum is, it does show a skewed version of PMR- people usually only comment or ask a question when they have an issue with their illnesses- there are many that don’t need us.. . Ever.

I always think we’re like an insurance policy/company - only required when things go wrong!🤨… but easier to contact without any ‘select option 1 to make a claim’…..🤣😂

[PMRpro Ambassador in reply to SpaghettiWestern99]

"but knowing you can’t go back to those pre-Pred days."

Except that isn't true for everyone.

Read Skinny Jonny's story here

healthunlocked.com/user/Ski...

He was training for the London marathon when PMR put him in a wheelchair and had run many marathons and climbed in the Himalayas, And once PMR was out of the way - he did another climb of Annapurna IV just before Covid.

It can be done.

[SpaghettiWestern99 in reply to PMRpro]

I can feel I’m getting fitter, I’d just like to be off the Pred - it doesn’t suit me. But I guess I’m not alone in that one😜

Support from this group is appreciated

[PMRpro Ambassador in reply to SpaghettiWestern99]

We'd all like to be off pred - but when the alternative is a return to pre-pred PMR or for GCA risking your vision it puts the downsides of pred into context.

What doesn't suit you? Most downsides of pred can be mitigated or managed when you know how.

[SpaghettiWestern99 in reply to PMRpro]

Thanks PMRpro ,

I’m currently in a phase where I’m starting to manage the side effects e.g nausea, dizziness, head fog & anxiety. To do so I’ve needed to reduce the Pred, and start taking antidepressants, vertigo meds and Lansoprazole. This has literally only been in the last two weeks.

Along with the supplements I’m like a pill bottle every morning.

[PMRpro Ambassador in reply to SpaghettiWestern99]

The question of course is whether the supplements are required. Did you try splitting the dose or taking it before bed so you sleep through the rest of the problems? Just a thought - it has worked for several.

[SpaghettiWestern99]

I didn’t try splitting the dose, but I do think the Pred reduction has had an impact. The vertigo tables have made a huge difference, as has the anti-depressants. Strangely I’m not depressed, but they have provide me more energy.

I guess it’s hard to tell which meds alone has the greatest impact, but the combination has helped me turn the corner. I’m hoping it continues as I help to taper to 8mg shortly.

I’m even thinking that my body maybe producing it’s own steroids as some days I seem to have far more energy that I should have

[PMRpro Ambassador in reply to SpaghettiWestern99]

Sometimes pred does that too - but it can be a false friend as you do more and the next day isn't so good!!!