PMR remission? What determines it?

[Tiggy70]

How do doctors/Rheumatologists actually determine when our PMR is in remission?

I’m 3 years into my PMR journey and thought I was quite clued up on the illness. I thought I would be in remission when I have tapered off the Prednisolone and no longer have the aching/pain in my shoulders and hips.

I ask the question because in a recent follow up letter from my Rheumatologist (the appointment was actually last April!!) he has written “Her Polymyalgia Rheumatica is currently in remission “. How can he come to that conclusion when at the time I was on 9.5 mg Pred and was having some aching. I don’t know whether to ignore his comment or get back to him and question him about it. My next appointment with him is in December. Tiggy 🌸

[SnazzyD]

Hmm, would love to know his secret. Even at 3mg you can’t be sure until you’re off all Pred for some months. I’d be asking what their evidence base is; 9.5mg isn’t insignificant. Perhaps they are the sort who think that after 3 years it has to have gone. If you want to fight that, arm yourself with some papers that say it doesn’t work like that.

[Tiggy70 in reply to SnazzyD]

Thanks for your comments SnazzyD. To be honest I don’t feel up to the fight with my Rheumatologist at the moment. Since seeing him in April I had a flare in May/June whilst try to taper by 0.5 mg. I had to go back to 10 mg. I’m currently trying another slow taper by .5mg. I’m two weeks in and keeping my fingers crossed it works this time.

[Karenjaninaz in reply to Tiggy70]

It could be ana clerical error. I wouldn’t let it go. What if an associate reads that and then refuses to prescribe pred?

[Tiggy70 in reply to Karenjaninaz]

Fortunately my Pred is prescribed through my GP and they don’t seem to communicate with Rheumology!!

[PMRpro Ambassador]

One of the things that never ceases to amaze me is how little they appear to understand about PMR! Though I do admit that the language they use is also very confusing. Your PMR was in drug-induced remission at the time, you were on enough pred to manage the inflammation so your symptoms were minimal. Hopefully, in the meantime you have tapered the dose and are STILL symptom-free and still in drug-induced remission despite being on less pred. One day you will taper the pred dose and get to zero for 6 months and no symptoms will resurface - THEN you can suggest you are in remission with no qualification!

It is much the same with almost all autoimmune disorders - there are no cures, the aim on the part of the good doctors is to manage the symptoms as best is possible with the lowest amount of medication. Some, PMR/GCA is felt to be one, reduce in disease activity until a state of remission is found even without medication but there remains a propensity for all of them to reactivate at some later point. In many, the treaments used calm the immune system down enough for symptoms to disappear for months at a time, sometimes longer, but later the disease starts to ramp up in activity and more medication is required.

[Tiggy70 in reply to PMRpro]

Thanks PMRPro for your reply. I can see how he might be looking at things from a different perspective but I just don't have much faith in him. I guess that reading that I’m in remission and certainly not feeling it touched a nerve, particularly at 5.00 am today when the daily surge of inflammation kept me awake for over an hour. I’ll query his comments at my next appointment in December. Thankfully we have you and our other ‘experts’ to guide us through these dodgy diagnoses 🌸

[PMRpro Ambassador in reply to Tiggy70]

I know - I think something that needs to be brought to their attention is that patients' understanding of language and theirs is different. Lots of terms in medical speak that are used as a sort of shorthand can be upsetting to a patient. Even the use of "patient denies ..." in notes can feel hurtful when all YOU said was "no, I haven't had that ..."

What dose are you on at present? Do you wake during the night for the loo?

[Tiggy70 in reply to PMRpro]

I’m on day 13 of a slow (5 week) taper from 10 mg to 9.5. It varies as to whether I need to get up in the night for the loo. Probably about three nights out of seven. I’m type 2 diabetic and on iron tablets twice a week which I find makes a difference. I have been waking most mornings around 5.00 am for the past couple of weeks with the weirdest feeling spreading around my body. I’m thinking it could be the IL-6 being released?

[PMRpro Ambassador in reply to Tiggy70]

I used to feel that so it could be. I wondered if you were up in the night and could take your pred before 5am - 2am is the ideal time to take it to deal with the early morning shedding of inflammatory substances.

[Tiggy70 in reply to PMRpro]

Thanks, it’s worth a try. Once it wakes me at 5.00am I can’t easily get back to sleep. If I take it around 2.00 am do you think it would affect me later in the evening when the Pred effect is wearing off. I usually take my Pred around 10.00 am. I’m a night owl and go to bed around 12.15.

[PMRpro Ambassador in reply to Tiggy70]

When you take it at 2am, then the pred has far less to do as the inflammation never gets established. If the antiinflammatory effect doesn't last the full 24 hours, splitting the dose will often achieve that. If you do that, then often you can shuffle the doses so you aren't needing it in the middle of the night but choose 2 more convenient times.

[Tiggy70 in reply to PMRpro]

Thank you. It’s certainly worth a try. When I first started with Prednisolone I took it before bed but had trouble sleeping. I was told to take it after my breakfast as I’m prone to IBS flares. I could try taking half (5 mg) at 2.00 am with some yogurt and the rest (5mg or 4.5 as I’m currently tapering) with my breakfast. “Nothing ventured nothing gained”.

[Markandevie in reply to Tiggy70]

works for me. I was suffering terribly in the mornings up until 2 weeks ago when I started to take at 2.30/3 a.m. and the difference has been remarkable. Yes, I still have slight aching of the shoulder arm and some stiffness of my hands but nothing like I was previously. I am on 10/10.5 mg and reducing 1/4 a week. All the very best.

[howtotaperdown in reply to PMRpro]

that is interesting and I might have missed this in the archives... so the inflammation 'comes out' or goes around the body at 2 am? do you know why? and is it the same if you are sleeping really badly that day, or ok?

[PMRpro Ambassador in reply to howtotaperdown]

No, not at 2am, at about 4-4,30am, But you have to take prednisone at 2am for it to be peaking in the bkiid by 4am, it takes about an hour to be absorbed and another hour to pass through the liver to be transformed into prednisolone which is the active form. Prednisolone can be taken at about 3am as it is ready to go.

The substances are not in themselves inflammatory, it is the quantity that makes the difference when the immune system becomes deranged. They are shed in the body as part of the circadian rhythm that governs all bodily preocesses. One bad night won't alter it but long term shift work or regularly going to bed very late and sleeping late in the morning will change the pattern but it it doesn't do so in response to a few nights - that is part of the problem with irregular shiftwork patterns as the body is having to function out of synch with its circadian rhythm,

[DorsetLady PMRGCAuk volunteer in reply to howtotaperdown]

It’s mentioned in my intro/info post -

healthunlocked.com/pmrgcauk...

[autumnlass in reply to PMRpro]

Very much ‘upsetting to patient’… last visit to Rheumy was told I looked very ‘cushingoid’ and worse than my last visit to him in March… 😬

[Tiggy70 in reply to autumnlass]

I was told I looked cushiongoid by the chap doing my last DEXA scan. As if we don’t already hate it without people drawing attention to it😩

[DorsetLady PMRGCAuk volunteer in reply to Tiggy70]

Me too. Probably shouldn’t say it, but it’s probably a male thing, and mainly said to females!

[autumnlass in reply to Tiggy70]

It’s really an unkind to say when one feels vulnerable enough already. 🤐🤐🤐 Why don’t they?

Although I told the Rheumy that I knew that anyway - and what was the alternative?! His answer Methotrexate!

[PMRpro Ambassador in reply to autumnlass]

WRONG!!! If MTX worked reliably for PMR they would use it all the time. They don't ...

[autumnlass in reply to PMRpro]

I just button my lip and hiss when I’m home!

[Tiggy70 in reply to autumnlass]

I have a regular battle with my Rheumy over taking MTX but that’s another story. I’d need to be quite desperate to try it!

[dancersize2 in reply to Tiggy70]

My rheumy added the MTX when I was stuck on 6.5 pred for six months,. It did help me reduce and after four years I've stopped the pred. I wanted to stop the MTX too but then the comment is that most people on MTX don't ever get off it. Now my diagnosis is rheumatoid arthritis so still on MTX. I do feel much better and am able to do most things I need to so not really a problem and if the MTX protects the joints, I guess it was lucky I was on it. It did take me a year after stopping the daily pred to be free of the need of it and free of need of daily pain killers like panadol or iboprofen. Good luck with your reduction.

[Oboes22 in reply to Tiggy70]

After just 2 years my Rheumy wanted to prescribe MTX as she thought I was not tapering fast enough. I refused because of reading about possible/probably side effects and knowing someone who had a horrendous time when taking it. I explained this but She still asked why, I said ‘it’s my body’. She then discharged me! Ok so I am still tapering but am trusting all will be well.

[PMRpro Ambassador in reply to autumnlass]

As Tiggy said - as if we hadn't noticed.

[borednow in reply to autumnlass]

Well I bet that made you feel a lot better. You've got between now and your next visit to think of something suitable crushing to describe him - and make sure you tell him!!

[Thelmarina in reply to PMRpro]

That is so true! Having gone through the disgusting preparation for a colonoscopy, doing precisely what I was told and more - I was mortified to read that my bowel preparation was poor. Fortunately my consultant niece laughed and told me it was nothing to do with me just a comment on the result of the preparation! Phew! Self respect and fairness restored 😂

[PMRpro Ambassador in reply to Thelmarina]

Given how often they say that - wouldn't you think it might suggest a review of their protocol?

[Thelmarina in reply to PMRpro]

My current mantra is 'administrative incompetence.' we are auffering from a couple of decades of austerity and all the chickens are now coming home to roost - understaffing, underfunding and insufficient competent and experienced managers. Rant over!

[PMRpro Ambassador in reply to Thelmarina]

And too many non-HCPs carrying clipboards ...

[Fries in reply to PMRpro]

Very useful info here. I'm still on the journey (since July taking steroids). I find this forum advice very informative and don't always agree what is said but it is useful to look at and use your own judgement. I am very lucky in that I have a good relationship with my GP and the Rheumatology Team. Thank you for always giving sound advice.

[DorsetLady PMRGCAuk volunteer]

Her Polymyalgia Rheumatica is currently in remission

Can we please borrow his crystal ball 🔮 - thats the only way he’ll know…unless you’ve been off the Pred for at least 3months (sometimes longer ) and no return of symptoms.

There is no guarantee that your PMR will be gone when the thinks it should (it has a mind of it’s own) -and neither does it stop just because the course of Pred is completed or you don’t have raised markers -as we say time after time -symptoms, symptoms, symptoms…

[Tiggy70 in reply to DorsetLady]

Thank you. I know I’m not in remission but reading his comments has upset me a lot. I’m seriously considering try to get a private appointment with Rod Hughes or someone who knows what they are talking about!

[DorsetLady PMRGCAuk volunteer in reply to Tiggy70]

That's probably a good idea, if only to put your mind at rest....don't know where some of these people get their ideas from...off the back of a cereal pack springs to mind...but that's no help to their patients..

if you do see RH or someone else I'm sure you'll report back...

[Tiggy70 in reply to DorsetLady]

Do you know of any other good Rheumatologists apart from Rod Hughes. I just know his name from reading it in other posts. I live in the Midlands but would be prepared to travel and do an overnight stay if needs be. I started privately 3 years ago with the head Rheumatologist at my local hospital. He just wanted to take my money and was just as useless as the NHS one I’ve got now. Thank you 🌸

[DorsetLady PMRGCAuk volunteer in reply to Tiggy70]

No sorry, but PMRpro [who will also see this] is the person to ask or maybe raise a new post asking the question… saying what you’ve said above re where you live and willingness to travel…

[PMRpro Ambassador in reply to Tiggy70]

The best others I know don't do private work as they do research. You could put up a post asking for recommendations but the Midlands has been a bit of a desert - not as bad as Wales mind! MrsNails had a good one at Oswestry/Telford I think but don't know who.

[Deyazlex in reply to DorsetLady]

I’m an avid reader of this site and it has helped me considerably to the point of deciding, after receiving a surprise rhumy appt after 7 yrs, not to take it up - if it ain’t broke, don’t fix it. Their reputation seems they do the opposite!!

[DorsetLady PMRGCAuk volunteer in reply to Deyazlex]

Why have you suddenly got an appointment? Is it because GP thinks you should be off Pred by now?

But if you are at a very low dose, and are happy on that, as you say - why meddle?

[Deyazlex in reply to DorsetLady]

Thank you Dorsett Lady for yr reply. I think I recall being informed a couple of years ago that I might get an appt but there was a long waiting list!! I have just increased to 4mg after lengthy time on 3.5 but aim to reduce back down. 🤞 Was on 2mg for at least 2 yrs a while back but aches/pains lead me to increase slowly. I have no probs with repeat prescriptions so far so don’t bother gp, I get any queries answered through this site. You’re very reassuring. Thank you everyone

[DorsetLady PMRGCAuk volunteer in reply to Deyazlex]

Actually increasing slowly is not the best plan… if you flare you need to catch it quick with short sharp burst of extra 5mg for a week or so. You should then be able to return to just above previous lower dose… hopefully it won’t happen again, but if it does look at the advice in this link -

healthunlocked.com/pmrgcauk...

[Deyazlex in reply to DorsetLady]

Thank you for that, have read and I believe I had been over active having felt good for some time, stupid me. Feeling ok again now so will heed the warning. A bit catch 22, trying to maintain muscle tone and mobility yet being mindful of consequences - hey ho 😄

[DorsetLady PMRGCAuk volunteer in reply to Deyazlex]

Oh yes, it is a balancing act for sure….😊

[piglette]

Rheumatologists are very lucky they have a magic crystal ball that tells them when we are in remission. Unfortunately no one told the PMR it was supposed to be in remission.

[SheffieldJane]

He can’t, more’s the pity. It would be so useful. Perhaps he means that the acute phase is under control. Only you will know by how you feel consistently. I am not there yet myself so it is a kind of nirvana to look forward to.

[Tiggy70 in reply to SheffieldJane]

Hi Jane, Yes, like you it’s something on the horizon I’m looking forward to reaching eventually although I know at my present pace it could take quite a while. I think that the Rheumatologist saying I’m in remission when I know I’m not just knocked me off my perch - these days it doesn’t take much🤪

[DorsetLady PMRGCAuk volunteer in reply to Tiggy70]

I think the problem is they mean clinical remission, not the complete remission we talk about on here.

..and to be honest the guidelines don’t help as they state “remission” once the PMR is under control - see this from recent recommendations regarding tapering protocol.

PMR recommendations

[Tiggy70 in reply to DorsetLady]

So confusing 😖. Thanks for everyone’s replies. I’m feeling much better now 🌸

[Earthangel59]

I wish I knew. I’m two years in and when I got down to 5mg I had a flare. My rheumatologist reluctantly raised me up to 7mg but started me on methotrexate in May as well as Prednisolone. I’m now at 5.5mg but still have some pain. When I saw her in June, she looked at my hands, asked me to lift my arms, put some figures into her computer and the computer came up with me being 1% in remission (yes one percent)!

On that basis she was happy and doesn’t want to see me until the end of October but I’m still baffled and feel fobbed off.

[PMRpro Ambassador in reply to Earthangel59]

" the computer came up with me being 1% in remission (yes one percent)!"

And THAT is where the use of AI in medicine turns into comedy! PMR is there or not there, no "1% remission"

[Earthangel59 in reply to PMRpro]

I agree!

AI is dangerous in my humble opinion.

My faith in my rheumatologist took a nose dive for sure.

If the future is technology telling humans how that are progressing and the trained medics bring overruled by it then the future is quite bleak.

I’m going at my own pace. I’ll decide when I’m in remission because only I know how I feel,

[Fries in reply to Earthangel59]

Good plan.

[Amkoffee]

I read in the comments that you're flaring again which sounds like you're not really in remission at all. I'm sorry to hear that. That must be very frustrating. On the other hand I've repeatedly told my rheumatologist I am in remission because my PMR pain is gone despite the fact that my inflammation markers are high. She now believes that my inflammation markers may be due to inflammatory arthritis or some other unknown factor. I do deal with a great deal of back pain and have osteoarthritis in several joints. But my PMR pain was significantly different from all of my other pain.