PMR advise please

[Star_wars_fan]

Hi all a bit of background about my situation before I ask for your advice.

I was diagnosed with PMR when I was around Sept 2021 having started symptoms during lockdown, 2020, I was 54. I thought the stiff neck, shoulder and hips were due to working from home, Sitting at the dining table on wooden chairs and not moving much due to so many meetings!

I have since been diagnosed with osteoporosis too, despite taken tablets monthly to strengthen my bones. Last Oct I fractured three ribs without actually doing anything! Had signs of an earlier break and have fractured them since. I am now on a daily injection to strengthen my bones so fingers crossed.

All this happened whilst I was going through the menopause, starting a new job (week before lockdown), becoming a full time carer for my mum who now lives with us and carrying on working full time, from home. It’s been a challenging few years!

I haven’t seen a rheumatologist and have had little advice from my GP about PMR. I have read as much information as I could find on the condition but am unclear on a few things.

Is it something that once I stop taking steroids will just disappear or is it a lifelong condition as it’s an autoimmune disease?

Are flare ups and the return of the condition common?

In common to still feel stiff and in pain even though I’ve reduced to 2mg? I was on 3mg for six months and on 2mg since June.

Has anyone experienced pain and stiffness elsewhere ie knees, thighs, feet?

My job means I am sat down most of the working day. I am in a position at the mo where sitting down makes my leg, knee and thighs ache as does standing up. I am just uncomfortable and in pain whatever I do! Any suggestions or tips?

Will I always be in some sort of pain and stiff or will my full mobility return?

Does the fatigue go?

Many thanks in advance and apologies for the very lengthy post!

[piglette]

It sounds like you may have gone a bit too low on the pred if you are having pain. Dropping 1mg is a fifty per cent drop. Try increasing by 5mg for a week to hit the PMR on the head and then drop back to a bit above your current dose say 3mg, then try dropping to 2.5mg first. The tiredness is probably being caused by the adrenal glands waking up. They can take six months or maybe more to get back to normal after you get down to zero steroids. The PMR never actually goes away completely but goes into remission so it can raise its ugly head again if you are very unlucky. You should be back to normal eventually though, although a little older.

[Star_wars_fan in reply to piglette]

Thank you so much for replying and for the advice. At least there is some light at the end of the tunnel🙂

[piglette in reply to Star_wars_fan]

The frustrating thing is you want to be OK immediately and not have to wait, I find!!

[Star_wars_fan in reply to piglette]

Exactly I just want to feel like my normal self again and be able to go for long walks and run after the grandkids. I’m sure it’ll come… eventually!

[piglette in reply to Star_wars_fan]

The only trouble is you discover you have become older and stiffer!!

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

most of your questions are answered in this link - but main thing is PMR is a self limiting disease - so it comes seeming from nowhere [although there usually is a good reason], stays around as long as it wants and then goes into remission. Whilst you have it, you need to take steroids to control the inflammation cause by it…they don’t cure it -just manage it.

Once it’s gone into remission you don’t need the steroids any longer, and you should be able to return to normal life, albeit a bit older - and maybe wiser…😊.

healthunlocked.com/pmrgcauk...

Sorry to hear about osteoporosis - the ROS have a great site if you aren’t familiar with it -

theros.org.uk

As   piglette has said sounds as if you have gone too low - so maybe have a look at this re treating a flare -

healthunlocked.com/pmrgcauk...

Also please have a look at the FAQs - subjects in alphabetical order - lots of info on all things PMR and more… and please join the charity if you haven’t already..see this welcome post -

healthunlocked.com/pmrgcauk...

[Star_wars_fan in reply to DorsetLady]

Thank you very much for reply, for the advice and links to the relevant and useful sites. I will be taking a look at them! 😁

[Zebedee44]

Hi, it’s a bit difficult to advise when you haven’t given much information about your history with PMR but I note your bio also lists fibromyalgia which is a different kettle of fish. That may be causing a lot of your pain while the low dose of pred is most probably leaving you seriously fatigued while your adrenal glands try to recover.

Sadly the demands on your lifestyle are the likely to be the cause of your PMR and continue to demand more from your body than it can give. It’s impressive that you have come this far without advice and support from your doctor who should have told you that you are not trying to taper to zero but achieving a manageable QOL and pain level at a low enough dose not to be causing any ill effects . Your current symptoms suggest you are now struggling at too low a dose of pred and you could add 5mg for 7-10 days to knock the inflammation on its head before resuming at 3mg and tapering by smaller amounts over a longer period.

Congratulations, though, for keeping all the balls in the air throughout Covid and up till now, it’s time to give yourself some “ME TIME”.

[Star_wars_fan in reply to Zebedee44]

Thank you very much for responding. The ref to Fibro was due to my sister having it and so I’m interested in finding out what can help her as she is suffering so very much, bless her.

Thank you for you advice too, appreciate it. ☺️

[PMRpro Ambassador]

Hi and welcome!

"Is it something that once I stop taking steroids will just disappear or is it a lifelong condition"

That question is coming from the wrong direction so to speak! The pred has cured nothing, it is a management strategy, as long as the underlying autoimmune condition is active, creating inflammation on a daily basis in the early morning, you will need some pred, not necessarily as much as you started on but some. And it must be enough - too low a dose just leaves unmanaged inflammation which will build up until you are back where you started. Everyone is different.

The primary question is "DId the starting dose of pred have a good result with an almost immediate improvement of at least 70% in your symptoms overall?"

The second question is "At what dose did the symptoms start to reappear?" And as a codicil - How did you taper the dose and did you just keep reducing?

You have told us lots - answering my questions will tell us really important things for us to help you.

PMR does usually go into remission - but not in the 2 years many doctors think. Even when it does go into remission and you can stop pred without symptoms returning and worsening, the propensity for a relapse remains, though to be fair, total relapse isn't really very common and while second episodes do happen, they can be totally different from the first. A small proportion of patients have it for many years but typical is maybe 4 or 5 years with about half in total needing pred for longer but even they often get off pred eventually.

[Star_wars_fan in reply to PMRpro]

Thank you for responding and for the information and advice. I was really disheartened to read that the average time on steroids is 4-5 years and sometimes even longer! But now I know that and it’s not a case of tapering down the dosage every few months, I know now my expectations of being steroid by 2 years was unrealistic.

Thanks again for taking the time to respond, it is appreciated. 🙂

[PMRpro Ambassador in reply to Star_wars_fan]

You MIGHT be off pred in 2 years - about a third of patients are, But that still means that twice as many patients are on pred for longer so we see no point in not saying what is more likely. You won't remain at the starting dose, you will be on less pred than that, and as long as you are on ENOUGH pred, you are likely to have a decent QOL in terms of PMR. You will probably have some limitations but some of them come with aging anyway. I continued to ski - it was an injury that put paid to it rather than the PMR. I still travelled all over the world and had a pretty decent lifestyle. I just had to stop climbing mountains!!

On the other hand - this guy went back to his mountains and they don't come a lot bigger than the ones he did!

healthunlocked.com/user/Ski...

[Missus835]

Hi there. We have the "perfect storm" of things which could inflict pain and sometimes really difficult to differentiate where it's coming from on any particular day (or maybe all three). Same with PMR, osteoporosis, fibromyalgia (just diagnosed). 10 vertebral fractures, perhaps 11 as I think one went a couple of days ago. Feels like my ribs are sitting on my hips. It doesn't take much. Maybe up the Pred for a few days. It does not cure PMR, but manages the inflammation. My left thigh and knees have been acting up recently, on waking, getting out of bed and walking. GP has me trying to reduce Pred (eye roll). So currently at 8 mg. Tried gabapentin for the fibro. Huge depression side effect. Back to GP Tuesday for follow-up. Taking Tylenol #3 for the back spasm pain (and now front), but it's efficacy is next to nil after all this time. GP will not try transdermal patches as "opioids are not the answer". She tried to explain the 3 levels of pain. (Eye roll). As far as work goes, I had to retire completely as unable to sit at the computer for very long. Concentration was off too. Asking to go lay down due to waves of fatigue, wasn't fair to my Supervisor, although she was more than understanding. Sorry I don't have the answers, but there's lots in the FAQ. Also another forum here on Health Unlocked is Bone Health. Worth having a look. Just really wanted you to know you're not alone....and maybe vent a bit.🫂

[Star_wars_fan in reply to Missus835]

Thank you for taking the time to respond, I really appreciate it.

I am so so sorry to hear you have been through so very much and are suffering.

I don’t have fibro, my sister does and she suffers so very much with it bless her. I have osteoporosis and PMR. I understand now that my expectations of being steroid and PMR free after 2 years is totally unrealistic. So will need to be kinder to myself.

Thank you again for responding.🙂

[Star_wars_fan]

Thanks everyone for taking the time to respond. I was on 15 mg and reduced as follows( I don’t have the data for reducing from 15- 9mg)

Drop to 9mg 03/01/2023

Drop to 8mg 01/02/2023

Drop to 7.5 01/03/2023

Drop to 7mg 01/04/2023

Increase to 8mg 08/04/2023

4th May reduce to 7mg

4th June reduce to 6mg

4th July reduce to 5mg

Reduced to 3mg 20th Dec 2023

Reduced to 2mg 11th June 2024

Re the inflammation first thing in the morning- mine doesn’t ease it’s the same all day. I work from home and am sat down for very long periods of time due to the number of meetings I have. This obviously doesn’t help at all.

I’ve spoken to my Dr and she’s suggested increasing back to 3 mg which I’ve done it’s a bit better but as it’s only been a couple of days will see how it goes and may have to increase again, as I’ve feel I’ve taken a major step back.

My GP is contacting a rheumatologist for advice and I’ve had more blood tests.

Thank you for replying.

[DorsetLady PMRGCAuk volunteer in reply to Star_wars_fan]

Many find that reducing once you get into single figures it’s better to only drop 0.5mg a time… it’s then easier to know when/if an issue arise.

In fact the guidelines do also say once below 10mg, to reduce 1mg every 4-8 weeks.

Honestly I doubt a return to 3mg will be enough to sort things… and then you dithering about trying to get things under control, It would be better to use the flare protocol as contained in this link - you get the flare under control pronto - and then you can drop back to just above the dose that caused the issue… and don’t view as a setback.. but as managing your PMR.

healthunlocked.com/pmrgcauk...

[Missus835 in reply to DorsetLady]

Hi DL. Since my GP is not a fan of the DSNS tapers and would only allow me 8 mg per day for 30 days (two weeks ago it was 8.5 becx I had some leftovers LOL), then 7, 7.5, then 6, 6.5, etc. I'm trying 7.5 mg for 14 days and then 7.0 for the next 14, so down .5 mg every 2 weeks. That way there's no drama at Rx refill time and absolutely no wiggle room. The pills are counted, so exactly enough for 30 days. So far seems ok. It's very stressful becx I'm thinking in the back of my mind, what if there's a flare? Last flare she said I had gotten myself into the mess and can't expect them to get me out. "It's not a flare, it's arthritis" (which I really don't have). Come to find out I also have fibro. Ugh...

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

Karma would be if she suffers from PMR in future and is treated by someone as uncaring as herself. But I guess that’s hoping for too much!

What a nightmare for you, and the stress of her attitude is making things worse. …

[Missus835 in reply to DorsetLady]

I don't wish this on anyone, but I dunno how to get across to her just how acute this is...and the specialists just keep throwing me back in her lap. It's the right runaround it is. Thanks DL. ⚘️

[PMRpro Ambassador in reply to Star_wars_fan]

At what dose did things start to get worse? Do you know?

[Star_wars_fan in reply to PMRpro]

Apologies for the delay at 2mg back up to 3mg but will take advise from Dorset lady et al and increase to 5 for a while as I am still quite stiff. Thank you.

[PMRpro Ambassador in reply to Star_wars_fan]

If you mean our recommendation to use the flare protocol - that isn't increasing TO 5mg, it is increasing BY 5mg above where the flare happened for a week or so. Quite different and it clears out accumulated inflammation much more quickly and efficiently. Though if you are only stiff, going back to 5mg might be enough, If you had done the flare approach a month ago, you'd be long back at 3mg by now and sorted!

[DorsetLady PMRGCAuk volunteer in reply to Star_wars_fan]

As PMRpr has said increase by 5mg, not up to...as link states.

[Star_wars_fan]

thanks both will do