How best to manage my PMR symptoms?

[Moon_beam]

Hi, Im new to the group having had a PMR diagnosis 4 months ago. Really lovely to see the thread and the support that you are able to offer. Im wondering if you all can enlighten me on how best to cope. I’m 55 with no history of ill health ever, and find PMR difficult to manage. Although initially when I started on prednisolone 15mg, all my pain went away, since I have been tappering the dosage down every month Im experiencing shoulder girdle and pelvic girdle pain. I haven’t needed to take paracetamols since started on steroids, apart from having poor quality of sleep and suffering from insomnia. Since I started on paracetamols for the nights, my sleep has been better in the last 2 weeks. I’m now on 9 mg and is due to reduce to 8mg next week. I have found that after I have a nap after lunch, the girdle pain improves and there is less fatigue. Should I put up with the discomfort? or should I increase the steroids so that I could be pain free and less fatigue? Am i being ambitious and too impatient for wanting to get down to single digit dosage and continue to reduce the steroids further?

[DorsetLady PMRGCAuk volunteer]

Hi and welcome.

Initially would say, too fast a taper (either in size of each reduction or time) which is why you are getting a return of symptoms.

You are given a high dose initially to mop up the built up inflammation prior to diagnosis- which obviously worked. The aim then is to reduce (preferably not too quickly) to find the LOWEST dose that gives you the same relief as the initial dose did.

Have a read through this so you have a better idea of your illness - healthunlocked.com/pmrgcauk...

Read the replies as well, they will give you more help.

You do need to speak to GP - and get yourself back on track.

[Moon_beam in reply to DorsetLady]

Hi DorsetLady,

Thanks for your prompt reply. My doctor decided to continue in tappering down my pred. dosage as my inflammatory markers returned to normal, but my symptoms persist. Can’t understand why my symptoms are worsening if my inflammatory markers were normal?

[DorsetLady PMRGCAuk volunteer in reply to Moon_beam]

The steroids are keeping your inflammation marker artificially low, and symptoms very often appear a few weeks before those inflammation markers start to rise again. Which is why we always say - symptoms are the key!

You’d be surprised the number of doctors who think the same as yours - even those that should know better!

[Moon_beam in reply to DorsetLady]

Thank you DorsetLady, I will arrange another check of my inflammatory markerS and get my meds reviewed based on my symptoms. I am working my way through the threads and your reads too.

[YuliK in reply to Moon_beam]

As Dorset Lady says, markers are not always

correct and can throw the doctors a false reading. In the meantime we are still suffering.

You will need to be your own doctor and learn to understand your own body and the various symptoms.

You have arrived to the right forum, where you will get plenty of good advice.

Good luck.

YuliK 😷

[SnazzyD]

Hello, 4 months is not very long at all in the scheme of things and to be trying to gallop down the single figure ladder, might end in disappointment. Pain free doesn’t necessarily mean autoimmune activity free, it just means there is enough Pred to deal with the inflammation you’re chucking out while your body is attacking itself. Therefore, blood tests can be normal but only because of the steroid. If the inflammation is overwhelming the steroid it can be a while before it builds up enough to show on blood tests but symptoms come in much quicker. I was 54 when I was diagnosed with GCA the sister condition and at the time I was very active, busy, working and very fit. It is a shocker but one quickly learns that when one’s body is in such distress, we can’t force it to get better no matter how inconvenient and frustrating. Acceptance is key.

[Moon_beam in reply to SnazzyD]

Thank you for your info. You are quite right, acceptance is hard to act when doctors tell you that being age 55 does not fit the picture for classic PMR. This may be the reason why I’m having flare ups because I’m pushing myself to hard.

[SnazzyD in reply to Moon_beam]

If they read up to date info, 55 really does fit the picture. Often it says an average of 70 or most commonly 70 but that means ages either side too and 50 is the cut off. For some docs the 70 sticks in the brain. This is one condition that really doesn’t respond well to toughing it out, being brave and soldering on and trying to fit it round your life.

Which sort of pains do the paracetamol help?

[Moon_beam in reply to SnazzyD]

Taking paracetamols just makes me sleepy, so as I suffer from insomnia with the steroids, I thought I’d take it at bedtime to help with my sleep

[SnazzyD in reply to Moon_beam]

Ah ,so not pain.

[PMRpro Ambassador]

I'd also say this was too fast a taper and you have overshot where you need to be at this stage. Most good tapers would have had you at 15 for 6 weeks, 12.5 for 6 weeks and then 10mg - which means you would still be at 10mg now and probably wouldn't be in this situation.

Just because the markers have gone down doesn't mean the inflammation is well controlled but the fact you say paracetamol helps also makes me wonder if something else is going on. But if the diagnosis is PMR - you need enough pred to manage the symptoms which ALWAYS trump markers - as the guy in the video in the next thread on the list points out: treat the patient, not the lab results. They aren't always right ...

[piglette]

I think a rule of thumb is if you start to have any pain problems, don’t try and reduce for the time being and put up with it. PMR will always win the battle.

[Moon_beam in reply to piglette]

Thank you, have read DorsetLady tappering guide, looks like self management is also key

[alangg]

I agree with all that's been said.In my case, it took me 2½ years to come down from 15mg to zero - no more than 10% each taper, a 4 week taper with at least a week on the new dose before starting to taper again, and then not tapering at all if symptoms return or I was about to take on some work or stress, etc.

And, according to other posts on the forum, I was one of the lucky ones to have come off Pred so soon and 'relatively' easily.

So take it slow, use a pill cutter and a spreadsheet to tell you what to take each day and go by your symptoms and circumstances rather than a doctor's theory!

[Moon_beam in reply to alangg]

Thanks

[Avadip12]

Just wanted to say, that some times this can be a lonely , frustrating illness. And I wish I had a forum like this when I started my PMR 15 yrs ago. From my experience every time I lowered my dose my body went through 5 weeks of acceptance. over all the years I have PMR I never known why this happened as I reduced my dose in the recommended steps. People speak of adrenal insufficiency and having blood tests to test its function. My GP never offered that , he did offerESR andCRP test to see if I was having a flair up , but I have never had an increase in inflammation markers , even though I could barely get up out the chair. So I was left to cope with it. Then after 2 mths I would put the dose up my self as I was not functioning. This is not the case for everyone. My friend was diagnosed and a year later it’s all over and off steroids. Good luck with your journey and pleased you have this support and advise

[Moon_beam in reply to Avadip12]

Thanks, it has been a godsend to have found this forum and I now feel more positive about how to manage this illness.

[PMR2011 in reply to Moon_beam]

Support what other’s have said. Wanted to add...There are many posts on here about improving sleep. I found good practices (no screen time after dinner, no simple carbs in the evening even as a treat, dark room, no evening exercise etc) really helped. Your body will adjust as you eventually get to lower doses. In the meantime if possible naps can help. Hope you sort it out.

[Moon_beam in reply to PMR2011]

Thanks

[Mazxstitch]

I was diagnosed with PMR April 2019, started on 15mg Prednisolone. 15 months later, after yoyoing up and down under doctor's instructions, I was on 10mg.At that point I had found this forum and decided to follow a tapering plan. 9 months later I am on 4.5mg. A niggle now and again, but no pain.

[Moon_beam in reply to Mazxstitch]

Thank you Mazxstich, you have highlighted a realistic expectation of my likely journey.

[Arflane97G]

I started at 15mg for a month, then 12.5 mg for a month, 10 mg for a month and then dropped every 1 mg every month until I got to 4 mg, then 0.5 mg a month. I was never totally pain free - about 80% - but that was a huge relief. Afternoon naps and yoga really helped me and I know people’s experiences and symptoms differ but I was pretty determined to keep on a downward path and not increase the pred. The most I did was to stay on a particular dose for longer. Best wishes

[Moon_beam in reply to Arflane97G]

Thank you Arflane97G, you have hit the nail on the head, I haven’t been 100% pain free since on 15mg, and being on 9mg now it’s has been 70-90% painfree. Some days worse than others. Having been on this forum, I have learnt to adapt the tapering to my symptoms. I’m working part-time, so days following work are usually my recovery days.

[Loyd]

Hi moon beam - exactly what I did when I was diagnosed and because of Covid fear I tapered too fast then a disastrous flair that needed 30mg to control. Back down to 9mg and dropping a half mg a month. Bit sore in the neck so may slow further. Good luck I wish you success.

[Moon_beam in reply to Loyd]

Thanks

[Hosers2]

My “PMR” symptoms (neck, shoulders, hips, wrists and hands, showed up five years before being bluntly hit with all of them one morning, Fathers Day 2020.

2013-2015, my doc prescribed Simvistatin (for high cholesterol), which eventually turned me into an invalid. After reading many blogs (like this) about the effects of statins on people, I realized that might be the culprit. I stopped, cold turkey, and after two years of doctors telling me I needed rotator cuff surgery, carpal tunnel surgery, and hip replacements, the symptoms went away completely. Within one month, I was back in perfect health.

Bottom line; I believe Simvistatin caused those symptoms back then. And is totally responsible for my PMR diagnosis in June 2020.

[AdoptMeow]

Hello -- I have a white cat with a bit of calico marking named Moonbeam. You mentioned having more pain at night. Have you tried split dosing by taking 1/4 - 1/3 after dinner or before bed? For example, 7.5 mg morning and 2.5 mg evening or 6 morning and 3 evening. The paracetamol may help with the pain sensation, but it doesn't address the creeping up of inflammation when the morning dose wears off (prednisone is active an average of 18-19 hours).

[Moon_beam in reply to AdoptMeow]

Hi Adoptmeow, thank you for your reply and that of @PMRPro I’m not awake in the night with pain and the paracetamols are more for the extreme tiredness due to lack of sleep and waking with hot flush (?menopausal), but it’s a good idea that I will try as you are quite right, the symptoms are worse in the morning as They wake me up and I need my breakfast and my preds.

[AdoptMeow in reply to Moon_beam]

Natural vitamin E (d-alpha tocopherol, not synthetic dl-alpha) in the morning, then B-complex at night, can help with hot flashes and more restful sleep.

[Moon_beam in reply to AdoptMeow]

Are your recommendations for the hot flushes related to menaupausal symptoms or PMR? Currently persevering with black cohosh, not sure any good 🙁

[AdoptMeow in reply to Moon_beam]

I've only experienced them with menopause when I ran out of 400 IU natural Vitamin E complex. Black cohosh is good, but it can't make up for vitamin shortages.