PMR-lite?

[Ashboy]

Hi everybody and my sympathies go towards all who suffer PMR more severely than I do.

I am an 89 year old male. When I first developed PMR some years ago, one of the major symptoms was that I had no strength in my legs. There was no great pain but using the stairs was very difficult. My GP diagnosed PMR and 10mg daily resolved my problems within about 3 months.

A couple of months ago, my wife suddenly developed the same problem. Once again, the GP diagnosed PMR and prescribed Preds. She made immediate progress in the same way as I did and I expect that she will be starting to taper her dosage shortly. I have also heard of 2 or 3 other elderly people who have had great relief from Preds

When I discovered this (wonderful) site, I was astonished to read of the severe effects that this illness can cause. Most correspondents on here seem to be on very high doses and to be suffering greatly. Neither my wife nor I has suffered any adverse effects from taking Preds - or from cutting them out. To us, Preds are marvellous which seems to be the opposing view to most correspondents. Are we living in a fools’ paradise?

Statistics indicate that 1 in 1200 of the population develop the condition every year which is about 50,000 in the UK! I realise, of course, that it is only the people who are more greatly affected by a disorder who will take the trouble to find a helpful source of information such as this website. However if, say, 10,000 visit this website, that leaves 40,000 who may not be suffering so badly!

To get to the point of this letter, what I am wondering is whether my wife and I are really suffering/suffered from PMR or is it possible that we do NOT have PMR but have merely had some of the more minor symptoms. Not that it matters what name is used to describe our symptoms but if there is a form of PMR-lite, it may be helpful to anyone diagnosed with PMR to know that it is probably PMR-lite which they have rather than the more serious form.

I shall be very interested to hear the opinions of the many people on this website who know a lot more about the disorder than I do.

[Yellowbluebell]

Hi ashboy, thats a very loaded question. I am one of those people who doesnt seem to suffer as much as others. Just because you dont relate exactly to other pepple on the forum doesnt mean you dont have pmr. It affects everyone differently and remember a lot of people have a lot of other illnesses going on at the same time. I am still new to pmr and i know others will be along later in the morning when the uk awakes to answer you more fully. Good luck to your wife on her pmr journey and dont be afraid to ask questions. There is usially someone around to help.YBB

[Marilyn1959]

What a lovely positive post Ashboy. Sorry to hear your wife has joined the PMR club. I have no scientific answers to your question but resolution of PMR within 3 months does seem highly unusual. When were you diagnosed? Are you / were you off pred within 3 months? Or have you been taking pred for three months?

I ask since for first 3 months on pred I had the 'pred' euphoria and wondered what the people on this site were going on about whilst at the same time considering myself very lucky I wasn't as bad as they were. However two years on I now know what they were talking about unfortunately. Therefore I am wondering if you are 'cured' or simply at the ephoria stage of the journey.

[Hidden]

I think there's a case to be made that there is a PMR lite as you put it. Some people seem to have a version which as you describe appears is treated and goes into remission in 12 to 18months with few or no relapses. Some men on the forum, and I said some, seem to have a version where they have a "shorter" version.

We often have to remind new members that some of people visit a few times, and like you have few problems so we never see them again. That not everyone will have issues discussed on the forum to the extent that some do.

PMR itself isn't a true condition in the sense we often think. It's a conglomeration of symptoms clumped together under the title so we all probably all sit on a continuum somewhere with other add-ons and conditions intersecting us. As pmrpro has said numerous times you have/had ashboyPMR and I have poopadoop PMR (or something like that!). There's a core set of symptoms we get off the shelf, but other symptoms are bespoke.

[Peggy76 in reply to Hidden]

Hi, I love your positive attitude I also have osteoporosis my spine hips knees & in my neck rib cage & also have ckd stage 4 &heart failure,So am limited to only being able to take paracetamol & small dose of oxynorm due to my kidneys please any advice welcomed the pain is indescribable and makes me feel so ill. I can have steroid injections 2 times a year only . Regards Peggy 💕

[Hidden in reply to Peggy76]

Hi Peggy, I am afraid the one thing I would have suggested you know about and that's capsaicin cream. It is hot! You can develop and intolerance to it if used too much and too much used. I see you asked in another forum about reducing the pain med. If you do so ask you Dr. It's some I have done once my body tolerate the highest available dose so it no longer provides any pain relief. I go down as far as possible very, very slowly but NEVER EVER without Dr supervision, especially when you are ...sorry... older. The last resort for all pain....bed and a hit water bottle, heat pad. I wish you all the best. 🌻

[Peggy76 in reply to Hidden]

Good evening. I’m sorry I can’t fully reply to you tonight,but if it’s OK with you I will tomorrow so appreciate you replying have a nice evening &God bless you.

Peggy 🌹

[Spittal9]

Hi Ashboy

Like you I sometimes wonder if I really have PMR as my symptoms are mild compared to many others on here. A month before my sixtieth birthday in July I became very unwell, lots of pain, fatigue, etc. Saw my GP, who was great, who took bloods and checked in on me by phone every day for four days. After four days and the blood results back she sent me to hospital where I stayed for two weeks. After endless blood tests and scans for all sorts of things, to rule them out, I was diagnosed with PMR. Prednisolone brought what appeared to be instant relief. I was sent home after two weeks on 10mg. My GP is surprised it was such a low dose.

Since then I've been mostly okay but still fatigued at times and get pains in my legs and back. My GP is really great and is listening to me and although she recently talked of reducing me from 10mg, I suggested I stay at 10 mg for now, which she's happy with. She suggested upping the Pred to help alleviate the pains I'm having in my legs. We're waiting on blood results next week to decide what to do.

I've spoken to her about this forum and the great knowledge and advice that is readily shared and about slow tapering. I think she's happy to go along with whatever I suggest.

[PMRpro Ambassador]

It comes in all shapes and sizes - and it also greatly depends on expectations and what you need/want to do. It is far worse when you must work, for example, or if you have other things going on at the same time. The very high doses you note are probably for GCA - related but at the other end of a spectrum where the initial very high doses are required to prevent permanent loss of vision.

I don't have severe symptoms on pred - I suppose I probably did when I wasn't on pred for 5 years at the start but I saw them as something I had to live with, despite having been previously fit and only in my early 50s, since the doctor couldn't offer any explanation for the pain and stiffness except age. It has, however, lasted a long time, 15 years and counting. Life without pred doesn't bear consideration.

But do you mean resolution to get off pred altogether in 2-3 months or just to feel human again but still on pred? Those are 2 very different things. There is considerable speculation that there is a variety of PMR that does only last a short time. But PMR is not the disorder, it is the name given to the outward expression of an underlying condition and there are several including some cancers and various other autoimmune disorders. Dealing with the underlying cause in those cases leads to resolution of the symptoms.

[Kathymilner]

Hi Ashboy,

, your post is very interesting. My mother had PMR when she was around 85yrs old and although she was in a lot of pain, she took steroids and managed to come down in in under a year and more or less got over the initial bad pain although she did stay on 5ml for about 2 years. I have had PMR for two years I managed to get down to 4mg in Feb. 19 and my symptoms came back with a vengeance and I had to go back to 60ml and work my way down again. I am on 5mg now so will go very very slowly and hope to get off them by the end of the year. I wonder if it is an age thing as my mum didn’t have it as intense as I have. Good luck to you both. X

[PMRpro Ambassador in reply to Kathymilner]

Why did you need to go back to 60mg? Especially if you only have PMR. That is a dose for GCA - PMR should not require more than 30mg and even that is unusual. When you flare like that it is almost always due to overshooting the dose you need and adding 5mg to the dose where the flare happened is more often than not enough. At worst, 15-20mg should be adequate.

[stellafmdm in reply to PMRpro]

That works fine for me, but unfortunately it also does my head in!!!! I am on 10mg and plus 5mg makes me a total idiot!! I'm not sure which is worse, being achy or being an idiot!!

[Kathymilner in reply to PMRpro]

Hi PMRpro, Sorry I put the wrong dose, my go told me to go up to 10 but that didn’t control enough so I went up to 12 and that did it. Because I am type1 diabetic I started nearly two yrs ago on 20. I was very ill at the time with a really bad chest infection but you just have to through things and it’s hard sometimes but we do get through.

[cranberryt]

I would be curious what tests your GP ran to get to the dx? Often PMR is a dx that is made when everything else is ruled out (RA, lupus, lyme, thyroid, etc) and your inflammation markers are still high. I was a textbook case with my pain coming on quickly, on both side of the body, involving muscles in legs, shoulders, arms and neck. And I had the typical problems getting in and out of bed/cars, dressing, walking after resting and had less pain if I kept moving. ESR elevated. That said my dr. said all autoimmune disorders can present differently for everyone and most respond to steroids. With PMR, most people find that the pain is gone within 3-7 days on steroids. It truly a dramatic change. The disease is still there but the debilitating pain is gone. I would be curious to know more about your symptoms and the course of your treatment to know if it fits the most common presentation of PMR. Of course, being different doesn’t mean you don’t have it, but based on your initial description it is kind of hard to tell how well it fits the typical model.

[SheffieldJane]

You might be thinking of people who have GCA. Who suffer more.

Or perhaps your good wife and yourself are made of iron girders, as we ( used) to say in Scotland!