Smile and the whole world smiles with you, cry an... - PMRGCAuk

PMRGCAuk
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Smile and the whole world smiles with you, cry and you..............blah blah blah!

Mike1964
Mike1964

Had my long awaited Rheumy appointment on Friday. Have been struggling with PMR? since Feb 2018, GP agreed to try me on 15mg of Pred, fantastic improvement after 2 days, went from being unable to turn over in bed to going out for a 5+ mile walk. After stumbling across this wonderful site and being completely blown away by the love, support, encouragement and really helpful advice I rather suspect I've actually had it for over 2 years and had a massive flair in Feb. I have no raised markers in my blood, it would seem a bit of a sticking point. Anyway......... I arrived for my appointment rather pleased with myself (Will I never learn?) I had typed a full history of symptoms also jotted down questions to ask. Mr Khan slowly read my medical history then actually stopped to peer over his glasses at me (Rather took me back to school when I "Accidentally" set off that fire alarm. I then heard the haunting words "You may, and I repeat, you may have PMR" He then elaborated further and said that as I had no raised markers in my blood, at this he paused for effect and again peered over his glasses, It was still possible I had it, strangely as he said this he appeared to be sucking on a lemon, he really did have the most amazing expression on his face, I'm not entirely convinced he fully believed what he was saying! I'm afraid after this the rest of my 10 minute appointment passed rather quickly, a small voice that sounded remarkably like my own kept saying inside my head "Bloody hell, I've known since Feb that I may or may not have PMR" being somewhat deflated I found myself trotting outside not having asked anything else :-( He has given me a prescription for AA, I'm only 53 and had a recent done density scan that showed on issues so that will quietly go in the bin, he also prescribed Pregabalin that he thought may help with the fatigue. Usual advice on Pred, drop from 18 to 15 immediately then reduce by 1mg every 2 weeks. I'm feeling a bit calmer now but still in limbo, still at least the sun is shining and it may yet be coming home! :-) Thank you all for listening (Or indeed reading!)

55 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Oh Lordy why do they place so much credence on blood markers??????

Symptoms all the way!

Did he suggest what he thought it might be if not PMR?

Are you seeing him again? If so keep notes on what happens if you follow his instructions (I guess you are going to be a good boy!) - so if it all goes pear shape you have ammo!

Keep the faith......on all fronts.🤞

Mike1964
Mike1964
in reply to DorsetLady

Thank you DL. To be honest once out I rather quickly realised the impertinent questions, why do you think I may have PMR, why do you think I don't have PMR? Oh the benefit of hindsight! :-) How are things in Dorset?

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Mike1964

Bloomin’ hot! And filling up with holidaymakers - god bless ‘em 😁 Still it’s too beautiful not to let others enjoy.

Lovely if you haven’t got to do anything, still “mustn’t complain” as the saying goes.

Ahh, hindsight..yes well.

Stick with us...you know it makes sense😏 of course we’re all medically trained, or should that be strained 🤦🏻‍♀️

Take care.

Mike1964
Mike1964
in reply to DorsetLady

Lol, is that trained, strained or restrained :-) I'm in Eastbourne so I know what you mean about busy roads, but as you say It's far too beautiful not to enjoy and share. Kind regards, Mike

Hello Mike,of course you must have PMR, because the steroids have worked so well and you now have much more energy. I think going on a 5 mile plus walk was perhaps a bit over the top,but l know how wonderful l felt when l was given the high starting dose of preds,l could not wait to get up at 5 in the morning to go and get on with some gardening,something l was unable to tackle when in so much PMR pain.l hope that you continue to feel better as you slowly lower the dose ,just remember to pace yourself and not overdo things. I wish you all the best.

Mike1964
Mike1964
in reply to Grants148

Thank you Grants, rest assured the 5 mile walk was a long time ago, sadly the deathly fatigue soon put paid to that happening for quite sometime I suspect :-(

Polywotsit
PolywotsitPMRGCAuk team member
in reply to Grants148

Sorry, but there's no 'of course' about it! There are many other conditions that 'mimic' PMR, and it's important to try to find out. Best to keep an open mind for now.

PMRpro
PMRproAmbassador
in reply to Grants148

Steroids have similar effects in several other conditions - which can present in a very similar way. Response to pred isn't a guarantee.

This is how my pred journey went, so I personally don't think the advice you got is completely awful, although an initial drop of 3 mg is too high. I was on 15 mg for about five weeks. Then I dropped, on doctor's orders, by 1 mg per week. She did tell me to stop reducing if I felt pain returning. This happened at 9 mg. i went back to 10, stayed there for no more than three weeks, might have been less, then started, with doctor's blessing, the dead slow nearly stop taper, which allows about 1 mg taper per month or six weeks. This has been successful for me. I was down to 3 mg within a year of starting, although that was two years ago and I am on 2 at the moment; it took about eighteen months for me to achieve my lowest best dose, which is pretty good going, and I remain hopeful that I will soon be able to start tapering again.

Mike1964
Mike1964
in reply to HeronNS

Hi Heron, thank you for the support. I'm confident things will get sorted at some stage, but boy it's certainly a bit of a lottery until they do! Wishing you the very best on your journey, kind regards Mike

Celtic
CelticPMRGCAuk volunteer

Mike, I think, if it were me, I’d be inclined to stick with the GP and ditch the rheumy as well as the AA....oh, and the 5+ mile walks for now until you are on a comfortable reducing regime.

Mike1964
Mike1964
in reply to Celtic

Lol, trust me Celtic the 5 mile walk was sadly a long time ago :-( The dreaded deathly fatigue has well and truly struck, some days It's a bit iffy if I can get to the toilet. Am in the process of changing GP, she is not altogether helpful, although to be fair I believe she just feels a bit out of her depth (As do I!)

Celtic
CelticPMRGCAuk volunteer
in reply to Mike1964

Mike, I’m sure that, like me, most of our friends on here will sympathise and empathise with the fatigue you are experiencing. Unfortunately, such fatigue goes hand in hand with autoimmune conditions, and the steroids can have a hand in this as well. I was known to just ‘crash’ suddenly whilst dining with friends. The good news is that it will improve as you reduce the steroids - meanwhile, don’t try and fight it but catnap whenever you can. One friend used to have what she called ‘duvet days’ quite often. I haven’t come across anyone else taking Pregabalin - perhaps someone might join in with any personal experience of this drug, which I thought was usually prescribed for pain. What I would say is that when I attended a Pain Management Course some years ago, those patients taking Pregabalin or Gabapentin were being advised to try and restrict their doses/wean themselves off it to avoid addiction. Hang in there: good days will come.

Mike1964
Mike1964
in reply to Celtic

Thank you Celtic :-) The very best to you too.

Can you follow up on questions via email? It might be interesting to find out what he thinks the alternatives to PMR are. I'll be curious as to how the Pregabalin works. Most of us here suffer from fatigue during our journey. Be careful of the tapering schedule. By 10 mg. You'll want to slow it down if not before. But as others have noted, symptoms rule - see how you feel.

Mike1964
Mike1964
in reply to TooSore

Thank you TooSore, That is a great idea, I will wait for his letter and see if I have an email trail. Boy I could have kicked myself once out, why are all these relevant questions so much easier to see 20 minutes too late!

I would go to the Dr who is giving you the most support. Sometimes it's the GP and not the specialist

Thank you Bunny. Am in the process of changing GP, she is not altogether helpful, although to be fair I believe she just feels a bit out of her depth (As do I!)

Hi Mike, thanks for an interesting and entertaining Post! :-)

Just to say...

1. Your early experience of the 'magic' Preds is quite typical. It's known in some circles as 'Steroid Euphoria' - where you can experience an unnaturally high surge of energy and a false sense of being 'cured' of PMR etc whilst the disease is very-much still alive. I know, been there and got the T Shirt. So, be careful and learn to know your (new) physical limits even if feeling 'great'. Pacing is All with PMR - and it's a long-haul to boot. Ask some of the PMR Veterans here.. ;-)

2. Your Rheumy sounds like he's broadly on the right PMR Trail, but I can understand his ambivalence due to either or both of: a): you being relatively young for PMR in terms of the typical age of patients presenting with symptoms (i.e. 60+), and b): your inflammatory blood markers (ESR / CRP) being within a relatively normal range. But maybe he doesn't realise that there can be anomalies in either case above? He should. Mmmm..

As for the AA: in your case, and with the benefit of a recent 'ok' Dexa Scan, I tend to agree. But this comes with the rider that I am not a medic and don't know your wider health context...

On Pred tapering (faster/ slower etc): I'm sure the forum Aunties and many others here will or already have shared their opinions and experiences. Often, GPs and Rheumies give arbitrary / standard tapering advice and don't understand the realities for their patients of dealing with the consequences of following a too-fast / by too much Pred reduction 'plan' in their own context.

As for the DF (Deathly Fatigue): I'm sorry to say it but, for many with AI (Auto Immune) illnesses of whatever type, this is often goes with the health condition, regardless of the efficacy of the treatment in controlling the other symptoms (i.e. pain, stiffness etc). In my opinion / experience - the DF is one of the worst of the various PMR symptoms. Yep, it can hit you like a proverbial train - mentally as well as physically - and you just have to learn to roll-with it if you can.

Either way, you seem to be taking all of this in your stride and seeing PMR as a Learning Journey as much as anything. That's a very good sign that you will cope well with all of the challenges along the way.

Please keep us posted on progress - and try to keep smiling in the meantime. 'This, too, will Pass'....?

Best wishes

'Uncle' MB :-)

Thank you Uncle Mark. I totally agree about the DF, it's a killer and just hits when it fancies, general pain in thighs and shoulders I can put up with (Of course being a man not quietly!) Wishing you well on your journey, Kind regards, Mike.

Welcome to the 50’s branch of the forum. We are told we are unusual but we keep coming out of the woodwork.

You bet...! :-)

(Previously very fit and athletic, age 57 at onset of PMR)

TooSore
TooSore
in reply to SnazzyD

Yup. 51 at onset, 52 at diagnosis. Issue that seems to be most difficult to deal with is the need to work. And in my case - teenage daughter (drama...) at home. My rheumatologist, who is quite good in general, thinks that as long as I take the prednisone I'm fine, almost as if I don't have PMR. Doesn't quite get how work stress affects me.

SnazzyD
SnazzyD
in reply to TooSore

Oh the teenager stress! Doesn’t help does it? I’m bloomin lucky we can survive without me working because I could not have driven to work safely let alone do the job. All I have had to contend with is feeling useless financially , loss of identity, career going down the pan, the list goes on. There have been silver linings though.

Mike1964
Mike1964
in reply to SnazzyD

Lol, sadly Snazzy I've been told I'm unusual since I was born! :-) Hope your journey goes well.

Thank goodness for this site to give us guidance with how to deal with PMR and the medical profession. I am 54 and have just stepped down to 10mg Pred from starting at 20mg in March. Has been a miracle drug for me so far so am a bit nervous about the lower levels. Good luck with your PMR journey . Enjoy the sunshine & good luck for Wednesday ( & this from a Scot 😁 ) .

Mike1964
Mike1964
in reply to catocat

Blimey, good luck from a Scot, no wonder you use a pseudonym! Still come the rugby season I'm sure you'll get your own back :-) The very best on your journey too.

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Mike1964

I certainly hope not ...on the rugby front that Is! 🤦🏻‍♀️

Mike1964
Mike1964
in reply to DorsetLady

Ditto, my step daughter brought me a Google cromecast for fathers day. Being old and not particularly interested in techie things I wondered why. I have since discovered you can plug it into the TV so you can watch Utube on it, have been having a bit of a rugby fest whilst off, was watching the living legend that is Mr Wilkinson and THE drop goal, also that rather special tour of Oz, 3-0 poor old Ozzies, almost! makes you feel sorry for them :-)

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Mike1964

Never! They hate us with a passion on the sports field.

Off it they’re okay though - well usually!

Not wishing to offend any on here, who obviously are the nice ones.

Mike1964
Mike1964
in reply to DorsetLady

Lol, indeed.

If everything on here resonates, your pains were bilateral you had the Pred miracle, then you’ve got it Mike. Keep calm as you were taper slowly, pace your activities, take your vit D and Calcium. Never show your cleverness to this man again.

Thank you for that, you truly made me laugh :-) Kind regards, Mike

Yey!

Pregabalin is prescribed for epilepsy, anxiety and nerve pain. I honestly can’t see it helping with our kind of fatigue. Scheduled afternoon naps seem to allow me to have a normal- ish time.

Hidden
Hidden

Hi Mike

Why on earth do they treat Patients like that?

Peering over his glasses sucking a lemon, l have a very clear image in my mind!

Like the Endo Guy who said l might have had a hangover or a Water Infection; I think l’d know!......

Perhaps see your GP when he receives the letter & see what he had to say? That may be a bit more enlightening!......

Good Luck

Mrs N

Mike1964
Mike1964
in reply to Hidden

Thank you for taking the time to post, boy your a very busy lady at the moment. Kind regards, Mike

Polywotsit
PolywotsitPMRGCAuk team member

Mrs Nails is right. Wait for the letter to come before coming to any conclusions. Can I suggest that, instead of looking at this situation from where you are now, imagine yourself looking back on it from five years in the future. In other words, take the long term view? Why did your GP refer you to the rheumatologist? Was it because there was some doubt about the diagnosis because of the lack of blood markers? Well, quite possibly. So the rheumatologist, who frankly knows a lot about other conditions that aren't PMR, and other conditions that might be mimicking PMR, wants to be sure about the diagnosis before condemning you to several years on steroids (especially as seeing as you are five months in, you are still on 15-18mg). This has to call the diagnosis into question. I always remember the Bristol study a few years ago that found that half the PMR cases being treated by GPs weren't PMR at all.

So now he needs you to reduce so that he can see what's actually going on in your body without the pred getting in the way.

I know that there's a temptation on the forum to assume that everybody here 'must' have PMR or GCA because we are all in it together and want to support each other and it's so good to have a community of people who know what you are going through. But the danger of this is that we might suffer a bit from 'groupthink'. So take everything with a nice pinch of salt and don't get too stressed - hopefully this won't take too long.

K x

Mike1964
Mike1964
in reply to Polywotsit

Hi Kate. Thank you for your very balanced and well thought out reply. Luckily with the Pregabalin I soon won't have to worry about getting stressed :-) I guess it's the frustrations, I have just been signed off work again, once ended will have been off for 3 months, I have to go back to work at the end of this. My wife is also seriously Ill, I was under immense stress in Feb when this all kicked off, unfortunately I'm still under immense stress, not good.

Suet3942
Suet3942
in reply to Mike1964

Oh Mike, you poor man. The stress can bring pmr on. At least us oldies dont have the added worry of having to go to work. Keep strong.

Mike1964
Mike1964
in reply to Suet3942

Thank you Suet. I must admit the 3 months off have been rather pleasant, am now starting to wonder if selling one of the children to fund my early retirement might be an option? :-)

Suet3942
Suet3942
in reply to Mike1964

A sense of humour is obligatory on this site. Lol.

PMRpro
PMRproAmbassador

Think I'd be asking for a thorough discussion with your GP with regard to reducing - especially at that rate! And I'm far from convinced pregabalin will do much - though it makes me wonder if he thinks it might be fibromyalgia.

Mike1964
Mike1964
in reply to PMRpro

It was all a bit weird. I went to A&E in April after coming back from holiday, admittedly I had been rather foolish with doing to much walking whilst away, had also reduced from 15mg to 12.5mg I just felt so ill, scalp really tender, pain in temples, felt like I had a fever, eyes really sore, felt like terrible pressure behind them. I was really concerned I was showing symptoms of GCA and thought I was doing the sensible thing by going to A&E. It was a horrible experience, ended up being basically ignored for 2 days then told by a consultant (Not a Rheumy) that he could categorically state I didn't have GCA, or indeed PMR as I was under 55. I told the Rheumy my symptoms then at the appointment, he started to talk about a biopsy then said it wasn't worth doing one as I had been on Pred to long then in the next breath he's telling me to reduce to 15mg immediately then carry on reducing. Basically I'm reasonably good at 20mg, pain in thighs/hips and shoulders and worst of fatigue appears when I drop below this Oh the joys!

PMRpro
PMRproAmbassador
in reply to Mike1964

You aren't wrong there calling it weird - the consultant was wrong, the guidelines say over 50 for GCA and for under 50s there is a different diagnosis (daft but there you are). And the disease doesn't read the guidelines: GCA happens in under 50s and I have posted various links in the past.

The more I read of members Rheumatologist visits, the more I am grateful my GP did not give me a referral and managed it via my symptoms in house.

Me? PMR diagnosed within 1 week of a blood test when I went to GP saying " help I can't walk" in July 2015. Seen 3 different GPs and 1 locum in practice. All have listened and been supportive and allowed me to reduce at my own pace, and referred for bone density scan which showed very strong bones, so no AA. My inflammation markers have been low ever since I started Pred at 15mg. I have read this forum since week1 and felt it helped.

Feel lucky.....tho they did miss the osteoarthritis creeping then accelerating in the background.

See if you can find a GP in your practice who will listen to you, and keep reading this forum of experienced patients.

Thank you Valnvaughan. Yes I'm too starting to think that Rheumy's are like 2nd hand cars, get a good one and your fine! :-) Glad things are going well with you.

Thanks for sharing your story Mike. I am having a similar experience with my Rheumy.

I had classic PMR symptoms beginning Dec17, along with severe pain in my knees (which I later found out through MRIs are due to chronic past injuries and deterioration). GP did blood work in April and my CRP was 29, but ESR only slightly elevated. I am 56 years old. He diagnosed PMR and scheduled appt with Rheumatologist and prescribed 20mg of Pred which I had a positive response to.

When I met with Rheumy 7 weeks later I had already tapered down to 15mg, blood work now showed normal EST and CRP. She was hesitant to confirm PMR due to my positive response not being higher (for me I guessed I was 80% better). Told me to reduce to 12.5mg for a month.

As soon as I did I began experiencing sore knees, shoulders, etc again within first 5 days, especially in the morning. Called Rheum office, told me to do blood work again and CRP was up to 10. Told to go up to 15mg again and she will re-assess me on July 18 as she is not certain I have PMR because my markers went up (technically my ESR went down??), and my response wasn’t as favourable??

When I see her again next week I will ask about

1) DidI taper too fast too soon (20, 15, 12.5 all in 6 weeks?

2) I am overweight, does dose of Pred not coincide with weight of patient? (PMR pro commented on bioavailability referring to an study where most PMR patients did well on a starting dose of 12.5 except larger male patients who weighed more)

3) is it not recognized that people in their 50’s can develop PMR?

4) I feel my response to the Pred was pretty remarkable even with pre-existing knee conditions that also contribute to overall inflammation.

Armed with the info I have gleaned from this forum and others, I hope to have a definitive answer as it is important I know what I’m dealing with to treat is properly. Having my husband at the appt for support will help as well. My GP still believes I have PMR.

I hope you get some answers Mile1964. Lots of wonderful suggestions and support here with ways to manage whether it be fatigue, tapering schedules, dealing with the medical system, medications, etc. I know it can be intimidating to face specialists, however you are the patient and your symptoms are a very important piece of the puzzle. Hang in there with the fatigue and try to find your own balance of rest, activity, diet. Keep us updated!

Mike1964
Mike1964
in reply to PMRCanada

Hi Canada. Thank you for your lovely encouraging reply. It is a bit of a pickle isn't it! Wishing you too all the very best. Kind regards, Mike

HeronNS
HeronNS
in reply to PMRCanada

How frustrating for you. Can you ask your GP to manage your PMR? I've never seen a rheumatologist and after reading so many experiences here I think I've had a lucky escape.

Mike1964
Mike1964
in reply to HeronNS

Sadly my GP isn't interested in anything apart from the legendary "How quickly have you reduced, thats not fast enough, you must do more" The simple logistics of I'm still in loads of pain why should reducing the pred even further help are lost on her :-(

HeronNS
HeronNS
in reply to Mike1964

Ah, no improvement then. :( It won't help many of us but I hope that medical schools are taking note of the tsunami of older people surging into the population and actually teaching the students more about the not so uncommon conditions of old age, like PMR/GCA. :)

PMRpro
PMRproAmbassador
in reply to Mike1964

Try a different doctor in the practice - there was one very sensible one in my practice, the one I usually saw was useless!

Hi Mike,l am sorry if l presumed that you must have PMR.l was only going by the posts l have read previously on this forum.l do hope that you will start to feel better soon,and so sorry that your wife is so ill, a very stressful time for you both.l am fortunate to be retired ,l cannot imagine having to go out to work now,especially when the PMR was first diagnosed,l could hardly move! Please keep posting and let us know how you are,kindest regards to you and your wife,l hope that she will be OK.

Mike1964
Mike1964
in reply to Grants148

Thank you for your very kind words Grants. Wishing you all the very best too.

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