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!)
Smile and the whole world smiles with you, cry an... - PMRGCAuk
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.🤞
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 🤦🏻♀️
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.
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.
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!)
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.
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.
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'....?
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.
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.
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 😁 ) .
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
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!......
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.
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.
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!
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.
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!
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.