DOES PMR LIE LOW IN SYSTEM PRIOR TO PAIN?

Hi Members,

I joined this "club" just over 3 weeks ago after being diagnosed with PMR after blood tests, obviously, when this hits you, you start to take stock of lifestyle etc in the hope of trying to discover what started it all of - looking back over the past year, theres been quite a lot of instances when I have felt unwell, not in pain but generally lethargic, and that lots of things I could have done I just shrugged off and thought cant really be bothered today, don't feel like it - I began to feel quite guilty because I thought I was being "bone idle" - suppose I have quite a stress life really - Mums 95 yrs old and I check on her daily, hubby could be more helpful, but if I am honest, hes just selfish anyway! Have had lumber degeneration for several yrs - had another MRI scan on Tuesday - so shall see consultant in March sometime for results, then in Novemeber I missed my footing on a step and ended up with damaged ligaments and was told to ice/heat and rest for 6 weeks - just as that was getting better the dreaded PMR pain took hold - what a tale of woe this is now I read it all back - am on 20m. daily of preds which have certainly eased the pain - have also altered my eating habits a lot - due to see doc in 2/3 weeks time to discuss and implement slightly lower dose of preds - I would welcome any feedback as to whether any other sufferers analysed how they were feeling during the previous year or so before the PMR kicked in.

Also whats the view on sensible drop in pred. dosage i.e. 2% less than present to see how things go when I see Doc?

Thankyou for listening -

15 Replies

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  • Hello winter10

    I, for one, believe that whatever causes PMR (remember, this is only a description of the symptoms of an over-active Auto Immune system) probably was lurking in the 'system' for a while previously. Many here report a period of stress and strain of what ever kind (psychological / emotional/ physiological) prior to its onset, and this was my experience too. The causes of auto-immune disease itself seem to be very complex and under-researched, and it ultimately seems to depend on who you ask!

    It's known that some environmental factors can trigger an auto-immune system over-response leading to PMR, including some viral / bacterial infections. I had a bad bout of Community Acquired Pneumonia (bacterial - the type you catch from someone, somewhere -Boo..) shortly before / concurrent with getting PMR, and my gut feeling is that's what sent my already struggling immune system into overdrive. I remember feeling mentally and physically under par for several months previously - it all adds up now.

    Extreme fatigue certainly is one of myriad of symptoms associated with both PMR, and with Steroid reduction (often, even at a gentle rate). The best advice re. tapering seems to be a maximum of a 10% drop compared with the previous month's / quarter's dosage (if in one 'drop') - or better still, the DSNS method (you can find an explanation somewhere on the forum) which is more continuous in terms of a gentle tapering gradient (rather than periodic stepping down) and has been proven to reduce the risks of painful and tiring 'flares' significantly.

    That said, the experts here will probably confirm that any tapering 'plan' should be more symptoms-led than doggedly sticking to a fixed reduction over time (and the proverbial 'race to zero' - regardless of what your GP might suggest), and you have to learn to be a 'patient Patient' in this often frustrating process (not easy for some of us!).

    Hope this helps, keep smiling on the journey..

    MB :-)

  • Hi winter10,

    For sure something seem to 'trigger' PMR or GCA. Most people on here had either had a stressful life prior to its arrival - whether that's workload, being a carer, family problems etc (which I know most get throughout their lives) or maybe a car accident, another illness or medication or an operation. I don't think anyone can put their finger on what kicks it off exactly, that's what makes it very frustrating at times.

    In my case, I was a carer for my husband for many years, and although he was still very able mentally, not so good physically and I'd almost "lost" him on about 4 different occasions over the preceding years. I didn't feel particularly stressed at the time, it was just a case of 'this is how it is' and we made the most of every day, but looking back I realise it was stressful.

    The initial dose of Pred needs to get a grip of the inflammation, which it sounds as if it has, and then you need to reduce slowly until you reach the level your body needs to keep it under control. That varies from person to person and also sometimes on other circumstances.

    A recognised drop from 20mg down to 10mg is in 2.5mg steps, but sometimes that's too much for some. Another is not to reduce more than 10% of your current dose, which from 20mg would be 2mg.

    I would recommend staying at each dose for 4 weeks, and then following an okay blood test, and if you have no symptoms, taper to next level.

    If you drop from one day to next you may get steroid withdrawal symptoms for a few days, so many use a method of tapering over a few weeks to stop that. Once I got to lower doses I used to take about 4 weeks to get from old dose to new, and then if everything okay then go straight into the next taper.

    Agree a plan with your doctor, but remember it is only that- a plan - you may have to amend it as you go along depending on how you feel. Don't ever reduce if you have any symptoms came back or don't feel,quite right. A week here or there doesn't really matter, you're in this for the long haul.

    Read as much as you can about PMR, lots of info on pmrgca.co.uk website.

    Good luck.

  • Thanks so much 20 to 18 m. was what I had in mind - GP did say at start of meds it will probably take around 18 month at least - so think that sounds about right - not that I am any good with maths/percentages etc.

    Thanks again for your reply.

  • Two years is usually the timescale bandied around by GPs, unfortunately they're not always correct. That's usually the minimum, some people are lucky and manage that, others lot longer.

    What GPs don't seem to grasp is that PMR or GCA comes along of its own accord - for reasons we discussed earlier, and goes when it wants! It's not like some illnesses that they deal with, where they know a 6week or whatever length, dose of medication will sort it out.

    The Pred doesn't cure it, there is no cure as such, it just keep the inflammation caused by the PMR under control. Ideally you are try to find the correct level of Pred to control the inflammation at all times. You obviously don't want to take too much, but if you don't take enough then you just get the pain returning. In some people the PMR burns out, or goes into remission within 2 years, but for lots it takes longer. So you can't say - right in 6 months time, or 12 months time I should be down to 10mg - you don't know, that may not be enough Pred or it may be too much. It's a very fine balancing act! And very frustrating at times.

    By doctors saying things like 18months or 2 years is a bit disingenuous- it gives patients a wrong idea of how long it's going to last, and sometimes they tend to feel guilty if they aren't off Pred by the the 2 year mark.

    I'm not saying this to put a downer on you, but to be realistic, as I said you're in for the long haul.

    When I was diagnosed with GCA, and I appreciate much higher doses, the ophthalmologist said to me " you'll be on Pred for a least 2 years, probably a lot longer, and maybe for life". That's not something you really want to hear, but at least it didn't put me under pressure to try and reduce too quickly. In fact I was off it at the 4 and half year mark, which was 4 months ago, but I'm still a bit dubious about any ache or pain I can't attribute to Arthritis!

    Take care.

  • Thankyou so much for your reply - like you say we are alldifferent and require different preds/different doses/different time spaces. Thankyou

  • Hello winter10. Yes I have thought back to why I got PMR and the only things that I could say for certain was that I frequently felt overwhelmed and haven't slept well for many years. I was physically fit and very active and have always kept my weight steady and eaten healthily. Stress would seem to have been a trigger though I believe genes come into it too. As to the sensible drop in pred I have so far managed to get to 5mg having started on 20 mg in June last year. However I have been using DSNS as advised on this forum and always wait an extra few days on top of that if I have any doubts or niggles. So far so good but I am being even more careful now I am this low. Hope this helps.

  • Hi

    Many thanks for your mail - I shall have another read about DSNS approach - don't really know which way to go at present as I am still in my lst month - just- of 20mg daily. Docs apt due shortly - if they can squeeze me in, of course!

    Regards

  • Mark mentioned this approach to tapering your pred dose:

    healthunlocked.com/pmrgcauk...

    The 2mg drop you mentioned fits with the basic rule of never more than 10% of the current dose. Some people can manage that much overnight (i.e. every day one dose to every day a lower dose) - for others it causes a return of symptoms, usually because of steroid withdrawal, your body resents losing part of its "fix" it has got used to and the symptoms are so similar to the illness for which you are taking the pred you don't know if it is that or a flare because the dose is now too low.

    Most people manage OK down to about 15mg/day but the lower you go the more difficult it may be. But the only way really to find out is to try. A fixed schedule rarely works well, nor do big steps and you should always be listening to your body and watching for what the symptoms do. The slow approach is being used in a clinical study and the feedback so far has been very good - as is the feedback on the forums where it has been used by many people over the last 2 or 3 years.

  • Hi winter 10

    I hadn't felt well for a good twelve months before I was diagnosed, couldn't put my finger on it just not well. Some days my body was buzzing with pain . Then it would improve . Had been going through a very difficult time for two years, very stressful.

    I do think this played a big part in it for me .

  • Thanks for your mail - it appears that STRESS has become a major culprit in many illnesses these days!

    I wish you well.

  • Hi winter10

    Welcome to our group & so sorry to read you've just started with the dreaded PMR on top of all your other issues.

    I believe mine had a cause, long story, short.....

    Pain in arm, caused by shoulder & unable to make specific movements.

    1st mistake ~ my GP sent me for Physio without an X-Ray or Scan.

    Physio made it worse, GP then referred me to U.Limb Surgeon who knew straight away what the issue was, my muscle was impinged by a bony spur on my shoulder, l had Surgery & it was successful.

    2nd BIG mistake ~ l went back to the same physiotherapist who continued the aggressive regime until I developed a 'frozen shoulder' she was then instructed by my Surgeon to revise her treatment but within a week or so my other arm just suddenly locked down 😱

    I was by now becoming extremely low as the pain was intense, l could no longer dress myself or do my hair & within another couple of weeks I developed extreme pain in my thighs, l was hardly able to get up/downstairs or out of a chair! Stupidly, l still went to work, how I ever did it l'll never know, my husband dressed me, drove me to the office & set my work up for the day! MAD!

    I had by this point been referred to a Pain Management Specialist as GP suspected a neck or spine issue. I had an MRI Scan which was unremarkable but the PM Guy suspected PMR although he thought I was too young at 55

    He did bloods & sent me to a Rheumatologist who confirmed the diagnosis & the 15mg of Pred were like a Miracle, even the 'frozen shoulder' improved though not as dramatically.

    So that's my story in a nutshell leading up to my PMR diagnosis.

    I've recently seen photos of me just before I started the Pred & l was shocked as to how thin & ill looking l'd become!

    I hope it all goes well for you & you make a steady recovery. There are many people on this forum who can help & guide you & answer any questions you may have.

    Very Best Wishes 💐

    Mrs N 💅🏼

  • Thank you for your detailed email - you certainly had quite a long run before proper diagnosis - wishing you well. Regards.

  • Hi Winter,

    Yes, in looking back, I had PMR for at least 12 months prior to diagnosis. Some things you and others have said that applied to me during those 12 months leading to PMR diagnosis:

    Feeling lethargic and brushing things off (Ususally to lay on the couch -certainly not something I had been used to doing!)

    Not being in pain- but feeling unwell, and overwhelmed.

    Poor sleep pattern for couple of years

    Noticing issues with muscles but not joints, like being really slow to rise from a chair or go up and down stairs. My mom, about age 87 then, would "pop" out of her chair and scurry to the kitchen before I could attain a standing position. I said over and over to myself "why is my 87 year old mom so much faster than me?"

    Began serious regular treatment for adult onset asthma. We tried several different medicine types-inhalers, antihistamines, singulair, etc. We switched a few of them because I thought they were causing muscle weakness/stiffness issues! Now, in hindsight, known to be PMR. Also had a very bad respiratory infection that had me on 60 mg pred daily, along with 8 other drugs for several weeks just to keep breathing and stay out of the hospital.

    I stupidly tried to keep doing everything I had done previously, because I didn't know anything was actually wrong with me.

    Finally, 11 months after known issues were appearing, I had my annual physical and causally mentioned minor pain in both thumbs. Dr ordered CRP, which was elevated and referred me to a Rheumy. Got an appointment for 1 month later, then went to Italy on vacation and walked all over with very little problem, but struggled tremendously even on just a few stairs. By the time of appointment I was completely miserable and my outer thighs were in almost constant pain.

    FYI- I've been on Pred 25 months-starting taper from 4 to 3.5mg today. I am finally getting quite a bit of my energy back. My best tip to getting better faster is acceptance that you need to cut back on activity (mental and Physical) and pace yourself with frequent rest breaks. It took me 10 months to learn that, and I didn't start to get better until I got serious about cutting back and pacing.

    I always find comfort in the fact that it will, eventually, go away. And, that this wonderful group is always available to answer your questions.

    Best of luck to you. Be nice to yourself, and take it easy. Hug.

  • thankyou for your lovely informative email - what a great site this is, like you, whilst I was lying on the settee for hours feeling so useless and wondering why this terrible pains in my arms and shoulders just kept coming on in early hrs of the morning, then gradually subsiding as the day went on - once a saw the GP and had blood tests and results indicted PMR I felt a sense of relief just to know what it was that was causing this misery - within about 24 hrs of first lot of preds. the pain had subsided, and touch wood hasn't returned, due to lower my preds by 2mg in next couple of weeks. I certainly have taken fresh look at my lifestyle and tho I presumed tiredness was just an ageing process, I thought long and hard about what I actually did do in a day - and came to the conclusion the answer was probably "TOO MUCH" ! Have always been active, but have had stressful stuff for 2/3 yrs now, and like you, my Mum only lives 5 mins from me so I obviously keep an eye on her - shes 95 - but sometimes can be a bit demanding!!!!!!!!!!!!! My husband is quite selfish - tho he had to help out when I couldn't even make the bed in the morning, or wash up the plates etc . So am now not so fussy about hoovering every other day, but doing stuff at a slower pace instead of constantly rushing thro the day.

    I wish you well, and thanks again.

  • I was diagnosed October 2016. I had pain in the spring 2016 (I am sure it was pmr). It went away for the entire summer but return in the fall.

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